Copious Chatter

Happy Valentine's Day!

2012-02-14T08:43:00.003-05:00

Today is Valentine's Day and I want to wish everyone a wonderful day. We can all find love in our lives if we look around. It doesn't have to be a significant other, it can be a beloved pet or friend. I am lucky to have Rob (we have been together twelve years) and friends and my beloved furbabies who all shower me with love. Friends can often disappoint us and I am trying to remind myself that most of my friends have never been sick. They are clueless to what I am going through/the battle of the past few years. I have tried to talk online with other people who have pulmonary hypertension. I have so much in common with them and they all struggle with friends who are also clueless when they are having a bad day. There really isn't anything anyone can do other than to be empathetic and understanding. One of the things that I don't like about Facebook is that people read your statuses and think they are following what is happening in your life. They throw a comment here and there and think that is what friendship is. Perhaps to some that is what it is but not to me. It's a good way to stay in touch with acquaintances but I don't think it can be a subsitute for a genuine friendship. The older I get the more I realize they are few and far between.
Today we acknowledge love and how sweet it is. I know what it is like to need someone and not have anyone, although I was married. Rob has filled so many voids in my life. He has been my everything the past few years. It's been a heavy burden for him to carry but he never complains. I wish I had the money to show up at his job with a brand new car for him. I wish I could do the most wonderful things for him but I am so limited. All I can do is show him what he means to me and try to take care of him the best I can.
Today I am going to treat myself to a pedicure. I'm not really supposed to have one but we won't tell the doctor. My toenails are a mess and it hurts me to try to do anything with them. Anytime I get in a position where I am compressing my lungs I get lightheaded and have been told I could pass out. Not cool. I need a mental health lift for myself. Where else can I get there for $20.00? A bargain I think. So today I will get a bright and cheery color (to combat the drab of winter without the ice sparkling.) I will think of those who have made me feel so loved and hope today they know how special they are.

Back to the usual...

2012-02-07T18:45:00.003-05:00

My aunt went back to Maryland on Sunday afternoon. Yes, I already miss her. We didn't get to spend as much time together as either of us wanted. The few times my mother invited me to join them I wasn't feeling well or just couldn't. On Saturday I picked her up and we went shopping at the Crate & Barrel outlet then the Coach outlet where she was thrilled at the prices. She left with two bags and matching wallets for each.

I have been feeling extra tired and sleeping more each night. I am also having a swelling in just one of my feet. The foot is painful to touch. I am sure it is full of fluid. Tomorrow I will have to go see a doctor I think to have them confirm that is all it is. I spent much of today trying to get papers together for the long term disability company. They have been subsidizing my SSDI to see that I get a total of 50% of my former salary but that ended January. I am trying to see if they will continue until July. In order for them to do that my doctors have to document that I could not do my job. Clearly, I could not. Unfortunately, I have many doctors involved and all of them must fill out and return the papers. I don't know why they make me do all this over and over again, well they just don't want to pay if they don't have to. They are a business, not a charity. Since SSDI approved my first application that means that the long term prognosis is poor at best. I was told by them most applications approved the first time are for stage 4 cancer patients only. I am glad for the SSDI but it's just nowhere near enough money to meet my expenses, even added to Rob's salary. I have taken on the Scarlett O'Hara attitude "I'll think about that tomorrow."

We are expecting a snow shower tomorrow and I am really excited. More expected Saturday. I am coughing and hoping I am not getting sick, especially with the P____ I cannot even say the word. Going to shut the computer down now and watch tv with the husband. His birthday was Friday. We went to Longhorn's and I got him the most delicious cake with fudge frosting. I felt fat cells multiplying as I looked at it! To compensate for what he had that night (filet mignon wrapped in bacon) today I made vegan vegetable soup. It was so delicious. I make it Italian style and honestly, it was better than Olive Garden and had a lot less salt. I tried to buy all the products I could salt free. Yummy and we have lots leftover too. I love soup in the winter.

February? Really?

2012-02-01T14:09:00.003-05:00

It's close to 70 here today and the sun is shining. How odd. We've had no more than a dusting of snow about six weeks ago. I love the four seasons. It seems we have three now. We had sprung for a new down comforter that we can't sleep under without being too hot. Where is winter?

I've had a lot of random, crazy thoughts lately. As I write this I am having pains in my chest, something I rarely get. It's like a needle stab.

These are my thoughts: WHY? WHY? WHY?
I try to distract myself from the negative but it's ever present. I am trying to be calm in the center of the storm of all storms. Why do I feel so alone? What can I do to get through this? I want answers. An email from God would be nice. I would appreciate the answer to even one question. I never want to hear the word terminal again. EVER. Incurable is more tolerable.

New Blog Look

2012-01-28T19:11:00.002-05:00

Today I got a yearning to update the blog look. I get bored with the same look all the time although I did love my lil snowman. I haven't been feeling well today. When the weather is rainy, warms up, then turns cold it has a negative impact on my lungs. I am also having ongoing stomach issues.
Yesterday was my mother's 80th birthday party. I got completely overwhelmed. I was worried with three brothers and four nephews we would run out of food. I made THREE pounds of baked ziti! It was really good and we had four pizzas and salad and honey barbequed chicken legs, wings and breast pieces. Delish. There was more than enough and my mother will have leftovers for the entire week, even with company! I cut my finger slicing bread and with the blood thinner, it bled and bled. I got exhausted and thank God that midway through the food prep my son called, told me I sounded tired and he was concerned, and he came to help me. We didn't leave a dirty pot or pan and he carried all the food to the car and into her house. I couldn't have done it. Everyone seemed to have a nice time. I also bought a cheesecake for my aunt who is visiting. Her birthday was in September and she had never received a birthday cake. We wanted her to feel special too. I think it worked :)
I'm glad my mother had this birthday. I don't think I will be able to do anything like this again. Today I ache everywhere, am short of breath again etc. I slept ten hours with oxygen overnight but still am not where I should be physically.
I am on an emotional roller coaster which seems to be out of control at times. One minute I find myself very depressed and the next just determined to fight to the very end which will be a long time away. Reality sets in and I grasp that this is all unknown territory. I KNOW that I have a fatal illness. That illness can cause sudden death or respiratory failure which takes years. Noone knows why some patients live so much longer than others. I read that because I no longer have my spleen my lifespan will be shorter as well. My family seem not to grasp any of this. My sister came to my mother's last night and hugged and kissed a sister-in-law and when we said hello, we weren't even acknowledged. I just don't get that. My oldest brother has been calling a lot, he made it a point of hugging me and offering to help etc. He and his wife bought us a special Christmas gift. My middle brother and his wife are loving, kind and supportive but have had their own stuff to deal with this year. My youngest brother came to my door last week but it was an odd visit. His wife didn't want to exchange gifts this year she said but then showed up at my other brother's with gifts for his family but not for mine or my sister's. This is the one my sister acted so happy to see. I don't get these people, I really don't. I am starting to let them go. The ones that can't see beyond themselves....I couldn't treat an acquaintance the way some of them have been treating me. I know that someday they will be sorry in the long run but I find no comfort in that. I have to focus on the people who have chosen to be there for me.

The Value of Friends

2012-01-23T10:49:00.002-05:00

Last week I had lengthy conversations with two different friends. My friend Monica I met when I was 19 and she was older, married with 4 children. We worked together. She has ALWAYS been there for me....through cancer, heart surgery etc. It's been mutual as I have always tried to be there for her, as when her husband died. Speaking to her is like getting a deposit in my emotional bank account. She builds me up and encourages me. We talk about her problems but she doesn't dwell on them. She's a good friend who lifts me up.
Last week I also had a conversation with a friend I'll call J. She had just gotten back from a vacation (which she was treated to by her mother who she is always complaining about.) She called and launched into a tirade of how she had played tennis and fallen and her injuries were inconvenient. (These were minor injuries.) She went on and on. I was silent for a long time and then she said "And how are you?" I paused a few minutes before telling her that it has been five years since I have had a vacation. I told her that she really needed to stop dwelling on the minor stuff and focusing on the big stuff. This friend has been calling and when we hang up I am emotionally drained after listening to her. She is dragging me down, not lifting me up.
I have made up my mind that at this time in my life I can't allow people to do that to me. I am fighting a rare and fatal illness that some people manage to battle for twenty years. Others don't do well. I can't help but wonder how the mind contributes to this. We only have so much emotional energy. When it is used up in a negative manner, it's gone. There's none left for the positive thoughts or the strength on a bad day to get through it knowing another good day is on the horizon. Life is all about choices. In the past I was willing to make choices that were not good for me in order to be the friend some people needed. I am not responsible for the needs of my friends, nor are they responsible for mine. I do however require that they are considerate of me enough not to use me to dump on. I don't deserve it and I won't accept it.

Oh Mama

2012-01-22T11:57:00.002-05:00

I have been so busy shopping for and planning my mother's birthday celebration. Weather permitting, all five of her children and her only sister will be there. I am excited. I am making a large tray of baked ziti that morning and doing a huge salad, picking up helium balloons and setting up a buffet at her home. (My house is too little to accomodate 14 adults and a few little guys.) I have her gift basket too. She loves this author whose books are no longer printed and we did a search on Amazon. Com and I found her four that she wanted. They are in a big basket with some great snacks, candy and a wonderful new tall mug for her Keurig. It's hard to believe she can be turning 80. When my father died, I realized that one day my mother would be gone too. For those of you who have lost one parent, I know you understand. She has slipped in her mind more than in her body, but she is aging. Yesterday she took two doses of all her meds. She was really concerned. Dad's hospice aide, Tom came over and assured she would be okay. I went and spent the day there and we ordered dinner so when we left she had stew I had made, a large chef salad and chicken parm in her fridge for the next day or so. We also made a huge fire in her woodstove. Will probably go over later this afternoon and make sure another fire is going. I can't carry or lift the wood but she can and I do the rest.
My ulcer is really painful these days. I am taking Prilosec and am restricted with the PH med as to what I can take. Everything I put in my mouth gives me heartburn.

There is a lot going on in my family right now. Since my Dad died the family dynamics have been topsy turvy. I don't want to get into it, but it's difficult. One of my siblings came to my house feeling "out of the loop" and I tried to expalin that we are ALL feeling that way. I went on to say that with all my health issues, the family dramas are NOT my top priority right now.
Well, this is short but I need a long, hot shower. Not feeling so great today. It's noon and I am still not showered or dressed.

Turning The Page

2012-01-12T15:09:00.002-05:00

One of my New Years resolutions was to read more. There was a time when I read two books a week. I have had dry eyes and it makes it difficult to read. I have also switched to progressive lenses which I don't see as well with to read.
My reading glasses are an old prescription. I need to go to the eye doctor and get them checked again and maybe get another set of lenses for them. My DH had read The Girl with the Dragon Tattoo and the sequels and really liked them. I just finished the first one and have started on the second one (yes in ONE week. woohoo). They are so well written and I am a bit envious of my friend, Monica who read them in their original Swedish. I met her when I was 19 and she seemed so sophisticated, having left her Sweeden and lived as a governess in England before meeting a US soldier there and coming back with him. She took me under her wing in many ways while we worked at McGraw-Hill. After my son was born I quit. There was no child care back then and I lived in a rural area. Noone I knew was babysitting and for the next twelve years I was a stay at home Mom. After that I went to college part time until my son became ill at 16 and the next three years were spent taking him for medical treatments when he wasn't hospitalized. When he was, I slept in a recliner in his room. When he got better I went back to work and worked up until last year about this time when I left sick. Although I planned to return about this time, the company let me go and I discovered that I am no longer able to work. It's such a huge adjustment. I miss my coworkers. I miss the socializing. I miss my paychecks. I even miss my cafeteria with our own little Starbucks in it. It's like my entire life has changed so much. There was a time when I had so many friends. It seems over the years they have moved away or their lives went in a different direction. I feel alone much of the time. One of my friends was going to come visit today but ended up in an emergency room with her elderly aunt. If only there really were a time machine and we could go back. If only I could feel what it was like to be 19 again, healthy and strong. I don't remember what it was like not to be short of breath. I've been this way for years now. My neighbor came over yesterday to check on me and we went for a walk. She couldn't believe how much trouble I had going up a small incline. I have oxygen but it's so heavy to carry. We had thought we would go a mile. I had to stop after half a mile. At least I made it that far. It was good to spend time with a friend.

A Big Surprise

2012-01-10T14:04:00.001-05:00

Today I saw the mailcarrier walk up to my door with what looked like a delivery from Omaha steaks. Just as my chops were watering I saw that it said "FRAGILE" all over it and knew it had to be something else. A girl I have known since I was 9 years old sent me a big package filled with gifts. Her birthday is Nov. 26th, often Thanksgiving Day and some bad things happened all that day. She chose not to celebrate. I knew that noone, including her husband, would acknowledge it and I sent her a package that arrived the day before with a birthday and Christmas gift. It turns out it made her birthday happy again and she said it was her best Christmas ever. When she called me, I told her Rob and I had been gifted money by our Moms and aunts but it had been used for Rob's car repair other than a purse for me and paints for Rob and a few other things he wanted. Under my tree I had a few things from him and a small box of candy from my neighbor across the street. It was a lean year. This friend snapped into action to fill the box with things that I would really like. She even threw in a few things for Rob. She gave me a beautiful satin nightgown with the matching robe, bath gel, lotion and perfume in a Jasmine scent (really pretty), a Thomas Kinkaid winter house that lights up, a winter jacket, earmuffs, mittens and a beautiful plate with a stand that says "Flowers Feed the Soul". It felt more like Christmas today than the actual day and it was so exciting. I'm not a materialistic person and she went overboard but the thought in what she did, and the time it took her to shop and wrap and package it all, was what I truly appreciate. She is not well herself and works part time.

I have been waiting home all day for the delivery of my medicine. It is sent UPS and I have to be here to get it since it's so expensive. Yesterday I was up early to go see my cardiologist and that became a bit stressful which I will talk about in the PH blog. Right now, I feel very special and very cared for. It just doesn't get any better than that. :) Thank you Dee. ( Pictured at top. )

Zippity Do Da .....

2012-01-06T09:25:00.002-05:00

I was awakened about 5 a.m. by ear pain. It felt like pressure but when I got up and began moving about it went away. I have already done two loads of laundry, had breakfast and washed all the pet bowls. I even tended to my virtual farm on Farmville which has been neglected. When I get done blogging I have to go continue with laundry folding.

I have been so busy getting my mother's 80th birthday planned. There is so much confusion when you have five children, each with their own ideas and opinions. I wanted to do something in her home so that all her family, including grandchildren could be with her. It looks like it will be everyone there at this point, including her sister from Maryland. Great photo opportunity. My brother is furnishing many pizzas and I am going to have a large tray of something (ideas running through my mind are a chicken or pasta dish) and a salad. Of course there will be an enormous cake and other things people decide to bring. When you do this in a restaurant they rush you out and noone wants to come back to the house for the cake. Been there, tried that. Also, I am so limited with my sodium in my diet there are few places I can eat at. Most of my family love the Olive Garden. There is nothing there I can eat. I refuse to go and watch others eat or pay for a meal that I can't have. It's not fun giving up salt. I will not be able to have pizza but they all love it. Thinking I might have a crock pot of dirty dogs too.

I had a rather unpleasant experience at Costco this week. I went to buy something at their food court and it was going to cost $2.76. I took out two singles and found I didn't have the change so as I handed the young woman behind the counter my money I said "Oh, this is making me break my twenty." She was ignoring me and looking all over the place. She handed me some bills and over that was a paper plate. I put the plate down to put the money in my wallet when I realized she had given me change for a five. I told her immediately and she said "You gave me a five. " I responded "In my wallet were three bills: a twenty and two singles. Had you been listening you would have heard me say that I would have to break my twenty as I didn't have the coins to make 76 cents." The guy in the back asks her what's wrong and she says rather loudly "She says she gave me a twenty but she didn't. She gave me a five." Now people in the line are staring at me like I've done something wrong. I ask her to call over a manager. She does and as the manager approaches she calls out "What is wrong?" and the story gets loudly repeated. A part of me wanted to walk away but I refused to be ripped off by this person who has no manners or concept of how to treat a customer. I ask the manager to pull the drawer and count the money and give me back my $15. She tells me that it will take well over an hour and it would be easier if I would wait until the following morning after they count the drawer she will call me and then I can come pick it up. I explain that a. I am not the one at fault b. she needs to instruct the woman to stop saying that I gave her a five when I didn't even have one in my wallet and c. that perhaps this was not an accident but deliberate and that I have heard some cashiers do this and later remove the extra money. I prefer not to be inconvenienced to return.

The manager is very nice and clearly running around like a chicken without a head. I don't want to be unreasonable to I tell her to call me in the morning and I will return. On my way out I go to the customer service desk and ask if I might speak to the store manager. I'm not really comfortable leaving without my money and don't get why pulling the drawer would take that long. She calls up the same person I have already spoken with who repeats it all again. I tell her to call me in the morning and I will return. It's not that far.

The following morning I took the dog to the vet and got home and when I still hadn't received the phone call as promised at 11:30 I call the store. I am then told the person who looks at the sales and drawer amounts has not come in to work and was supposed to be there at eleven o'clock so now I am really annoyed. She tells me she can't give me a refund without approval of the store manager. She will call me back. She calls back and says he's not available for her to speak with. She will give me a gift card with the amount on it. I tell her I am going to call their corporate headquarters. I call them and they agree I was not treated well. He will call the store and speak with them. He said they should have pulled the drawer. He says to go there and speak with the store manager. I return and once again am told he is not available. The food manager tells me she will cash the card for me so I can leave with the cash. Folks, I am not happy. I was seriously inconvenienced and I never did receive the call back yesterday afternoon the customer service supervisor promised me. My neighbor who works at Wegman's told me my treatment there would have been much different. They wouldn't tell me if the drawer was over or not and I feel that they are hiding something. I will not be doing the majority of my shopping in Costco. I will do my shopping where I receive good customer service.

One Bad Night

2012-01-02T15:19:00.004-05:00

I don't know what is going on but it seems I have a real indigestion/stomach issue. If I drink coffee I pay dearly but now even food is doing it to me. I have what taste like sulfur belches and went to search that on the internet. It says that can be an indication of a duodenal ulcer. I am on another medication that can cause ulcers also.
Last night I had a salad with chicken breast in it for dinner. The pain/discomfort began around 9 o'clock and I couldn't sleep. When I tried to lay down the acid was coming up my throat and I was getting nauseous. Finally, I was so desperate that I called the drug company's nurse and asked her. She told me to try Tums and it worked. Mind you, I would have tried that on my own but you have to clear anything you take over the counter with them. The drug can interact with herbs and OTC meds and you can have serious problems. I finally conked out about three a.m. and slept until noon. My dear husband was off today but got up at 7 a.m. to care for the pets so I could sleep in. I feel so badly at how much this illness impacts his life. I have been on this medication for three weeks now. I have never had so many side effects from any drug I have ever taken as this one. I have no choice. I am battling to get the pressure in my lungs/heart under control. People can't see those organs or the nausea and want to tell you look great. I appreciate that but they should only know. Somedays I am just tired and miserable from the side effects. I hope and pray it will get better soon. I think it will.
Happy New Year!

Bueller....Bueller

2011-12-29T21:24:00.005-05:00

I have to rant for a bit. If you don't like ranting just skip this entry. I have posted on my FB that I have pulmonary hypertension. Anyone who has any interest in knowing what is going on with me could look it up through google. You quickly learn a few things. #1 It is incurable. #2 There are nine drugs used to treat it. (Some require a central line put in to use as they can only be given intravenously. Most of those also require you have a pump to push the medicine through 24/7) #3 You have good days and bad days. Now, having said those simple things why do people either a. act like you are dying soon or b. act like there is nothing wrong with you or c. act like you will overcome it completely. I am a realist. I don't plan to die in the immediate future. I plan to try drugs, I have started the first one nearly three weeks ago. There are days I feel like I have an incurable disease. There are days I feel okay enough to do some things. I will never feel healthy or energetic as a normal person would. This week one friend (who I believed was having some wine early in the day) called and cried about what a loss she would suffer as I was the greatest friend. To be honest, this annoyed me but didn't upset me in any other way. It annoyed me more when a friend I sent a letter to just ignored it. No phone call but yet another FB message wishing me well, in a generic sense. One of my friends I have made who also has PH (so cute they call each other PHriends) advised me I need some new friends. She said you need support and the people who can't offer you that don't really care about you. I think she was right.

Another Disappointing Christmas

2011-12-26T17:27:00.002-05:00

It's been so many years since I loved Christmas.....I guess when you aren't a child, or no long have a long child something in the excitement gets lost. This year, like so many before it was a huge disappointment. It actually started weeks ago. A sister-in-law decided she no longer wanted to exchange gifts. This is someone whose income is multiple times what mine is and gets everything she wants all year long. She no longer felt she wanted to buy us gifts or receive things that she didn't want. She told me that she was going to do this with the entire family and not attend my brother's Christmas Eve family gathering and gift exchange. After she told me that she said "Is that okay with you?" How do you answer something like that, if you say that it's not okay and you want to exchange you are trying to make her do something she doesn't want to. Besides she said she wasn't going to my brothers so I didn't think it would be so bad. About a week later she informed my sister of the same thing. That night she was at my brother's and guess what? She didn't tell them she wasn't exchanging gifts and she had a nice pile of gifts for them. When we arrived she had made sure she arrived early and was in the kitchen away from the others when they arrived. I was really hurt and felt mislead. While this may seem trite please remember this is a year where my father died, where I was hospitalized four times, had the heart surgery and received the news that my condition was not curable. NOT a good year to put it mildly. I tried to focus on the my loving sister-in-law who was the hostess. I cried when I got home for hours but then tried to let it go. I knew Christmas Day they would not be at my mother's. I arrived at my mother's (with a seven pound hot ham and casserole dish of sweet potatoes) and they were no where near ready to eat. My mother is very disorganized and nothing in her kitchen is in the same location twice. We never could locate the turkey lifters and my sister struggled to get a twenty pound turkey out of the oven with a fork and pancake turner. Needless to say, it fell apart. We sat down to dinner and things didn't taste right or well to me. I was freezing as well. After dinner my sister and I were sitting in the living room talking. The back door into the family room/kitchen area opened and I heard someone coughing their head off. They sounded very ill and I realized it was my sister-in-law bringing over my mother's gifts. I felt anxious as her coughing sounded like bronchitis or worse. Around that time my brother started a fire in the wood stove and a horrible smelling smoke filled the downstairs. At that point I knew I had to leave. Rob had run home to feed the animals dinner and I called him and told him to get right back and pick me up. He found me waiting outside wrapped in a blanket. When I grabbed my purse from the room the cougher was in she said something like "Where are you going?" I answered "No where near you." She then snapped to my brother "We're leaving." How thoughtful after contaminating my eighty year old mother and her home with her germs and filling her house with smoke, they were ready to leave. When I got home I was so cold I shook for hours. As the night progressed I felt worse and during the night I began vommitting. I will not be planning to go to my mother's house again. She knows where I live and can come here. My sister feels I am not up to entertaining here but trust me, it's a lot better than what happened to me yesterday. My stomach is touchy today but not like last night. Next year I want to skip it altogether.

The Stockings Were Hung Sans Chimney

2011-12-22T16:00:00.003-05:00

Sometimes I really, really, really miss my old house. In particular the large dining room where I had family meals and my fireplace. Oh how I loved the cozy fireplace. It burned wood for many years and the last few years I lived there I had it converted to gas. That was pure heaven. The logs, though ceramic, looked like oak and the warmth was amazing. At Christmas time I loved to hang our stockings from it. We are those nutty type people who have stockings for each pet as well, even birds. The stockings always held gifts as well as candy and smaller items. They still do. I had a huge tree back then. We had grown many of them on the back acre of our property. While it bothered me to cut them down I was glad I did when a neighbor who later moved in behind us cut down about eight huge blue spruces that had been planted for that purpose. He thought it blocked his view to our garden. I was so outraged but it was too late to be rectified. What really infuriated me was that this man from Long Island never bothered asking us where the property ended and we had paid the surveyor several hundred dollars to sink concrete markers should we ever need to show someone. Had he just ASKED those trees would still be there. He left them on OUR property after cutting them down to rot. But I digress.......in our newer, smaller home there is no place for a fireplace at all. It's completely open. The kitchen wall over the sink has a huge opening into the living room so you can communicate with someone there. While I like the openness of it, you lose wall space. Our TV could only go on one wall. The other wall has a huge bay window. It's really tough placing things, especially a Christmas tree. We always put it in front of the window. We have a slim tree and it fits nicely. My tree does not have a theme, as some do. My tree has ornaments that were made by my son when little, or given by friends many years ago. Some break and new ones are constantly added. It's a tree of memories. This year two new ornaments were added. One in memory of my beloved Grandmother and the other in memory of my beloved Dad. How my grandmother loved Christmas! She started baking a month in advance. She did so wearing an apron with Santa popping out of the chimney. She made one for herself, one for her mother (who was in her late 70s at the time but still baking!) and a small smock type one for me. I have mine. It has been laundered so many times it has a small hole in it. It's one of my treasures. That and the paper mache' Santa that my son made me. This has been a rough week. My mother has cried day and night on and off most of it. Sometimes I cry with her. We have been to the cemetery twice. No Dad there carving the meat at the head of the table. He hadn't been able to do that the last year and a half either. We could never please Dad with gifts, he enjoyed giving them but not getting them. I miss him so much. I bought these small ornaments with a place for a picture. On the outside they say "Forever in our Hearts" and I put Dad's picture in them. On the back I used a label maker and printed out a message that my sister and brothers will read when they take them out: " We were blessed. We had a father who loved us." It's my way of honoring him. My father was not perfect. He made bad decisions sometimes and he yelled to excess at times. I have some of his faults and some of his attributes. We both are quick to forgive. When I read some of the horrible things that some parents do to their children it makes my blood boil. All children deserve to be loved and kept safe. Since my Dad is gone I feel less safe somehow. Silly perhaps, I am an adult. While a part of me will be sad on Christmas Eve and day, I will do the best I can to enjoy the moments. I know it's what my father would have wanted me to do. I can still hear his voice in my head "Oh babe, it's not that bad." You're right Dad. No matter how bad it seems I know there are others who have it so much worse. I will always fight for a good outcome because you taught me to hang in there when the going got tough. Thank you Daddy. I love you and always will.

It's Beginning to Look a Lot Like Christmas

2011-12-16T12:47:00.003-05:00

We got the tree up! Rob put it up Wednesday night and I decorated it in short sports of effort on Thursday. When he came home it had all the ornaments and garland on it. I was also baking sugar cookies and he helped me. I make the same sugar cookie recipe all the time. I have cookie cutters for vaious holidays and it's a standard. I get requests for them. This year I did colored sugar for some but frosted and decorated others. I should have taken pictures before putting them in the tins. We decorated them with white or red frosting and the Wilton bags with tips. My angels were very pretty with tiny decorations that look like pearls. So yummy.

I was supposed to go to rehab today but just couldn't as my legs were in so much pain (a known drug side effect.) I was up for hours during the night. Rob called about 11 a.m. saying he felt ill and was on his way home from work. Right now our gifts are purchased, tree is trimmed and cookies are baked so we can relax a bit. I am giving fewer gifts this year. Does anyone else feel annoyed, as I do, when you see commercials where they are giving diamond jewelery or a new car? PLEASE!!! In this economy where some people have no jobs it's just wrong to imply you are not a good spouse if you are not giving a gift like this. I cannot imagine how materialistic some of the kids who view these from birth will be. Because I am home and get bored (or don't feel well enough to do anything other than watch tv) I have watched some of the Housewives of shows....some of these women are unbelievable. A man presents a ring to his wife and she can't thank him until she adds up the diamonds and tries to estimate the carats. I actually wonder are they kicking this up a knotch or two for the camera? I hope so. They attend/host charity events that are a joke. Not that much money seems to be made and the focus is on what they are wearing or eating and gossiping about those not there. When it comes to their affairs the sky is the limit. One group was critical of another member because she doesn't work and has three nannies and other help. I have to wonder what would happen if they had a real problem to deal with (well at least not one they created.)
My sister is coming Thursday. That leaves us three days to visit and shop before the Christmas Eve celebration at my brother's house. They always have everyone and a huge spread of snacks and desserts. I'm doing a Christmas dinner with ham, with my sous chef's help. :)
Hope the sun is shining in your little part of the world today.

The Adcirca is here!

2011-12-14T18:38:00.002-05:00

I got the approval and my drug arrived today. At 3 p.m. I took my first dose. If you want to know more about that check the new blog with the link in my last entry.

Rob and I went out last night and I had a drink. I will only be allowed to have 4 ozs. of wine once a week from here on. The alcohol affects blood pressure and so do the meds so they discourage drinking. We went to Chili's and a got a snack. Also went the mall and splurged on a new down comforter. I tried to be more economical and get a down alternative but it didn't compare. I got a Macy's coupon and it was only $50 more to get the real down and well worth it! We had ordered a red duvet cover a few weeks ago but when I got out our cold comforter it was in bad shape. Besides, they know make them much bigger and there won't need to be a tug of war while we are both sleeping! It's hard enough to sleep with a Cpap mask on without trying to get my fair share of the comforter.

Today I went to rehab and then came home but was exhausted. I changed the sheets on the bed and managed to get the new comforter into the duvet. I still have cookie dough waiting to be made into fun shapes and decorated. We have yet to put our tree up and Rob is out now picking up a few groceries and looking for some things he wants with Chistmas money from my Mom.
That's about all the news for now. Supposed to rain tomorrow and maybe I can get Rob just to get the tree down and together. I have all day tomorrow to decorate it and work on the cookies. Hopefully I will have a good day.
Hope you will too.

Pulmonary Hypertension Blog

2011-12-11T17:40:00.003-05:00

I didn't start out with the idea that this blog would be dealing with my illnesses. It was just a place to write my ideas and stay in touch with some of my friends. Since I have so much to say about the subject and I find there is little in the way of support for other patients who have this (it is called an orphan drug because of it's rarity there are few organizations who support it and the costs of the drugs are great.)
If you want to follow my journey with the PH the new blog link is:
http://underphpressure.blogspot.com
I will be posting here as well but not going into the details that I will there.
Peace.

As Tom Petty Said "The Waiting is the Hardest Part"

2011-12-10T19:40:00.002-05:00

I am still waiting to hear that my insurance company approved the medicine for me. Since this is an "orphan disease" with few patients, the cost of the meds are astronomical. The one I am trying to get would be about $1600.00 per month. I have no idea what my copay will be for the drug. There is ONE charity that helps people and the drug company will help with the copay but no more than $800.00 per year. If my copay were a thousand dollars that would be used the first month. There is limited resources here and I am eager to know what the copay will be. I do know that I will not wipe us out financially for a drug that might not even work. I am not sleeping well and at times feel overwhelmed. I continue with the cardiac rehab although at times I have to stop or slow down. Rob has been working all the overtime he can get. It gets dark early now and it seems the days are very long. Somedays are not so bad and others are terrible. This goes with this disease. I hope to be better once on the medicine. They tell me it will be easier to move around then. I still have some post surgical pain and the rehab is not helping. Some nights I have to take a pain pill or I won't sleep at all.
My Christmas tree is not up. I keep going back and forth as to whether it is worth the trouble. I do have lit wreaths and garland Rob put up outside and some decorations here and there. I can't find my merry. I hate uncertainty.
I have most of my gifts bought and wrapped and cards were mailed. I'm going through the motions. I went to a support group meeting that was supposed to be a holiday party. I heard the word fatal so many times I felt dizzy. The speaker was a wonderful doctor who knows my doctor and told me I was in good hands. My sister and brother both called to have lengthy conversations and I visited my middle brother Friday with his wife and grown children. It was wonderful. Life goes on no matter what the circumstances are and I keep telling myself that I beat cancer twice, survived two heart surgeries and pneumonias where I was critical. I have to rise to the challenge and get this under control. Hopefully they will keep finding drugs to buy time until they discover the cure.

Back to Philly and Another Doctor

2011-12-02T14:38:00.003-05:00

Yesterday I was called back to Philly to see the pulmonary hypertension expert. It was a lengthy visit as I had to do a six minute fast walk to test oxygen level and he reviewed my recent echo and information from my catherization. We already knew I had this condition but he confirmed it. Sadly, this is not "curable" but we can hope to manage it with some meds. Most people don't know what PH is and what causes it. Most people think it's blood pressure related, which it isn't. There are a few different causes of it. Mine is secondary (meaning it was caused by another condition) and was caused by my mitral valve which was recently repaired. The hope was that when the valve was fixed the other condition would significantly improve if not totally be eliminated. Apparently, because the valve was bad for so long it has caused permanent damage. The bad valve was putting so much pressure on the lungs that the arteries in them became smaller. As a result of that, pressure built in my heart to many times what it should have been. Now that the valve has been fixed it's trying to pump properly but the lungs won't allow the blood in and the pressure in the heart remains too high. This causes the right part of my heart to be dysfunctional. The drugs that the doctor uses will open the arteries, dilate them and lower the pressure as well as make me have more energy and feel better. The insurance company has to approve the drugs which are rather expensive. It should take about a week before I know how much the insurance will pay and what my part will be. I have no choice but to use them, my heart cannot withstand the pressure for a long period of time. I am glad there is a treatment but I will feel better when I hear the numbers have gone down. This is a rare condition and I wish I could find a support group in the area but it's not likely.
At least I know now what is wrong, why I have been so ill and perhaps how to fix it. Progress. This means many more trips to Philly but when it's your life on the line, you do what you must.

Thanksgiving Eve

2011-11-23T14:37:00.003-05:00

Thanksgiving causes me to reflect on just how much I have be be grateful for. When I was a teen I despised my parents much of the time. They were so strict and I felt that I was a wild bird who wanted to fly but all they could do was clip my wings. They were hard on me. When I screwed up I didn't get a sympathetic lecture on how everyone screws up. I got punished. I couldn't wait to get out of their house which is how I ended up marrying someone when I was just 17. The man was a college graduate who owned his own business and was highly intelligent. My father was relieved that I would have security. It blinded him to the fact that I was not mature enough to make a decision like that. It blinded him to the parts of the man's past that he lied about (which included his age.) Shortly after the marriage I called my Dad and asked him if I could move back home. He said no, that I would adjust. I did a lot of crazy things that year trying to cope with my feelings. It has only been in recent years that I realize my Dad couldn't understand how I felt. He once told me that love was a feeling but at a point it became a decision. Many years later you wouldn't have those feelings and you would have to honor your decision. He was really upset when I got divorced and he refused to help me in any way. He said some hurtful things at times and I just left telling him that I didn't want to hear it. I understand now that he was very worried about my health issues and financial future. He wanted me to be able to get anything I needed (not wanted but needed.) After he met and came to know Rob he learned to love him and sometimes he would just do very nice things for me. He finally got it. I am so grateful for the time that Dad and I finally understood each other. I forgive him for the times he failed me, as he forgave me for the same. This will be our first Thanksgiving without him and it's hard.

I am so grateful for my son. He battled leukemia at 16 for three and a half years. He is okay now. He is a mother hen calling me once or twice daily to check in on me. At times it gets on my nerves but there is nothing like having a child show they love you. He is also very verbal about that. He is a kind, caring and generous person.

I am most grateful for Rob. He uses every day he gets off work getting me to doctor's appointments or hospital admissions. He's the one who sees me when I fall apart and gently picks up the pieces. He is always empathetic and helps me in whatever ways he can. That to me is love. Always putting the needs of another over your own. I feel badly at times so whenever I can I try to spoil him a little. There is nothing I could ever do to repay Rob for all he has done for me. When you become ill you lose most of your friends. They just call less and less and back away. I few a few people who have hung in there with me but it's Rob who I truly count on. When I was younger I thought that my friends were more important than family. My view on that has changed a bit. They share the loss of a parent with you and your history. My siblings matter much more to me now than they used to, especially my sister. She will be here tomorrow with my mother, son, husband and I. Dad's presence will be missed but he is at peace. That's another thing I am grateful for. His death softened my mother and we are in a much better place than we have been in before.

I am also so grateful for the wonderful doctors who have gone the extra mile for me this year: Dr. Gilbert, Dr. Hirshfeld and Dr. Gopal and even a few others. Without the intervention of Dr. Gilbert who met me when I was in critical condition, I wouldn't still be here. I battle on for more Thanksgivings, more Christmases and more times just to feel loved. Life is so wonderful. Each day is a new adventure, a chance to meet a new friend and to remember those from the past. I wish I could give everyone I know a cup of gratitude. Happy Thanksgiving from our home to yours.

Rob, myself and Tom at a wedding Sept. 2011

These are the people that keep me keeping on

The Saga Continues

2011-11-16T13:43:00.002-05:00

On Monday I went back to Philly to see the cardiologist there. I also had an echo done. Without going into a lot of details the bottom line is that I still have pulmonary hypertension. It's hardly improved as a result of the surgery (although thankfully the valves are working perfectly.) The doctors and I had hoped that was the cause. Sadly, it wasn't and the problem persists. My heart will not be able to sustain the pressure without something happening ( I could not bring myself to ask just what might happen. That is so unlike me but I could tell by the doctor's demeanor that this was very serious.) As a result of the echo results, I need another heart catherization. I need a cardiologist brought on board (number 3) who knows all about the drugs used to get the pressure down and hopefully manage the problem. To say I'm depressed is an understatement. It's all I can do to drag myself out of bed and to cardiac rehab. I also have a small amount of fluid IN my right lung. Usually it is outside of the lung. This means if I come in contact with bacteria of certain types it might become pneumonia. I am trying to veg out and not let this overtake my thoughts.

I am having my mother, sister and son here with us for Thanksgiving. I am insisting that I do this because I welcome the distraction. The doctors office just called and wanted to schedule the procedure but I told them that the doctor first had to decide if he wanted me in the hospital when the new drugs are administered or it would be a one day procedure. In any event, the artery is cut and you have to be really low key for weeks. Not sure if I will be able to continue with cardiac rehab then.

That's just the news. It's rainy and dismal here today as it was yesterday. Just what I needed. I just need a few days to process all of this and get myself back to the place where I normally am knowing that I have overcome many obstacles in the past. I'm tough but that doesn't mean I don't have fears and feelings. I will get through this.

Too Much Going On

2011-11-07T11:08:00.003-05:00

I don't know where to begin. The past two weeks have been filled with going to cardiac rehab when I am able to, doctor visits, lab visits and a three night home sleep test. The stomach/intestinal issues that started two weeks ago are still with me unfortunately. I have not had a meal or anything other than bland food since then. The stomach medicine works well in controlling the acid that was out of control prior to me taking it. Much better than previcid. If I feel nausea I have the Zofran which I have to take. My lung doctor had told me I would be hearing from a company which would be sending me a three night sleep study. This is a result of the surgery and weight loss possibly eliminating or lessening my sleep apnea. I sleep with a machine every night for it. Oxygen is bled into the machine and I get quality sleep. Losing over thirty pounds and/or heart surgery can change the severity of the apnea so a new test was necessary to determine what setting the machine should be on. Normally one goes to a sleep center (which I did last Fall.) Mine was like a nice hotel room and other than them constantly waking me to have me try different masks, it wasn't a bad experience. The home test takes three nights and if you have to go to the bathroom you have to release yourself from the machine. You are sleeping with something under your nose yet partially covering your mouth, a tube around your center and a finger oxygen monitor. You are closely tethered to the electrical unit and if you move the wrong way it talks to you which wakes you up. Not an ideal way to sleep. I was so ill Saturday night that I had to give up but then I managed to do it Sunday night. They need you to sleep at least four hours per night for the test. Today UPS is slated to come pick the box up and return it to the company. I have accumulated so many pieces of medical equipment the past two years. A huge liquid oxygen unit sits in my living room.

Last week I learned that an acquaintance from many years ago (a former pastor) had a valve replacement surgery. He was doing well and left the hospital and passed away last week. Rob lost an elderly aunt and my neighbor's mother (who lives with her) lost her partner of twenty-five years. My grandmother always said you lose people in threes.

There is much going on with trying to figure out our finances here. Rob is working a lot of overtime these days. Losing an income is hard. Had I been fired I would have been able to get unemployment for up to two years but because I am unable to work physically, I'm not eligible. I am trying to straighten up today. Trying to think of something for Rob for dinner. Something I have here. Time to search the freezer I guess.
Have a good week.

Tummy Troubles

2011-10-30T10:22:00.003-04:00

This past week has been dealing with stomach/intestinal issues. On Monday I went to rehab but came home not feeling well. I had Chinese food for dinner and by eleven p.m. thought I had a stomach virus. I spent hours that night in the bathroom with the food fleeing in all directions.
On Tuesday I woke up feeling queasy still and had a light meal of toast and tea. For dinner I had jello and I was okay that night. Wednesday I woke up again feeling queasy and in fact had to cancel rehab. They ask you not to come if you are sick as you shouldn't be pushing yourself and for the safety of their other clients (patients.) Another day of light fare and by eleven p.m. I was once again on the bathroom floor becoming violently ill. I rested Thursday but had to be home for an oxygen delivery so couldn't go to the doctor that day. On Friday I finally made it there where they prescribed zofran. I didn't know it came in pills. They put me on it for 48 hours to see if it's just the residual stomach virus and now gastroenteritis due to the irritation. I hope that's all it is. The zofran makes you (or at least me) lightheaded if I move around and sleepy.
I was okay Friday and Saturday nights with the med. With any luck, it's now over but I have never been so violently ill before. If I get sick again they will have to run tests to make sure it's not something serious. I have a kidney doctor who is managing my fluid and meds and found that I have a kidney with many large cysts in it. I am so hoping this has nothing to do with that.
Other than that.....things have been good. We went out to dinner with my family on Thursday night. (I managed to pick and eat a spoon of this and bite of pasta.) The stone is in and just lovely. We had the dog groomed and he looks so handsome. He actually enjoys it! He has seen the same groomer for years who has always realized he is a shy animal and she is so gentle. They pulled out the remains of his winter coat, the under coat. Being in air conditioning all summer he didn't lose most of it and we had to keep brushing him.
Rob is doing some jobs around the house today. Small things but things that just had to be done. We got a surprise of several inches of snow yesterday! It's starting to melt now. Snow before Halloween sure feels strange. I am expecting about 100 or more treaters and I have the goods ready for them. I love Halloween but since my decorations have been up three weeks I will be glad to pack them away on Tuesday. I still need to switch out my summer/winter clothes. Maybe I'll start that today. Oh poor Rob.

Updates

2011-10-21T14:41:00.002-04:00

Yesterday I saw my lung doctor. I took her a beautiful flower arrangement that the florist let me pick the flowers for. Flowers always cheer me and she loved them. It just happened to be her anniversary too. She said my lungs sounded clear yesterday and was happy with my chest x ray. Baby steps. I have to have a new mask for the Cpap as the weight loss has effected everything. I will also have another sleep apnea test to see if that was altered as well.

Today was my third day at rehab. I am so tired when I come home but they work me. I didn't check the treadmill and it was on a 6 incline and I did my five minutes on it. At some point they told me to slow it down as I was working too hard. Since I was only going 1.4 miles an hour this was puzzling until the nurse figured out the incline thing.

The weather has been bad with all the rain. Wednesday there were high winds and after coming home from rehab I sat down to rest. I heard a loud noise and went to see what had happened. The umbrella was out of the patio table and the glass from the table top was shattered and everywhere. I had to wait for Rob to get home to clean it up (of course he worked overtime that evening.) The next day my mother came with a shop vac and we vacumned up the little pieces you just couldn't get with the broom.

My Dad's stone is in but at the place. The cemetery hasn't poured the foundation yet. Thursday will be his birthday and we are having a family gathering and going out to dinner. I think my mother is doing a little better. Today she went to lunch with one friend and then later went to someone else's house to see her dining room and take home the pumpkin bread Helen made her. We all need friends. Speaking of which, some of my friends (and former coworkers) want to come and see me. I have really missed a few of them. Something to look forward to.

Cardiac Rehab

2011-10-18T15:50:00.002-04:00

I had my first cardiac rehab session yesterday. It left me exhausted. While it may sound easy to those in shape, trust me, I am anything but. For over two years I was so filled with fluid and breathless I couldn't even go shopping. My muscles went on vacation. Yesterday they had me on a treadmill (flat and slow) for five minutes and I was starting to breathe heavily when it was time to stop. I then went on another machine called a Nustep for five minutes then a hand bicycle type of thing for five minutes. I also did warm up and cool down excercises. They had a cardiologist come check me out although I was monitored constantly by a portable monitor and a nurse was with me. The doctor said that I had to take it really slow as my surgery was only two months ago and it was a huge surgery. My heart is beating fast and they aren't sure if that's because it is so deconditioned. If so, this will help that. If not, I will probably need a medication. I came home absolutely exhausted and I am going to be doing this three times a week for several months. Hope I can make it.
They warned me to expect fatigue for 4 to 6 weeks. Glad that should be ending before Thanksgiving. Then hopefully, I will begin to feel stronger.

I have read several blogs today but was not able to comment. (Terre and Missie) When I signed in with my google account, it refused to recognize it saying I was not authorized to access the page. Then I tried my other google account just to be sure and it did the same thing, same message. Not sure why.

At last....Autumn :)

2011-10-14T11:07:00.005-04:00

Oh how I love the fall and always have. I am in my element and the peak of my being in the fall. I anticipate the cool mornings when one needs a sweater and the crispness of the new crop of apples which have been locally grown. I become giddy selecting the Halloween candy that I know will delight all the neighborhood goblins (I usually have over a hundred) and I never give the cheap stuff noone wants. I remember the joys of growing up in a subdivision where we had hundreds of houses to trick or treat at. What fun. I miss being able to take my child out or to get a costume. Most of his costumes were made by a previous neighbor for her children and they were wonderful. They got passed on to my niece, Julie. I get so excited as the night approaches although I do get worn out keeping a barking dog under control while dispensing treats. The dog has a little cape he wears that says "King of the HoundDogs" and is bejeweled. He doesn't mind.

When Halloween is over and the decorations are put away I bring out the Thanksgiving decorations. This includes the salt and pepper turkey shakers that were my grandmothers but she gave to me about forty years ago. There are also some turkey candle holders and carved wooden pumpkins. I cook most Thanksgivings. I love Thanksgiving. It's a day to reflect on so many things and I do. We use the good china and silver and glassware that day. The pies will all be homemade and sometime in the afternoon we will all take a nap. The last few years my sister and I prepared dinner at my mother's because Dad couldn't be moved. This year they can come here again. Dad's birthday is Oct. 27th and he has a beautiful fall wreath on his grave that has a ribbon that says "Dad". We expect his stone to be delivered in the next ten days. Dad will be missed but I am grateful that his suffering is over.

The day after Thanksgiving people begin shopping for Christmas. I shop all year but the day after Thanksgiving is when my Christmas cards get addressed and mailed. They are already purchased. I love Christmas. It's not the gifts (although I do love a good surprise now and again.) It's that people are all in good cheer and showing and giving love. I love the spirit of giving. This year funds will be low and gifts will be more modest (except for my Mom who needs extra TLC right now) but the smallest gifts can be giving with great love. I guess Christmas is winter but fall is the season where we are preparing for it. I love the hustle and bustle of the season. It's also the time I bake lots of cookies. I often have Christmas dinner here too. It's the only time I wish I had a bigger house. When we downsized we have an eat in kitchen but no dining room. The rest of the year we have plenty of room though.

As you drive along and see the leaves think of this as the season of gratitude.

Today, October 14th, marks two years that my grandmother left us. Of all the many wonderful people in my life, my grandmother is at the top of the list. I strive to be like her (although I often fall short.) She lived in a very modest home but anyone who came to her door would receive a wonderful meal which she threw together in minutes. She was a marvelous cook and baker. She could soothe any problem you had by listening intently and trying to find something positive in it. Everyone in her life felt they had a special relationship with her. They did. She gave each person what they needed. When she learned she had breast cancer she didn't tell her family. She refused treatment because of her age and the doctor told her it was not going to advance quickly. The doctor was wrong and by the time she realized how bad it was, there was nothing that could be done to stop it. That was so typical of her not telling us so we wouldn't worry and she was living alone at that time and going through this by herself until she had to tell us. She was SELFLESS.

There was nothing bad that could have been said about her. That's what impressed me so. At her funeral there were only words of how much she had done, helped and loved others. How wonderful was that?

Clara Virginia Wolfe Cosgrave I am so very grateful to have had the priviledge of being your grandchild and your memory will love on in my heart until the day I leave this world and hope to meet you again in another.

I thank God for you.

Getting Set for Rehab

2011-10-12T18:09:00.002-04:00

I got my reports from the stress test and echo. To be honest, somethings were great to hear and one was not but I'm not prepared to think about it let alone talk about it now. I have four more months for my heart to heal and I am going to stay positive in my expectations. The tests showed I am strong enough to start cardiac rehab. I had to go one week for the interview (which I did on Monday) and next Monday I have some orientation scheduled where they will have me putting on my electrical wires and actually doing a few minutes of exercise. They watch the monitors the entire time you are exerting yourself to make sure it's not too much. Needless to say, I will be one of the youngest people there. The sessions will be 18 to 36 depending on what the doctor feels is necessary. I wasn't feeling well the day of the interview and came home worrying about it. The nurse who listened to my heart told me she heard a wheeze in my left lung (I had heard it the night before) and I nearly cried. The pneumonias have always started this way. When I got home I was dizzy and just sat when I noticed I was developing a sore throat and suddenly needed to use the bathroom. It must have been a bug. I moved my flu shot which had been scheduled for Tuesday to Friday afternoon instead. My pain situation is better. During the day if I do nothing I am fine. Of course, I need to be moving and doing small things but the pain is tolerable. At night the pain is a bigger problem. Sleeping on my stomach hurts and sleeping on my side hurts. I have no pain if I lay flat on my back but unfortunately it is nearly impossible for me to sleep in this position. My CPAP mask needs replacing but I see the lung doctor in ten days and want to wait for her to see if she can find me a better fitting mask. It now seems too big.

I am starting to look through bins in my garage to see what things I had picked up over the year for Christmas. Each year I pick up things I know someone will like when I find them instead of waiting for the last hectic minute and buying things that they really don't want. My one brother and his wife are not exchanging this year so that's two less gifts to buy. I feel awkward about it but money is tight for me. I have bought some clothing items for my husband and son but need some things that will make their eyes light up.

Each morning I wake up and tear up with gratitude that I am still here. It's been really rough at times but Rob is always here cheering me on. One of my friends I hadn't seen in a long time calls nearly everyday now to check on me or offer to help in anyway she can. I rarely take her up on it but the thoughtfulness of her gesture means so very much. My family has been much more supportive with this surgery too. I have so much to be grateful for. What are you grateful for?

Busy Week

2011-09-30T11:19:00.002-04:00

On Wednesday I went for my stress test. In more years than I can count, I was not able to walk on the treadmill and had to have an injection instead. This year they put me on the treadmill itself. I was nervous since I am still recovering from the surgery but they assured me it was safe. They set my target heart rate at 138 and told me I would walk for a minute and they would speed it up and then start an incline and things would get more intense after three minutes. After just two minutes I had hit my target rate. While that may sound good, my heart beats very fast right now. With that my blood pressure rises. They stopped the test and told me that was a baseline to see whether I should go to cardiac rehab. If so, I will have to take it slow to start out with and be closely monitored. Right after that I had an echo done. I am still waiting to hear from the cardiologist about these tests and hope it's sometime soon. He has called me late in the evening, and on weekends. He's a busy man. Yesterday I went to see my kidney specialist who was very pleased. I am down another three pounds and there seems to be no fluid that I am retaining right now. I confessed that I have been eating some salt now because my morning weights show that I am no longer retaining fluid. I am still on the medication to prevent that and I may be on it forever. That's okay as long as I am able to breathe. She thought I looked wonderful and much better than most people who are just 8 weeks post surgery. Everyone says that but my face is so thin now and my neck is a mess. I am thinking I may start wearing scarves with everything! I have some dark scars on my neck from where my swan was sewn in. My chest scar is not straight and still quite dark and much longer than the old one. I refuse to dwell on those things because I can breathe once again. After struggling for breath for the last year this thrills me. I have to remind myself to take slow that my recovery will be four months longer. In the meantime I am reading and keeping busy. I just read The Help. It was a good read. Have a great weekend.

A Surprise Email

2011-09-27T16:19:00.003-04:00

Last week we tried to fix my mother's old desk top. Impossible. I spent two shopping trips with her to find a laptop and printer and today she got one. When I moved her AOL email over to Google she found many old emails she hadn 't opened when she was still caring for my Dad. In one was this picture my sister's friend had taken of them the Christmas of 2009. I had forgotten he looked so alert then. This past Christmas he was disconnected from most of Christmas and us with a faraway look. It's been six months since he left us and I still miss him. I still cry when I see pictures and remember how difficult the last two years of his life were. Noone could have convinced him that he would have ended up so helpless. Now he is gone and my mother struggles and living to regret that she didn't want to be bothered with information that we know struggle to find. Their stone has been ordered and should be there for his birthday, Oct. 27th. We are hoping to have a family unveling of the stone followed be a gathering. I can hear my father laughing at that saying "Wow they throw this shindig for you when you can't attend. Is that fair?" My father's death has taught our entire family something: you truly don't know how much you love someone until they are gone. No matter how much you think you know what it will be like, you can't imagine. Time goes on and the freshness of the pain lessens but the void remains. Life goes on and you must too. It's what he would have wanted.

Saturday and Serenity

2011-09-24T16:35:00.002-04:00

Today is now Serenity Saturday. We have done all our chores for today (which include a few more hours trying to get a printer to work with my mother's computer), getting photos printed from a flash drive, getting take out lunch and we are home and hoping to relax. Since my visit with the heart surgeon, I feel more relaxed. I am so relieved to know there is no fluid currently in or around my lungs. First time in about two years. My breathing is easier.

I really love having Rob home on weekends. We have known each other twelve years and I still enjoy the ease I feel with him and the way we can finish each other's sentences (which began happening after a few weeks together.) My life has never been easy and I know what it's like to only be able to rely on myself. If I have to do that I can but it's just so much easier with someone who shares it all with me.

Great Report from Surgeon

2011-09-23T13:26:00.002-04:00

Yesterday Rob took off work and drove me to Philly so see my heart surgeon. What a wonderful man who took so long to view and point out things on my xray and answer every question we had. Surgeons like this are rare. He told me that I looked great and my heart sounded strong. The xray showed no fluid in my lungs or pleura at this time and I was so happy. (It is too early to be certain that this problem will not reoccur and it will take several months to know.) My sternum is healing enough for me to drive and lift light things. I have some pain still and it's worse in two areas. One was the top of the sternum under the neck. He told me he had cut it all the way up (this wasn't done the first time.) The other pain appears to be a rib injury. He told me he had to open me up much more than the previous surgeon had. He showed me where he had to go to get the mitral valve in. Not only was it in an awkward place but the valve itself was much larger than the first. He also replaced my right coronary artery with a vein from my leg (leaving me a small scar of about two inches.) He did an excellent job. There are still problems and next week I will be undergoing a stress test and another echo. If they are good, I will then be starting a cardiac rehab program to build up my strength.

My mother wants to have a family dinner on my father's birthday. She is really struggling now. This is the problem when a spouse is so dependent on the other. My father did everything: made every decision, paid the bills etc. She has no confidence about doing these things and asks her five kids who all give her different answers, leaving her even more confused. Case in point: her computer. It isn't working properly and she can no longer read her email. We went there yesterday and tried for hours to fix it and her printer. No go. I had her all set to get a laptop which would be so much easier for her since her old pc is upstairs and she spends most of her time downstairs. She began calling my brothers and one told her it was a mistake. Now she doesn't want to do anything feeling she will be making a mistake. It's frustrating to deal with.

It's raining here and rain is forecast for the next few days. Blah. My spirits are good and overall, the pain has lessened from the surgery. I am oh so hopeful that things will continue to improve.

Rob's scribble and more

2011-09-16T10:33:00.003-04:00

Firstly, Rob did did a "scribble project" (he loves to draw) and they posted it on the website along with some personal information about us. Please check it out: Scribble Project. I was very touched by it.

Last Saturday was my niece's wedding and we had so much fun. Of course, I missed dancing (way too painful and too risky if someone bumped into me) so I kind of moved a bit in my chair. It was on the beach and lovely, the temperature and sky were perfect and some seagulls quietly attended. My sister is a very private person and doesn't want anything written or pictures posted about her. I respect that so instead I will post a picture of Rob and I attendees. I had this dress altered and it was still too big. My weight seems to have stabilized now but I am down about 40 pounds from the winter and had lost 30 pounds the previous year. Having to give away most of my clothes. I had saved some clothes from about 20 years ago that were expensive. They now fit me but are so out of style (shoulder pads etc.) that I will end up giving those away too.

I saw my cardiologist in NJ and he said I looked great. I was somewhat disappointed that my heart still has problems and that we won't know until December how much the repair helped and if the main issue is really gone. I go on the 22nd back to Philadelphia to see the surgeon again. On the 28th I have a lot of tests to undergo to determine if I can handle some cardiac rehab. My incision is much less painful than it was but the muscles going across my chest and into my shoulders are still hurting. I am now permitted to drive short distances locally but it is painful and only done if I have no alternative. I am moving about, breathing and functioning better than I was a few weeks ago. They tell me it will be late December before I have recovered. I am so very grateful for the improvements in breathing alone.

Weather has changed. Yesterday started out at 80 and temperatures dropped twenty degrees in a few short hours. It's really cool out today. Duffy with his two coats of fur is in heaven! Nothing makes him happier than a cool breeze blowing throw that luxurious coat.

I'm going to take it easy today as I had company yesterday and had to go for a chest x ray. Been a busy week with lab tests and the paperwork that never ends.

It's a weekend and that means Rob will be home with me for a few days. :) Have a great weekend and just think the new crop of apples will soon be here.

Labor Day Weekend

2011-09-03T16:15:00.002-04:00

Labor Day weekend stirs a lot of emotions for me. September third is the day my one grandfather died. (He had been misdiagnosed with pneumonia and when it hadn't cleared up in two weeks they discovered he had stage 4 lung cancer and he was gone a few days later.) It was also the birthday of my first love, my teenage love, whose heart I broke. He died ten years ago but I still remember him and our three years together. He taught me what it was like to feel truly loved. Labor Day weekend many years ago was a day spent waiting for my son to be hospitalized for a bone marrow and on September 4 we learned he had leukemia but it would take several more days to find out what kind. I can still remember the physical feelings I experienced when they said those words and I fell into a chair in utter shock. I am so grateful that he survived it, that we got through the three and a half years of chemo he needed and that over the years he has learned to let a lot of anger go. It's hard to lose your junior year of high school and return your senior year when you feel you no longer fit in. It's hard when the time comes to try to return to what was your normal life before.

Today Rob and I slept in until almost 8 a.m. Normally the dog will not permit this. I took a shower while Rob made his first cup of tea and then I made a list of things that needed to be done. He got dressed and bolted out the door to begin the shopping. He went to Staples and got ink for our printer, went to the supermarket and got several bags of groceries, then on to the Home Depot where he got a new shower nozzle. This one can be hand held and will be a big plus when Duffy needs to be shampooed. Our old one was a water saver that felt like you were being teased as opposed to having a real shower. Hope this is better for that purpose. Rob came home and installed the shower head, dumped and washed the litter box, weeded the flower garden, had lunch and read. Now he is taking a much needed nap. I hope he can find time over the next three days to kick back and relax. Our lives have been so hectic over the past few months........
Yesterday I got a call where I had to regive all my information from my previous jobs. I realized I was about to bounce a check (having finally balanced my checking statement) and called my Mom to run me to the bank for a quick deposit. After doing that I took her out to breakfast and I took her to Costco to get gas (she isn't a member). We went into a candle store for a few minutes so I could pick up a gift I needed and then home again. I can't shut car doors due to the weight so I feel like a child being placed into the car. When we arrived home there had been several messages left from my medical providers. It seems they all knew my health insurance was cancelled as of August 31st. I explained that I had secondary insurance which was now primary. They told me that they were told it was not and I needed to get this straightened out. The company who furnishes my oxygen wanted to be able to verify right away that I would be covered. I was so exhausted and frustrated. Less than six weeks after the surgery I have to go through all this? I had called the insurance company on Monday and explained all this to them and faxed over what they requested that very day. I called them again and "Monique" advised me that I would need to hold while she investigated. I was put on hold and after about half an hour I hung up. NEVER once did she come back on the line. That is considered call abandonment where I have worked and grounds for firing. I called back and got the person I had spoken to before on Monday. She had not received the fax I sent, told me to resend it and she would call to confirm she had it as soon as she got it. An hour went by and I sent it again.....after another hour passed I called again and got Susan. Susan apologized and explained it takes them 48 hours to receive faxes (thanks for all the bs Sadie) and that she would call my old insurance company and have them verify on the phone and she would update the record herself. I was surprised: someone who had intelligence AND initiative unlike the other two reps. I held on about ten minutes and Susan came back on the line telling me she had all the information necessary and would update the system. She then asked if I wanted her to call the providers and verify my coverage to them. Impressive! I told her I would take care of that and thanks her for her help. So about six hours later this was finally resolved.
As soon as my new information was entered a different provider called me to let me know that it was all updated. I'm just thankful that my brain was working well enough to handle all this. It hurts after I hold the phone for too long. Good thing physical therapy is covered....I might need some.
Have a great Labor Day weekend!

Anniversary

2011-08-31T14:37:00.004-04:00

Today is our ninth anniversary. I met Rob two and a half years earlier. I had been so unhappy with my former spouse that Rob was actually afraid to propose thinking I might not take another chance. Emotionally I was still healing and it took time to release some of the things that I had to in order to move on. I had envisioned myself being alone for the rest of my life. I would have a dog and lots of family members but I really felt that a husband was not something necessary for my happiness. About that time I met Rob. He was fun and patient and everything that I would have wanted in a man but I was not going to let myself get caught in that again. No way! I told Rob this on our first date and he told me marriage was not something he was interested in so we were both at ease. That's so funny looking back. On our first date it was like we had known each other for years. I was never so comfortable with anyone on a date and he made me laugh. I had forgotten how to laugh. Some two and a half years later we got married in an intimate ceremony of about forty. Our song was "Come Rain or Come Shine". We had both been listening to that song one day and blurted out at the same time "This would make a great wedding song!" Sometimes we actually complete each other's sentences. I swear that he can read my mind at times!

When most people take vows they don't think it through. Sickness? When you're young and invincible who can imagine that? Just two years later Rob went through my first open heart surgery with me. About six months later he went through two surgeries with me for breast cancer. Now, a month ago he went through the second heart surgery. It's a lot. He has never complained one time. I have apologized for having to ask him to get things/do things for me and he tells me that I have no reason to do that. He does everything with devotion and caring.

Sometimes I think that I might have been too afraid to have taken a chance on Rob. I would have missed out on so much. I am so grateful for Rob and his love. I wish everyone would be loved like this because it's what gets you through the really hard times. Thanks to my friend Diana who encouraged me to make my own decision but gently reminded me that love might not come again. Rob (like me) is not perfect but he is perfect for me.

The Weekend

2011-08-29T14:02:00.002-04:00

The newscasters really felt Irene was going to do some rather heavy damage here. Thankfully, little was done except for some people losing power (most already have it restored) and some road flooding. I realize that if your road is one that is flooding and cutting you off from getting to the next town, it is anything but a minor nuisance. One neighbor lost a tree but we did okay. The rain and wind was strong Saturday evening and I slept through the night for a change. Normally the sound of rain hitting the windows keeps me awake.
Rob and I had someone come in on Friday and put a pull down door and attic stairs in for us. Since we don't have a basement we rely on our attic to hold holiday decorations and such. The contractor did a marvelous job and the stairs are metal and sturdier than the wood ones. I have not been in my attic since my first heart surgery as I could no longer pull myself into the attic. This will be a great help to Rob and I. The downside was this was in a walk in closet and we had to remove the clothes. I wasn't able to carry more than two hangers at a time so my Mom came and did a lot of moving my clothes. Some of my clothes are twenty years old! I always used to buy quality things and take good care of them so they are still in great shape, although now that I can fit in them again most of them are "out of style". Although I buy more classic than fad clothing, shoulder pads? Oh no, I forgot how badly they looked. I filled three bags for donating. Trust me, there is plenty left! My clothes vary in sizes. I have a wedding September 10th and my dressier dresses are all too big and would need alterations. I am debating between two of them. They are both black but one is an empire style with a hot pink bow/ribbon and the other is piped in a lime green but has a full skirt. While I can get the top altered on the later I cannot get the skirt taken in. I've already had the bodice taken in.
Each day finds me with a little more mobility and a little less pain. The nights can be troublesome as I move in my sleep and that can wake me up. The pain meds or Tylenol have worn off and getting out of bed is tricky to get some more.I can keep them on my nighttable but need more water anyway.
I am doing so well. More later.

Staples out: 31

2011-08-26T10:18:00.002-04:00

Yesterday I finally got my 31 staples removed. The top by my neck and the bottom really hurt. Hard to believe they were in there a month! First surgery they only leave them two weeks but a "redo" takes longer to heal. My scar is hot pink and long. YIKES. Good thing I am not vain. I have a wedding in two weeks and there is nothing I can wear that will camoflauge it. I am also worrying about clothes rubbing on it. Still cannot drive for two to four more weeks but I don't think I would have stamina anyway to shop so that's okay.

I posted a comment answering all the comments on the previous post. I love your comments and good wishes. People have offered to send meals and other generous things. I don't have much of an appetite and it hurts to do most things that require use of my arms. I have to be careful now that the staples are out, the incision isn't 100% healed yet. I'm not allowed to cook and I think that is the thing I miss the most. I love to cook and bake. The Fall is coming and there will be lots of time to bake. We just have to get through the hurricane first this weekend.

And the beats go on.............

2011-08-24T10:55:00.002-04:00

The past few days have been really tough for me. The more I do, the more pain I experience. I am not really supposed to be doing anything but when I am home alone I make myself toast or tea and even that hurts. Moving hurts.

I have so many things that I simply must take care of. My employer fired me and my health insurance ends August 31. I had to get onto my husband's at that time. That meant checking to see that all my doctors accept his insurance. Good news on that front: two that were out of network on my insurance will be IN network on his. Problem is I had met ALL my deductibles under my insurance and will now have to meet them on his. My income has ended and I am not eligible for unemployment. My short term disability is exhausted. Thankfully, I had inherited a few thousand dollars about a year ago and held onto it and am using that now to subsidize our bills. Thank God I didn't run out and do something extravagant with it.

My days are rather quiet here. I take a few cat naps throughout the day. During the day I try to take Tylenol only then the stronger pain med to sleep. Some nights I cannot get comfortable and just can't sleep. Yesterday I was laying in my recliner when it began to vibrate. My windows shook like a huge wind was coming. The cat stood up on the sofa like what is going on? I then felt the sofa which was also vibrating and I thought perhaps a jet had crashed. Put on the tv and quickly learned it had been an earthquake. Interesting. Things just get stranger and stranger.
I am supposed to get my staples out tomorrow. There are 31 and very irritating and have been in almost a month. I want them out but it will be painful because of the sensitive area they are in. I don't look forward to that part. On Friday a man is coming to put pull down stairs on my attic door. That way Rob can access the attic without all the ordeal of carrying a ladder upstairs etc. which is not safe anyway. This Christmas will be so much easier as we keep our prelit tree and all up there. I sense Fall in the area. It's always been my favorite season. So glad I will be here to enjoy it. The doctor said I am "resilient". Two time cancer survivor, two time open heart surgery survivor with two mechanical heart valves. Yes, I think that is the word for me. It will only get better from here. The future's so bright I gotta wear shades. :) My only goal for the future is to get my health back and I feel it coming.

Finally a posting

2011-08-13T18:29:00.003-04:00

Dear Friends,
Thank you for all the emails, cards etc that I received from you all showing your concern. Judith HeartSong made me a card that is a work of art, so lovely. The first few days were going swimmingly (under those circumstances) but then they told me that the surgery had caused me to have "heart block". Never heard of that but I had an auxiliary pacemaker which was doing all the work. The surgery I had can traumatize the heart through the swelling especially and leave you with this condition permanently. They thought I would need a pacemaker before leaving the hospital. The initial surgery was very difficult but the surgeon believes it will be successful. It will take six months to know for certain. After a few more days the heart block seemed to have resolved itself and they were able to turn the pacemaker to back up only with an alarm set. We were all thinking that we had escaped another surgery for me and were thrilled. Over the next few days I developed some slowing down of the heart rhythm and they once again became concerned. Just when they thought I was out of the woods totally I had a "pause" in the heart. My heart stopped beating for over five seconds and I was rushed into ICU to be closely monitored. I was conscious the entire time and it was unpleasant, feeling like I was fighting to remain conscious. Rob was allowed to spend the night in ICU with me and I was so relieved about that. I knew if it happened again I would be shocked and I did not look forward to that. My heart straightened itself out and two days later I was released to the step down unit once more. I am home finally.
I am tired and in pain. Imagine having a sternum that was broken not once but twice, wired together and a swollen heart that was removed from your chest, had a piece sawed out of it, replaced with a mechanical piece. I also received a bypass to replace a radiation damaged piece of my coronary artery.
Does it sound like I am complaining? I'm not. When I realized I had survived the surgery, tears of joy ran down my face. More time with those I love. I know that the next few months ahead will be tough but I am hoping and praying to hear late December that my heart is functioning well. Regardless, this was a surgery I had to have. I was in heart failure and it was the only possible fix.
Will write more soon. Thanks for keeping me in your thoughts and prayers. I was counting on you and you didn't let me down.
:)

nelles update

2011-08-08T08:23:00.002-04:00

hi everyone, Rob here. two weeks today still in hospital,

returned to ICU early Saturday morning. complications being addressed, hopefully return to step-down unit sometime today. surgery went well. thank you all for your emails, comments and prayers. ill post more details when i get home.

Random Thoughts

2011-07-23T05:49:00.004-04:00

Yesterday was a grueling day. It began with a trip to two banks and a pharmacy. It was 107 outside with poor air quality. My lungs were not happy. I came home and began the arduous task of filing for social security disability. My company's long term disability carrier told me that I had to and if I didn't they would be deducting the amount from what I would get. Apparently, if you are out of work a year you are entitled to this. Besides, there is no guarantee that the surgery will eliminate the other issues, although I am optomistic about it. We shall see. It took me literally hours to find dates of hospitalizations, addresses of doctors and they asked for lists of tests done. Their system didn't allow for over twenty CT scans done in the past two years. I felt they had plenty to work with anyway.

I am on a low sodium diet with strong diuretics to keep the fluid off. This has lead to some real constipation issues. I was in a lot of discomfort last evening.

I am dealing with some friends who have real issues too. They want to lean on me about their issues and it's hard to be sympathetic sometimes. Many people create their own problems and think they are much more difficult than mine. I would love to have them walk a mile in my shoes.

I came across a poem I love. I love ee cummings. I love Rob.

i carry your heart with me(i carry it in my heart) i am never without it(anywhere i go you go my dear;and whatever is done

by only me is your doing,my darling)

i fear

no fate(for you are my fate(for you are my fate,my sweet)i want

no world(for beautiful you are my world,my true)

and it's you who are whatever a moon has always meant

and whatever a sun will always sing is you

here is the deepest secret nobody knows

(here is the root of the root and the bud of the bud)

and the sky of a tree called life;which grows

higher than soul can hope or mind can hide)

and this is the wonder that's keeping the stars apart

i carry your heart(i carry it in my heart)

Sleepless in Englishtown

2011-07-20T01:51:00.004-04:00

Today was really a rough one for me. It started out well with the new mattress and box spring being delivered and the recliner. I was expecting a friend to come for the afternoon. I had just made up the new bed when the phone rang. It was my employer. They made an administrative decision to let me go. Although I felt this was a possibility it was shocking to hear. I actually broke down and cried on the phone. While I can Cobra my health insurance, Rob was on my dental and as of August 1 we won't have dental until we can sign up with his company for the next year. I also loose my life insurance. What I don't understand is why they didn't let me know sooner. This call put me on an emotional roller coaster.

My first feeling was shock and disappointment. In October I would have been there four years. The first two years my attendance was stellar and so was my job performance. In July 2009 the health issues began and I was out on disability several times but always made it back within the short term disability period. This time, I couldn't. Next came a wave of anger at the doctor who had been my cardiologist for about eight years. He failed to find the problem and the fluid back up from the heart was keeping my lungs wet and causing me frequent bouts of pneumonia as well as leg swelling and I was exhausted for much of that time. In hindsight I am amazed I was able to work at all. Most days I came home from work and ate something, then went to bed. I went to the doctor so many times with swollen legs and even when he saw that I was on oxygen all the time and so short of breath he told me it couldn't be the heart. How wrong he was. Now I have lost income for two years, lost health (my lungs will never be the same), and now my job. I can't explain how he laughed when I made inquries about all these issues. My lung doctor repeatedly said she thought it was my heart and he just shrugged off anything she had to say. In the end it was she who was right.
Tomorrow my mother wants to take me and my sister-in-law to Lancaster for the day. A diversion from all that is happening. Not sure I am up to it. I can't even sleep tonight and there is a heatwave here in the NorthEast. Going to be 95 again tomorrow and over 100 Friday.
I am moving forward. Next week will be so difficult for me but I have to keep telling myself that I have to do this. Without the surgery the heart failure will overtake me and my existence will be miserable fighting fluid overload. I want to get through this and move onto a better place, where I am once again living.
This is so hard on those who love me and I hate that they are having to go through this with me. Please keep us in your thoughts and prayers. I won't be online after Monday, July 25 but surgery is 27th.

Retail Therapy

2011-07-17T07:47:00.003-04:00

Last week my Mother got a check for life insurance from my father. It was a small policy and she decided to divide it amongst her five children. I thought that was nice but of course, it's difficult to enjoy receiving money under these circumstances. You feel guilty yet grateful.

Rob and I have had many things we have needed for a long time. Our favorite chair (a chair and a half) with the wonderful old world upholstery is worn out. The cushions are crushed and it would be so costly to replace them, it would make no sense to do it. Also, we are in a smaller house now and it's too big for the place we want to put it in. Yesterday we bought a much needed recliner. The cardiologists have wanted me to elevate my feet for years and suggested one. I always hated how large and bulky they were and yesterday I found one that was just normal chair size and would work for us. We bought it. Then we wandered over to the carpets and found a lovely new rug for the room so we ordered it. I love it. We then made our way to the bedding department and treated ourselves to a very good mattress and boxspring. It's very firm which is what both of us need for our back issues. The chair and sleep set will be delivered Tuesday. The rug will be shipped within the next few weeks. We then went to LongHorn for lunch. They have a salad I love there, the Sonoma chicken salad. After savoring our lunch, we went to the mall and I got a screen protector put on my replacement phone. I also got a better case for this one. It felt so good to have money and shop without worrying about bills coming later. I spoiled myself. We came home and had a nice relaxing evening. The surgery date approaches. I have yet to have my claim approved and the company tells me neither my employer nor doctors have submitted paperwork and that is my responsibility. I am not sure if I can get this all taken care of before I am admitted into the hospital July 25th. Trying not to sweat all this stuff. I am in such good physical condition, compared to where I was six months ago. I pray that in a few more months I will be getting stronger and better each day.

Hot....Hot...Hot

2011-07-12T07:34:00.004-04:00

It's going to be a sweltering 95 today. I wonder what it will be in Florida since we are in the NORTHeast. On Monday my mother-in-law is taking her other son, and our niece to DisneyWorld. They have never been before and I remember when I went many years ago in July and knew I would never do that again. This is why Fall is my favorite season.

In my last post I mentioned reuniting with a friend and since then I received an email and later a phone call from our third friend. I am so happy. Believe me, I need all the joy I can find right now. My mother is feeling sorry for herself. Understandable because she lost her husband of 60 years just four months ago and doesn't know how to go on without him. My Dad made all the decisions. She has five children who would all advise her differently what to do. Two family members have had some differences and involved others and she gets pulled into it all.

On the bright spot my sister gave a wonderful shower for her oldest daughter on Saturday. It was in a nice restaurant and beautifully done. This niece is my Godchild and I got her the Emeril cookware on her list. Wow! The prices of the gifts are overwhelming compared to my original wedding shower so many years ago. (When I married Rob my matron of honor lived in another state and I didn't have a shower but since I had a house full of stuff, I didn't need one.) My niece got a Dyson vacumn and beautiful comforter sets, everyday dishes at $100 a place setting and china. On the way home my Mom said "to think that I received tea towels mostly as gifts." Different world back then. It was a joy to see her so happy and her sister who will be her maid of honor. I am hoping and praying I will be up to the wedding early September. Even if I am in a wheelchair because I can't walk far or huffing on an oxygen tank, I plan to be there. This is a picture of me with the bride to be. I scrunched over to put my head on her shoulder. I had a great summer dress but it was so cold there I had to have a sweater on the entire time (haven't replaced sweaters and they are all too big.) Have to wash the floor because my mother's pastor wants to come visit me and pray with me today. Yesterday I was short of breath again but I think it's because of the air quality and extreme heat. Stay cool everyone.

A Gratifying Tuesday

2011-07-06T09:30:00.002-04:00

Yesterday I did something that was long overdue. I went and made things right with a friend that I love very much. When I was having my last heart surgery this friend was supposed to go out with myself and another friend and at the last minute her then boyfriend called and insisted she see him that night. (She just jumped through hoops for this guy and they are now broken up.) I was so hurt. Later when I came home from the hospital and she called I wouldn't take her calls. That year she sent me flowers on my birthday and I sent her a note thanking her for them but telling her I was so disappointed in her as a friend. Now that I am older and wiser I like to think of a quote I once read "Stroke it don't erase it." A few years ago I began to think of all the times this friend WAS there for me, and there were plenty. We met when our children had leukemia in a support group. I was in her home the last weeks of her daughter's life and there for her afterwards. That's what hurt me so badly. I now realize this: she made a mistake. A friendship shouldn't be lost because of a mistake. So I have thought about her hundreds of times. Yesterday I was out running errands and I got detoured and found myself in front of her development. It was karma and I knew it was the right time. I rang her bell and she opened the door. We both stood there hugging and crying for a long time. Then she invited me in and we sat down at her kitchen table (as we have for twenty years) and had coffee. There is not much as gratifying as a visit with an old friend. No one else understands what I went through with my son. She was part of it. She was always wonderful to him and like me, he loved her daughter. I explained to her that I made a mistake and she said "Don't explain. You're here and back in my life. That's enough." She then called her friend to tell her and she was thrilled also. I am now trying to reunite a third friend of ours. I have mailed her a letter this morning. Let's hope soon the three of us will be together again. One of the best times of my life was when they took me to Atlantic City for my 40th. The following day they had a surprise party for me as well.

Poor Air Quality but Beautiful Out

2011-06-29T16:55:00.002-04:00

For two days they have warned of the air quality. It has been beautiful and sunny though. In the evening it's been cool enough to enjoy the patio a bit. For me I love the patio and watching the bird feeder and bird bath. Our next door neighbor has ducks and some of the tiny babies keep wandering into our yard. Rob leads them back (they follow him like he is the Pied Piper) and I even got a few pictures of him holding one. They make so much noise for their tiny bodies. Our pets are intrigued by them. They are contained in our fenced in portion of our yard so no threat to them.

I have had so many phone calls from the Univ. of Penn. Hospital. They pay attention to the smallest details. I should be admitted a few days before the surgery as I will need to go off of the Coumadin but instead be put on Heparin.
For those of you who are latecomers to my blog, I have had this surgery previously, with my aortic valve. It's a big surgery and the normal procedure is for them to cut through the sternum and wire it back together. Some people say it is not very painful and others find it to be very painful. It seems that more people who receive tissues valves (such as bovine or porsine) have an easier time of it. I have a mechanical valve and will be receiving another. I ran into some complications with my last surgery and I ended up in CICU for over a week. (I had been told that I would be in the hospital for a week total.) After I left ICU I spent another ten days in a step down unit. I experienced hallucinations after being given a sleeping pill and ripped out all my ivs. I was confused and when their was a power failure and I was on a ventilator I became so panic stricken. It's not just the physical that you deal with. I do believe I am going to the best place and will be using top notch doctors. The doctor who will be performing my surgery performs heart and lung transplants. He is prepared to deal with problems.

I continue to do very well with breathing. For the first time in months I am able to leave my house without an oxygen tank and it is indescribable the joy I feel when I just walk across a parking lot without gasping for breath. I swear that I will never.....never ever....take breathing for granted again.

Feeling Joyous and Grateful

2011-06-23T19:25:00.002-04:00

I am hopeful, oh so hopeful today. My wonderful pulmonologist, Dr. Gilbert, did my pulmonary function tests and they were greatly improved. Numbers such as 43% changed to 80%! I don't know who was happier the doctor or me. She had to fax a note to my employer today. I won't be able to return to work until winter. Once I have the surgery which wouldn't take place before July's end, it will be along recovery, including cardiac rehab. I am so hoping that my company will allow me to be on long term disability until that time. Financially, it won't be much at all but what is my life worth? Certainly worth more than the money I would earn if I worked but watched my health steadily decline. There is a window of time a diseased valve can be replaced but once things happen that would make the surgery unlikely to have a good outcome, that option is gone. I cannot wait. This is a big surgery. I will go into the details at another time but they will be doing two or three things at once. What I have is serious, but there is a "fix" to at least make it much better if not fix it altogether. The people in the doctor's office were surprised when they saw me. In the past month I have lost 24 pounds. Most of that was fluid that had accumulated because of the heart problem. About seven pounds came out in the chest tube and the rest has slowly come off with medication. I had to buy new clothes which has been fun except that my short term disability money has been exhausted. No pay unless I get approved for long term. Even so, that will be a fraction of what I made. Over the past two years we have lost so much income and had so much medical expense. Thankfully, I have had some money put away for medical emergencies such as this. We'll get by and what good is money if you don't have your health anyway?

Even though I am facing another heart surgery (and it's scary) I am so thankful that I live in a place where I have this option. I am so thankful that Dr. Gilbert went the extra mile and brought in cardiologists so we finally learned what the real problem was. The glass isn't half full, today it is brimming with hope. :)

The Waiting Game

2011-06-20T14:41:00.002-04:00

I am still waiting on the final word of whether or not the doctors in Philadelphia will proceed with the surgery. My last set of lung functions tests (taken while I had so much fluid in me) were discouraging and they want to see better results. Sometime in the next few weeks I must have those tests redone. I am also getting yet another CT scan with contrast to clarify something else they found. Today I am down about twenty pounds from where I was a month ago. I now weigh about sixty-five pounds less than I did when I had my heart surgery seven years ago. That is without any surgery or diet pills, just lost the weight, particulary over the last twenty months by not eating. Some of it was fluid.

This morning I got up early and went grocery shopping. I am trying to eat a diet of mainly vegetables and proteins with some dairy. Eating little bread, low carbs and low sodium. I just bought an ice cone machine so I can make them and have them with sugar free blue raspberry flavored "syrup". It seems that syrup should be thick and instead it has the consistency of water but is flavorful. I also went to a local farm and bought three hanging baskets. My yard seemed naked. I won't be doing a lot of planting I have in the past. While I am breathing much better, bending over is a bad position for my lungs.

Yesterday was my first Father's Day without my Dad and I dreaded it. We bought a nice wreath for his grave that had a ribbon that said "Dad".
Tomorrow I go to the cardiologist here. I now have duplicated doctors in Penn. Sometimes I have to put myself on autopilot to do what I must. If I begin thinking of all that could happen it's overwhelming. One day at a time.

Home Again (Finally)

2011-06-13T18:07:00.002-04:00

I was admitted to Univ of Penn Hospital on June 8th and was discharged last night about 5:30 p.m. I wanted to sprint my way out the door but Rob insisted I leave in a wheelchair as it was a hike to the parking garage. He was so right!

I had the cardiac catherization on both sides and another procedure done which I won't go into. I was awake for the entire nearly two hour ordeal, but the staff was wonderful and comforting throughout. I was given lidocaine at the sites where the incisions were made and a mild drug to relax me. The doctor spoke with me immediately, confirming what we thought to be so. My mitral valve was damaged with the infection in 2009 and now meets criteria to replace it. It is causing the pulmonary artery to have high pressure and my body is making a lot of fluid to compensate. Most of the fluid removed was already being replaced. They gave me some great drugs to get about ten pounds of fluid or more off of me. I feel wonderful again (except for soreness and fatigue.) Now a team at that hospital has to examine my hospital records to see how to proceed. My lungs must be determined to be able to stand a surgery if necessary. There is no point in trying to make one thing better if in turn another organ will be injured. Whatever they advise me to do, I will do.
One very disconcerting thing that happened was on Sunday morning. My roommate (whose lung was filled with fluid) passed away. I was talking to her a few minutes earlier. They rushed me out of the room into a private room. I think I went into shock and the rest of the day I was just barely functioning. I was so happy to come home. I keep thinking of that dear woman though and feeling that perhaps I should have done something more to help her. I kept reassuring her that when I was full of fluid I was in the same distress. They tell me she might have had something more wrong with her.
Well, I am beat. I went to the local hospital for a blood test, made phone calls all day and made a run to Target after getting my oxygen delivery.
Time to relax now. All in all it was a great day to be alive today. Thank you God.

Update from Rob

2011-06-10T22:01:00.002-04:00

As you may know Nelle has been struggling with some health issues. On Tuesday she was admitted to the Hospital at the University of Pennsylvania.
She has asked me to let you all know that the procedure went well and she expects to be home. Sunday.
Thanks for all your good thoughts and prayers, they are much appreciated.

Rob

Lend a Helping Hand (if you can)

2011-06-08T11:10:00.002-04:00

There is a cancer blog that I found via way of Susan's blog. She had a link to help you this woman who needs to raise funds to go for cancer treatment. If you can help her that would be great! Jeanne can really use a donation to help her get the treatment she needs. Please check her blog out and think about whether or not you might be able to help.

Waiting for my call from Univ of Penn Hospital telling me to come. I am going to be admitted today with the procedure tomorrow, Thursday. Nervous but eager to have it done with and know exactly where I stand as far as repairs or future surgery. Please keep me in your good thoughts and prayers and I will post when I can, most likely not before Saturday. Stay cool in this heat wave!

Now For Something Completely Different

2011-06-07T06:58:00.002-04:00

It's been awhile since I made a blogging post that wasn't about my current health issues. I just read my friend Cynthia's entry and it got me thinking about forgiveness. When I was younger it angered me when people told me I needed to forgive others. Being raised with Christian values, this was a great source of conflict. I always felt this righteous indignation and for some reason that seemed to give me strength. Then I clung to the belief that forgiveness would only be granted if I received a request for it (even then I had difficulty granting it.) I began reading books and watching therapists on television who spoke about forgiveness. I began to realize that there were times I needed to ask forgiveness and never had. Oprah talked about how forgiveness was actually good for yourself. I began to see the other side of the coin. I began to think of things that had been done to me. One of the best examples was a childhood friend I used to have. I called her when I had cancer. She had a baby girl about a year younger than my son and I asked if she could watch my son some of the times I went for radiation treatment, maybe once a week. When I began to explain to her about the cancer she cut me off and abruptly said "I have to go. This is too depressing and I can't be your friend or help you." I heard her hang up. I sat there in shock and disbelief. I had known her at time for about twelve years. I carried this hurt for the next twenty something years. I was actually afraid to ask other friends for help for fear I would lose their friendship too. About twenty years later she called out of the blue acting like this had never happened. Over time, although it was never asked for, I forgave her. About five years after that she stopped speaking to me again one day, no explanation was ever given but I heard that she was upset with me because of a comment I made regarding her daughter's wedding we had attended. It was a buffet and our table was never called. Other tables were going up for seconds and I went over to the table and told them our table had been skipped. By that time there was nothing left but salad. It was very disappointing. Looking back, I have to laugh at this. I realize now that she has major problems that have nothing to do with me. I forgive her again, not for her (because she doesn't care) but for myself. We are all flawed individuals. Myself included. In life, it's just so ridiculous for someone to end a friendship over such petty things. REAL friendships endure those things. I think more than anything, I have realized that we use the word "friend" too often to describe an acquaintance. If someone hasn't been in your home in years (when they have been everywhere else they have wanted to be), is never avaialable when you need them, or never makes time to stay in touch they're just not really a good friend. In life we have so few really good friends. Ironically, so often the friends who are never there are the very ones who tell you over and over that they will be. I have learned not to count on people. In the end, I count on myself and if anyone else is there for me it's a bonus.

What we have here is a failure to communicate....

2011-06-02T15:41:00.002-04:00

Good night! I have waited home for three days to get everything squared away with Univ. of Penn. The doctor's secretary has been trying to set it up but she had no medical knowledge and was not able to answer ANY questions (although she was a lovely person.) My doctor didn't give the doctor ALL the information from the report and there is something that I think might deter him from proceeding. Yesterday I spoke with his nurse who assured me she would get the answers for me. Still waiting. I did take my cell phone and go out and have a pedicure and lunch (salad with avocado and a freshly made balsamic vinegar dressing that was yummy.) I felt pampered. It was a good day. So I still wait for the answers to a few questions but for right now it looks as though I will be admitted June 8th with the procedure on June 9th. The mere thought of this makes me feel faint. A girl's gotta do what she has to do and I have to do this. My back is so achey where the chest tube was. It's badly bruised. Give me a minute to get a little cheese for that whine. Baby Bel. :)

It was GORGEOUS today. Sunny with a breeze and high was just under 80. WE might have dinner on the patio. It needs a little cleaning first. I have to have meals on the patio in this weather, especially anything on the grill. The other night Rob made the most delicious peppers on the grill. Cutting carbs from my diet was not nearly as difficult as following a low sodium diet. It's in everything. The only way to avoid it is to make everything fresh or frozen vegetables. I love tomato sauce and that is loaded. Trying to find some with low sodium but so far no luck. There has to be a market for this. I love Hebrew National 99% fat free franks but they are way over the top. I don't know if I will ever enjoy a grilled dog again. Maybe an occassional bite. Eating out is even more problematic since they don't give sodium information on menus. When watching the cooking shows they are so liberal with the salt. I do use sea salt but still I am so restricted.

Have I mentioned lately what a wonderful spouse Rob is? Yes, like me, he is not perfect but he tries. He has been giving me my evening belly shots. They hurt and I hate them. It's easier for someone else to do it. Rob gets along great with my son. He doesn't try to parent him but gently explains at times why I do things. My son worries about me like a mother hen. He wants me to follow his rigid vegan diet (which doesn't include fish, eggs or dairy.) I try to explain we all have to do what is right for us and respect the choices others make for themselves. He wants me to drink coconut milk. If I'm having coconut milk I want a pina colada not cereal!

I'm here and I'm doing okay. This will pass and I will get through it. After all, I am bionic.

Home Again

2011-05-30T17:36:00.002-04:00

I am home once again. On Tuesday I must call the heart doctor at Univ. of Penn. to get a quick appointment. Then I must go there with my records (including DVDS showing the procedures I had done) and he will render his opinion. This is doctor is an expert in this field. I have a valve that was infected in the Fall of 2009 and it's damaged and now the pressure in it is high. The fluid was a result of that and the fluid pushed that up higher and higher until the three litres in total were removed. Now the pressure is lower but the problem must be fixed so that I don't end up in the same predicament again. I won't go into all the details here, there are other things as well to deal with.

They believe if they can find and treat the reason for the pulmonary hypertension it will stop. If not, I will have to deal with the same issues over and over again and I will never be free from oxygen.

I am currently breathing much better....I only need oxygen when I am excerting myself. Today I have been able to do some light cleaning, even bending over and been alright. To go to a neighbor's I did need the portable unit but was able to breathe well with it, unlike before where even with the oxygen I had real problems. I am in a much better place right now than I have been. All my hope is that the doctor I meet there will know what the best course is for this. I might need a cardiac catherization to determine whether or not a surgery is needed. He may decide not to do that since my mechanical valve but pose a problem in doing that. I will keep you posted. I have been here before, faced with what might be a large surgery that I really didn't want but knew I had to have. I got through it once and if necessary, I plan to get through it again. I'm a tough old broad. lol

Testing and Proceeding

2011-05-24T10:39:00.002-04:00

Today I am having a chest tube put in. They didn't do it yesterday after doctors decided on a lesser invasive tube. I found out a lot of information yesterday. I have pulmonary hypertension and other things. After yesterday's information I am changing cardiologists.

Back in the Hospital

2011-05-21T22:51:00.003-04:00

Friends,
On Thursday I went to see the lung doctor and when she saw the difficulty I had breathing and knowing from the xray I had another pneumonia, she sent me to the hospital to be admitted. I was actually relieved because my breathing had become so difficult I worried I would have a crisis while home alone. In the ER they ultrasounded my lungs and saw that all the fluid was back already. Since them, more has accumulated and today after seeing a chest xray they ordered a CT scan. I have some very excellent lung doctors brain storming. While they want to remove the fluid, the bigger question is why does this keep happening? There can be several causes and it's not black and white. There may be multiple causes. I am having breathing treatments every six hours and they have helped the lungs not feel so tight. I cannot be off oxygen for more than a few minutes without a problem. They believe this is a result of the fluid issue. I am really tired. I was in a room with a woman who was calling for help every half hour the first night and got little sleep. I am now in a room by myself, at least for now. Last night I had five hours of consecutive sleep. It was wonderful. Now I have to wait for the doctors to decide what the best way to proceed is. They are talking about many things and I don't want to discuss them until I know something is set to happen. Some of this is scary. I just have to trust in them (and of course I rely on my prayers and meditation.) They think they have a few options and want to do only what they have to.
Many of you are on my Facebook too and follow updates there as well. In the real world I have lost a few friends this year. It's okay though because I know that I have many friends out there who love me and understand what the last two years have been like for me. I am still grieving the lost of my father and dread the upcoming Father's Day. My mother is very disturbed over what is happening to me and cries frequently. I only tell her what she needs to know.
I will keep you posted. Thank you for following my blog and checking in on me.

Breathless in Jersey

2011-05-19T11:46:00.002-04:00

Since Monday I have been experiencing the worst shortness of breath yet. I called my lung doctor Tuesday and she had me go for a chest x ray (thinking that the fluid was already back.) I had to have someone drive me there as I couldn't make it into the building alone. They told me to go right home that my doctor would be calling me. When I arrived home the doctor called but told me although there was a small amount of fluid, there was a new pneumonia brewing. Thankfully we caught it early. She called in antibiotics for me and I am doing four nebulizer treatments each day as well. I had to crank up the oxygen a bit. If I sit perfectly still I am okay but the minute I move I can feel the difficulty I have breathing. I am so exasperated. I had an episode where I was going to go to the pharmacy alone and became overwhelmed with panic when I got in the car with the portable tank but couldn't catch my breath. Rob stayed home from work today to take me to the doctor's. I don't know what she will say or do. I just know that not being able to breathe has become a real source of anxiety. I hope to get some help/answers today. It finally stopped raining and perhaps if the humidity lowers that alone will make a difference.

Have Tank will Travel

2011-05-15T11:41:00.004-04:00

This constant drizzly weather with no sun is really getting to me. Today I am going out to a store and buy something. I have no idea what I will buy but I need some retail therapy. Really I do.

When Rob is with me it's just so much easier. Even though I have the handicapped parking pass often the walk from there into the store is a long one. Rob will drop me off at the door where I will find a cart and place the 7 lb. oxygen tank inside the seat meant for a child. My purse goes in there also. Then, with slight leaning on the cart I can shop. I really wish I knew of a creative way to dress the tank. It's in a black laptop type carrier. I am finally used to people staring at it and I heard someone murmur something about smoking to their shopping partner. Hmmm I wish they would have asked me what was wrong. Not everyone using oxygen was a four pack a day smoker.
My knee has pain from the NUSTEP machine and five minutes on the treadmill. Ibuprofen helps. I am thinking of ordering a custom bumper sticker that says "Girls with oxygen rock" or something like that. Suggestions will be given serious consideration. I have decided the best way to handle it is with humor. If you can't laugh at yourself you're in serious trouble.

Disappointment and Frustration

2011-05-13T22:15:00.005-04:00

The fluid didn't show any significant information. If the protein was high it meant one thing and low another but it was right in the middle. If anything, it leaned toward being the fluid which was inflammatory, which would have been caused by the pneumonia. I expressed my deep frustration to the doctor about not having a specific diagnosis or a plan on how to proceed. She did the tests again to measure and evaluate and discovered that my lung volume is less than it was a year ago. (This is what I have been telling her that I cannot take in the air I used to be able to.) Now that the tests showed exactly what I had been saying, I think the reality set in.
Where do we go from here? I am continuing with the lung therapy and hoping that it will help. The doctor is going to be investigating other options, including some sort of surgery to deal with the inflammation of the lung lining. This is something not to be taken lightly and she wants to see if there are less invasive options. The thought of a lung surgery scares me. These are lungs which easily get infected with pneumonia. It's a lot to deal with. I asked her if she thought I would ever be able to wean off the oxygen. She thought at some point I might be able to but admitted that this recovery has been the hardest for me. Last year's bout I was much sicker, in critical condition and seemed to make a better recovery. This time I was only in serious condition in January however it was a very large pneumonia in my right lung, which seems to have a more difficult time.

I am really frustrated. I hated having my suspicions confirmed about the volume loss. I feel as though I am mourning the loss of healthy lungs but telling myself that this is premature. Father's Day is coming and they are showing commercials and that really sinks my spirits also.
It's so hard not to know what's going to happen. There are some many questions that I have and a part of me is afraid to ask. It's clear to me that even the doctor doesn't have solid answers. Medicine is not an exact science. Sad but true.

Hopefully the BIG Day

2011-05-12T11:23:00.000-04:00

Today I am armed with printed out reports that I have found about the effects of radiation on the lungs. I meet my doctor at 2 and we will be discussing lots of information, including the chemical makeup of the fluid that was removed. Depending on the proteins in it, we should know where the fluid came from and that will give a lot of information. There is either a problem with the heart or lungs and that should point us in the right direction. I am nervous but anxious to know. I can deal with anything as long as I know WHAT it is I am dealing with. I saw my cardiologist Monday and he spent 45 minutes discussing things. He feels that the problem is with the lungs (as my heart is pumping like a champ.) Both my heart and lungs are small and I carry around extra weight. It would be easier on them if I didn't but I am told that it is not the cause of the problem and while it might help to lose more weight, it might not. Right now my help is coming from liquid oxygen. It is a major inconvenience, especially when I go out and have to carry a seven pound tank everywhere. It is helping me though. I use it connected to my CPAP machine which I sleep with also. So right now I am on oxygen 24/7. I use less when resting than when excerting and adjust the flow accordingly. It's another world with always being concerned about the plastic tubing, it slows me down. Last night I wanted some grilled asparagas and took it off while putting the veggies on the heat and later removing them. I am adjusting but hoping that I won't need this forever.
I want to feel that I am moving forward and slowly making progress to being more independent again. I am very independent and do not enjoy relying on others to help me grocery shop or do other things that I can't do on my own.
I will never again take something like breathing for granted.

Finally....Results

2011-05-06T04:12:00.002-04:00

I finally got the long awaited phone call of the pathology and cytology reports on the fluid that was removed. Although it didn't look "normal" it was fine. No cancer cells in it, no bacteria in it, so it was all good. The doctor wants to see me in a week for further discussion about what is going on.

Today was a difficult day. Although I go to lung rehab on Monday, Wednesday and Friday afternoons (with travel this is a three hour commitment), I had today to do other things. The day began with a visit to the hospital lab to check my coumadin. It was finally high enough to stop the injections of Lovenox, which are painful and have my stomach purple and blue. When I arrived there were no handicapped parking spaces and I had to walk much further than when I can get one. I was gasping for breath (yes I had a portable oxygen tank on) as I arrived at the desk. Kim one of the phlebotomists who I see regularly insisted that I not walk back to my car. She located a wheelchair and was kind enough to wheel me out to the car and made sure I was inside before she walked away. An act of kindness such as that is deeply appreciated. I then had to go to Pearle where I had to take my sunglasses back as they had an issue. It was hell getting into that place from there handicapped spot but the gentleman fixed the glasses and I was relieved that they were finally fixed correctly. From there I took myself to the grocery store. A pretty well located parking spot there. I grabbed a cart which gives me support and helps carry my purse and the oxygen, and picked up things I desperately needed such as milk and bread.
I realized as I stood in the checkout line that a woman was staring at me. While she looked away once in awhile she looked at me as though I had horns coming out of my head. I locked eyes with her at one point and smiled so that she would realize I was not a monster. She quickly looked away. At lung rehab other patients tell me they experience the same thing. I would never have stared at someone wearing an oxygen cannular. I can't help wondering if they think I was a four pack a day person. I want to tell them that I never smoked. Of course, I tried it but never had a smoking habit. I want to tell them that this is the price I seem to be paying for having enjoyed thirty cancer free years. Then I catch myself thinking that it's not really their business and I owe them no explanation. I am still hoping for a diagnosis (other than respiratory failure which the doctor wrote on a work note.) I don't know that she will ever know how much of one problem and how much of another weighs into the problems. I have scars from previous bouts of pneumonia but I have fibrosis from the radiation. I am still hoping that I will not have oxygen for the rest of my life. Right now I am totally dependent on it and cannot return to work without it.

On a completely different note, it's almost Mother's Day. I have a nice basket prepared for my mother. It has a puzzle (she loves having one to work on), a bracelet (Pandora style) with two charms, a book and a mug that says Mom with a matching tea towel. I believe my sister will be here from New York. She is coming an average of twice a month. Her daughter will be getting married in September at a fabulous place at the shore. It will be a beach ceremony followed by a reception. Thank God they are having this in New Jersey because trying to travel with all oxygen would be a nightmare. I would have to have a company send a tank to a hotel and it would be overwhelming at this time. I am trying to help my sister plan a shower here but I am limited in what I can do. They don't want me cooking while wearing oxygen and the minute I remove it, I have real problems. We'll see. Since this is my niece and my Godchild, I want to do something really special for her. She is so adorable, a petite natural blonde that looks wonderful in anything she wears. She also has a flare for fashion and I am so eager to see her gown. Something good to look forward to. I really needed that.

The Waiting Game

2011-05-03T09:56:00.003-04:00

This weekend I was in much better shape than I have been. On Saturday I was whipping about with my oxygen line, even going into the garage to search for things I needed. Sunday the pollen was heavy outside and my breathing was not as good. It was disappointing and Monday the breathing was as it was a few months ago. I am frustrated. I am still waiting for the doctor's reports to come back. Supposedly, they will contain information that will help them to know why I made the fluid, and hopefully how I can avoid having it again in the future (although pneumonia can cause it also.) I am trying to be patient, trying to distract myself and trying to accomplish things that I really need to.

I just read the most interesting and wonderful journal entry by Virginia. Click her name if you would like to read it. It made me feel peaceful. She is so knowledgeable about animals and all creatures. I needed that today.

Mission Complete

2011-04-30T13:31:00.002-04:00

Yesterday I survived my ordeal. I must say I seemed okay distracting myself by coverage of the royal wedding on television. I loved her gown, which reminded me so much of the elegant one worn by Grace Kelly. Her sister's gown was equally lovely but I wonder why she would have worn white to the wedding. It would have been just as lovely in a soft peach color. But I digress.....I arrived at the hospital early as I had to have my coumadin level checked (I had to stop it on Monday which put me at risk for a blood clot.) The level had been done the day before at my doctor's office and they accepted that test so I was actually a bit early. The set up of this hospital was different. The "short stay" unit of any having a procedure which required an ultrasound or other radiological device, was located in the radiology department. So I was admitted into that unit and immediately the nurse warned me that my lung would probably collapse, at least in part. HUH? My doctor had mentioned this was a possibility but the nurse made it sound quite likely. That's when I became nervous. Rob was not permitted into that unit until my procedure was done and I was returned to that room. One nurse was at lunch and the remaining nurse was simultaneously discharging two patients while admitting me. Shortly after she began, the other nurse came back from lunch and things calmed down. The other nurse took my medical history and I liked her better. She was calming. I waited an hour to be taken in while they were "saving" a patient's central line. They apologized for the wait but I told them to take their time, that was certainly more important than my procedure.

They finally took me into the room and began to ultrsound my lung area. The doctor said he was going to make a mark at the right spot and when I was expecting to feel a pen I suddenly felt a needle and jumped. (I was in a sitting position, bent over a table and holding a pillow.) He told me I needed to calm down. I then explained that as long as he told me what to expect we would be fine. He then gave me the shot to numb me which went really deep. He then inserted the drainage tube and it took about twenty minutes I think for it to all come out. It looked like beer (which I do not drink.) The doctor is sending the fluid for pathology and other tests. He removed about a litre from the area surrounding the right lung and I could feel a weird sensation as the pressure was removed the lung was able to open up. It actually hurt at first to breath using a lung which had not been used in months. I also coughed a lot. They then xrayed to make sure it had not collapsed and the xray was good. I was relieved. At this point I am back on my blood thinners and am using an injectible medicine as well to quickly thin the blood. Now I am waiting to see the results of what was in the fluid, and hopefully they will be able to tell what caused it to be produced. While it can be caused by pneumonia, I made much more after the pneumonia had cleared up. I will be on oxygen for awhile but I am hoping that it won't be permanent. My back and lung area are a bit sore but I'm sure that is to be expected. I'm just relieved that it's over.

Two Choices

2011-04-28T12:27:00.002-04:00

Just back from the pulmonologist where I was given two choices:
A. Have part of fluid removed tomorrow and then next week will have other part removed. (too much to remove at once)
B. Have part of fluid removed, be admitted to hospital with chest tube in lung so it can drain the rest of the fluid out. Minimum stay of three days.

I chose option A. The thought of having a chest tube hanging out of the lung did not sit well with me. Yikes. Talk about a source of infection. Apparently there is quite a bit of fluid (I saw the CT scan myself with the doctor showing me.) Most likely at least two litres. My right lung is squished so badly that it can only use 50% of the lung. NO wonder I was gasping for breath. I will need to be on the oxygen for a while yet. She is having a second machine delivered for me which will be hooked up to my CPap as she said I must have oxygen 24/7 right now. My chest actually hurts, from the pressure of the fluid. She promised I will feel so much better tomorrow after I get at least part of the fluid out. Trying to focus on the positive but still a bit nervous. Will keep you updated.

UPDATE

2011-04-26T10:15:00.002-04:00

Yesterday I was finally able to speak with my pulmonologist and she had the CT report. There is a lot of fluid surrounding my lungs. (Years ago this was called pleuresy.) It is now called pleural effusion. I have had it since January, with it enlarging and putting pressure on my lungs and preventing them from filling up with air. This Friday I will be admitted for a short stay and hopefully at 1:00 I will have the fluid removed and be much more capable of breathing. I am nervous about the procedure, having seen my grandmother have it done. The needle is very long. I am not a fan of any needles.

I just have to get through the week with not exerting myself and carefully using the oxygen. I pray that a week from now I am breathing and feeling oh so much better. Perhaps the end is in sight.

Changes

2011-04-25T11:50:00.002-04:00

Last week I began having some real problems with breathlessness to a new extent. I went for lung rehab on Wednesday and they sent me home. Not only was I having distress trying to breathe (even on oxygen) but they said my color was off and my lung breath sounds were not good. I came home and called my doctor, who was on vacation. Spoke to covering doctor who called the respiratory therapist at the rehab and decided I needed home oxygen (something she had been saying for over a week.) Late Thursday night I took delivery of a huge (R2D2 type) tank with liquid oxygen and a portable unit which can be filled from the larger unit. I had such mixed feelings but I was in no position to refuse it. I still use my other machine for sleeping. On Thursday morning I went for my CT scan. It was originally scheduled for Tuesday but the machine broke. I had the same problem as last time, I simply cannot lay flat on my back and breathe normally. I am gasping for air yet trying to hold my breath for three intervals of a minute each. Talk about torture. The CT scan showed some more problems which I won't go into except to say that the pleural effusion is now larger. This may be causing all the lung distress but you cannot know for sure as other things were observed as well.

At this point, I was given some information about post radiation lung disorders. After doing extensive research it certainly seems a possiblity this is what has been happening to my lungs. I am eager to discuss this with my lung doctor and she is supposed to call me this afternoon and meet with me on Thursday morning. I don't want to speculate at this point and I am not qualified to do so but I am certainly concerned. I was to return to work May 1. I don't see how that would be possible, but that decision is the doctor's not mine. I do know that I would need a lot of arrangements made in order to do that. I work a stressful job where there is no time for breaks other than the scheduled half hour lunch and two fifteen minute breaks.

I haven't been online too much. My son continues to have intestinal issues and I am greatly concerned about him. He was hospitalized eight weeks ago for several days and has been to the ER twice since then. He did come over yesterday and we managed to have an Easter dinner with my husband doing most of the work. My mother and sister also joined us. It didn't feel like a holiday of any kind. Even with the oxygen when I try to do physical things I have problems. I am tethered to lines and have to get to the main tank to change the setting if I am moving about or sitting. I certainly hope that this is going to be for a short time.

Sunny Sunday

2011-04-17T17:40:00.002-04:00

Yesterday the weather was damp and cold then we had torrential rain, lightning and thunder. It woke me throughout the night. I have not been feeling well the past few days. I think that a lot of people come to lung rehab when they are still sick. I have become very attentive to using disinfecting wipes on nearly everything I touch there. One woman is particularly dirty. Her clothes desperately need washing, her personal hygiene is terrible and the people who work there are distressed about it. They are helping her but have gently made comments which are ignored. I have never had to be in such close proximity to someone like this before. I am always the one who feels sorry for people. This woman owns her own home and can do laundry. I have to keep a certain distance from her because I start to feel sick from the odor. She worked until last year and I cannot believe that she went to work like this. She is not as breathless as many of us. She moves around easily and can be on the treadmill with no real problem. Last night I began to ache all over. It was so damp that my sternum was aching. Not surprising since it has so much wire in it, but it's not a problem I have had like this before. I couldn't find a position to sleep in that was not painful. Hopefully tonight will be better. If not I will take something for the pain. I miss my father terribly. Easter is coming. He loved holidays and celebrations. I have invited my mother and sister to come here for dinner. I think having dinner there would be harder. I can't believe he has been gone for two months now. My mother is doing okay. Better than I had expected,but still has some really bad days. She has people wanting to visit her, or inviting her but says she only wants to spend time with her family right now. I think she just wants to be with other people feeling the loss. So we are spending more time together than usual and that's been good. IF my CT scan is good on Tuesday, I will probably be going back to work May 1st. We'll see. I won't get the results until ten days later at my doctor's appointment.

Brought to you by the letter U

2011-04-14T07:34:00.002-04:00

I really like having a laptop. It's just so much more convenient to be able to use it wherever I choose. With two pets (especially a cat) I find that it gets very dusty and for several days I lost my letter U. Since that letter is in my last name and used frequently it was really a pain to have to hit it several times or go back and add it because it was missing later. I am not supposed to use any cleaners of any kind, particularly inhalants. I had to wait until Rob had time to do this for me. It took about three days. I mean the guy does work full time and then has to do a lot of things around the house I can no longer do. It's frustrating for me to have to wait and ask people for help. I would so much rather be doing things myself. I remember seeing people with oxygen tanks and never thinking of what their lives were like. It's just so inconvenient and frustrating to find myself walking ten feet and feeling a tightness in my chest and realizing I am already out of breath.

We went to Applebees last night. I had hoped to go to Kohl's afterwards but I had rehab yesterday and I was so tired that we had to come home. I did have a great dinner salad. It looks like the sun is finally back. If the temperatures warm up I think my lungs will be better. The dampness and cold have been a real problem.

Is anyone besides me watching American Idol? My neighbor Stacey does and we discuss it the following day. She is always offering to drive me places and help me. I don't take her up on it but just her offering means so much. I am truly blessed with good neighbors here. Time for breakfast. Wishing you a bright and sunshiney day.

Pressing Onward

2011-04-12T09:15:00.002-04:00

I think one of the hardest things to do in life is to being working hard, not seeing much in the way of results but still pushing onward towards the goal. In rehab I am not seeing results. They have tried repeatedly to put me on a treadmill and when they do I lose my breath quickly. Mind you, I am wearing oxygen when this is happening. I can't go more than three minutes without struggling and watching my oxygen plummet. I can't tell you how frustrating this feels. All the breathing excercises and other things seem to have no effect on this. Even the pulmonary therapist tells me she is perplexed. She is suggesting I get a second opinion from someone who is prominent in the field. I am having another CT scan next Tuesday and if that doesn't show something then I will try to set that up. She also feels that I need oxygen for home and probably have needed it for months. The doctor asked me but I said no, thinking that I would be okay without it. I also declined her suggestions that I get a scooter for when I need to do any walking. I guess a lot of it is my age, but I cannot accept, at least now, that this will not get better. I just keep thinking they will find the problem and fix it. The eternal optomist. Now for something completely different................ Does anyone else have problems with people calling during their routine dinner time? Mind you, when I am working I am rarely home before 6:30 and people know I am just coming in the door then and rarely call. Now that I have been home a few months, I am finding anywhere from three to ten people call at that time which is 5-6 p.m. I have answered the phone and told them that I am either preparing or eating dinner and will have to call them back. The same people will call again during that time. The obvious solution is not to answer the phone during that hour. When my Dad was sick I was always afraid not to answer the phone because something cold have happened. Now my mother is alone and I worry about her. Also, my son has been sick twice recently. He was back in the emergency room all Saturday night. He got a stomach virus and dehydrated. When he gets sick, his anxiety is bad and he fears that he might be relapsing. I offer for him to come stay here but he knows that my immune system is weak and refuses to subject me to his germs. We do a lot of talking on the phone during that time. Today I am trying to put through a real estate referral. I have to take my sunglasses back to have another prescription put in them. I need to get to the grocery store for a few items. Lots of small things. It is supposed to be raining hard later so I want to get them done early.

Weather Chaos

2011-04-06T10:25:00.003-04:00

Yesterday I had to pick up my car which I had detailed. (I have a family member who does that and get a good deal.) My mother came to pick me up and the weather bug told me it was 62 degrees and it was clear outside. Deciding to welcome spring, I threw on a long sleeved T shirt, jeans and wore flip flops since we were going for a mani/pedi before picking up the car. We found a place that does both on Mon., Tues., or Wed. for $30. In this area that is cheap. By the time we arrive at the nail salon it has cooled off significantly and now is a bit windy. While we are in there heavy rain comes in and before we know it the temperature had dropped 20 degrees! We popped into Dunkin Donuts next door for some warm coffee while waiting for the rain to let up a bit. We got to the garage and noone was there. We went to my mother's and I left a cell phone message to please contact me when they returned from lunch. By the time I got out of the car to pick up mine I had to crank the heat up. My feet were freezing and so were my arms. I made it home but the chill had really taken me over and all night I felt cold. My car looks really good. It's a few years old now and I try to keep a good coat of wax on it. There had also been some mold on a door jam and they removed that. Rob and I went out to get a nephew a birthday gift and pick up a few grocery items. From running in and out of places and having been put through a work out the day before, I am really achey. Hoping I can make it through my entire regimen today. Of course, the breathing is the most important part but they want all my muscles worked out. I think I will take Advil half an hour before I get worked out. I think muscles that haven't been used in two years are being excercised. It's a good thing but no pain no gain I guess. Maybe I can lose a few inches in the process.

Time or the Lack Thereof

2011-04-04T08:53:00.002-04:00

On mornings such as today there just doesn't seem to be enough time to do all I want. I go to the rehab facility three times a week. While it is about twenty-five miles away most ways I went in the past, I was able to find a zig zag shortcut. I am now getting there in about 35 minutes by shaving off some miles. In order to take the shortcut I have to drive on a highway that is filled with trucks. They cut you off and I am not used to that. I have to be very attentive to the vehicles around me. Still, it is worth the time saved. I leave here about twelve thirty and don't return until about four. At that time I am frantically searching for something for dinner. At five Rob arrives home looking for conversation and something good to eat. You would think that I had plenty of time to get organized before leaving at twelve thirty but what happens is I make coffee, read emails, get a few phone calls, make the bed, and decide what to wear for the day. Since most of my clothes I wear when not working are jeans it's been a problem for me to find clothes I can excercise in. I did find a few things and I only have one pair of shoes that can be used. It's still winter or I would have many other things I could wear. Well, it's Spring pretending to still be winter I think. Today I will stop by my mother's and pick up some peppers and make stuffed peppers for dinner which I will then share with her. She doesn't want to cook but she enjoys a nice dinner so I am trying to see that she has that. My aunt feels I should force her to come here for dinner as opposed to delivering it. I just can't make demands on her at this time. When I see her instead of the mother who frustrated me so much of my life, I see a frail woman struggling to make it alone. I worry now that at 79 I won't have her much longer. If you would have told me in my twenties I would ever feel this way I wouldn't have believed it. When you lose a parent you have spent so much time with it changes many things. I enjoy talking to my siblings now because they understand. Their experience is different than mine but we share a loss. A few friends shared memories of my father with me and that helped to. We all have different experiences losing a parent, just as we all have different relationships with our parents. Still, I find that people who have not lost a parent can be so insensitive. Today is the funeral for the young mother. The funeral is at 11:30 and my Mom was not up to going. I was already scheduled for my rehab and if I don't go I would have to pay for the session out of pocket. I know there will be a lot of people as she was an elementary school teacher. My thoughts are there with her and her family. I cannot imagine her young husband, married two years and left with a week old newborn son. I know her family doesn't live far from them and I'm sure they are only too happy to help. They are a close and loving family. Well, time to answer emails and get start getting ready. I have to keep myself busy right now. Have a good week.

Rehab

2011-04-02T11:34:00.002-04:00

I have had three visits to the pulmonary rehab facility. It has been an eye opener in many ways. On the first day they realized that I cannot do any exercise (even walking longer than 4 minutes) without oxygen. If I don't have oxygen, my oxygen level drops below 90 which is not good. It explains a lot of why I have struggled, especially the last year. They call what happens to me "DEsat" meaning your oxygen level has desaturated. I am now working on a machine, doing muscle strengthening exercises and breathing exercises but all while wearing oxygen. Depending on how much my lungs improve, they are thinking I may need to have home oxygen for times when I must ex cert myself. Although I had told my lung doctor about this, it is now documented by machines that measure the activities. I am slowly getting in better shape I think. My muscles had not been used because of the breathlessness. I am hoping to push myself enough to get better use of the lungs. They monitor me and stop me when it's necessary. When you lose your oxygen it makes your heart work a lot harder and your blood pressure rises. This is when I have to stop. My mother had been doing pretty good until yesterday. Yesterday she had to go for a mammogram (if you remember her mother died a year and a half ago from breast cancer.) She was so anxiety ridden then on the way home she passed the cemetery where Dad is, it was raining and dismal and she lost it. She became physically sick. We tried to take her out to dinner but she refused. We brought her home a dinner (crab cakes, potatoes, veggies etc.) but she took a few bites and said she didn't feel well. I offered to spend the night but she refused saying she didn't want me to get sick. She was really upset and I felt horrible leaving her there alone but she insisted. A twenty-nine year old young lady from her church gave birth to her first child a week ago. On Thursday they found the new mother was very ill and rushed her into intensive care after they diagnosed an infection. The mother passed away less than twenty-four hours later. My mother has been friends with her mother for many years and just saw them at my father's funeral. It is such a tragedy. This week old baby boy lost his mother and will never even have memories of her. It has hit us all hard. The funeral will probably be next week, we are still waiting for details and not wanting to bother the family with a phone call. My mother called and asked me if I would go out with her to lunch. I guess she is ready for a change of scenery, perhaps briefly. I am excited that she is willing to leave her house. She hasn't done that much. Life goes on when you lose someone you love...it truly does....but it's never the same.

New Dishwasher

2011-03-28T11:44:00.003-04:00

This morning I had a new dishwasher installed. It must sound sad how excited I am over it. My old dishwasher was in the house when we bought it. It only had an on/off switch, it was very noisy and had no boost for water temperatures that were not hot enough. My doctors had asked me if used a dishwasher than sanitized and suggested I get one that did. I try to make use of working things and am reluctant to replace an appliance that still works but when the water was not entering for the rinse I knew it was time. At the time we began to search I found a strong recommendation from Consumer Reports and it was 20% off and then I had a coupon for another 10%. It had all the things I wanted and was highly rated so this last week we ordered it. Now I have to get used to loading and unloading a very different set of racks but I am overjoyed to know that my dishes will be sanitized. Tomorrow I start my lung rehabilitation. I am nervous but excited at an opportunity to improve my breathing. I suspect the pleurasy is still an issue but I won't get another CT scan for a few weeks and that's when they'll know for certain. I found out my insurance covers me for 20 visits only. I am also on my husband's insurance and if I need more visits after that I can use his. Even with insurance it will be costly for us but it is necessary. I am happy for the opportunity after two years of struggling. Yesterday Rob and I had the most delightful brunch. We saw a very small place and stopped when we saw the brunch sign. It was wonderful. They allow you to bring your own wine (no we didn't have wine with us.) I had an individual quiche and salad with their own calamatta olive/artichoke dressing and it was delish. Rob had some scrambled eggs with steak and swiss cheese in them, sourdough toast and some roasted potatoes that he loved. It was reasonable too. Afterwards we stopped at my mother's where my sister was staying for the weekend. The weekend went by fast, they always do. I don't like it when Rob goes to work Mondays. Although I enjoy some occasional solitude, it's different when you aren't feeling well. It's comforting to have someone here. I'll let you know how the lung rehabilitation goes....wish me luck.

Looks Like I am Rehab Bound....no not that kind....

2011-03-21T18:18:00.002-04:00

Last Thursday, in addition to my fabulous St. Paddy's Day meal and minor celebration, I paid a visit to my lung doctor. She could hear wheezing in my lung yet and my pulse ox was lower than usual. She decided two things: one, that I was not ready to return to work and picked May 1 as the new day to shoot for and also that I would benefit from Pulmonary Rehab. That is done as an outpatient about three times a week. The difficult will be the traveling to and fro. The drive is an hour each way for me. I will be put on various machines for about an hour and a half each day. A part of me is not looking forward to this but then the other part of me understands that I should not have to continue on with these chronic breathing problems if there is anything that might help me. I am waiting for my insurance company to approve it. (While fighting with them to pay the last bill from the radiology facility I use.) So, I am guardedly hopeful that this may help me and there will be a day in the future where I can shop somewhere there is not a cart for me to push to make it easier to breathe. I am just too young to be doing that and even the "seniors" are making comments to me.
Last Friday my son got sick again. He gets very stressed out over things like the hospital bill he owes for his last stay in February. What a sin that if you have been prudent enough to save that money will keep you from receiving any assistance while had you not done that you would probably owe nothing, but who could take that chance? He is trying to be responsible and pay his own way but finding it frustrating that with all the charity handed out to people who are not citizens (or may have never paid taxes) that he will have to pay for a long time. This country should be taking care of it's own's medical issues before helping others. OK, that's MY opinion but his father and I have worked hard and paid taxes for years (as has he much of the time.)
Yesterday I woke up feeling under the weather myself and realized I have some sort of bug. I've had a headache, aches and pains and some intestinal issues.
Better today and hoping to be A OK tomorrow. That's about all for now.

Irish Soda Bread

2011-03-16T15:28:00.002-04:00

Terry asked that I post the receipe for Irish soda bread. I have tried many different recipes and this one came from an actual Irish paper or magazine. It is my favorite and the only one I make now. Mind you, you need buttermilk for it. Also, there is baking powder AND baking soda. The powder gets added to the flour mix but the baking soda gets mixed with the liquids.

4 cups sifted flour (all purpose)
1/4 c sugar
1 tsp salt
1 tsp bakign powder
2 Tbsps caraway seeds
1/4 c butter or margarine
2 C raisins
1 1/3 c buttermilk
1 egg
1 tsp. baking soda
1 egg yolk, beaten

Sift flour, sugar, salt and baking powder into mixing bowl; stire in caraway seeds. Cut in butter until mixture looks like coarse meal; stir in raisins.
Combine buttermilk, 1 egg and baking soda; stir into flour mixture just enough to moisten dry ingredients.
Turn onto floured board and knead lightly until dough is smooth. Shape into a ball and place in a greased 2 quart casserole. With a sharp knife, cut a cross about 4 inches across and 1/2 inches deep in center of dough. Brush with egg yolk.
Bake in a moderate 375 degree oven about one hour or until an inserted cake tester or wooden pick comes out clean.
Cool bread in casserole 10 mins. then remove. Cool on wire rack before cutting. To serve, cut down through loaf to divide it into quarters; thinly slice each quarter. Makes 1 loaf.

I should have taken a picture of mine before cutting it but my mother had just come in, it was warm and I quickly cut it so she could have some. I have several family members who cannot have the caraway seeds so for theirs I leave them out. I make sure the raisins are fresh, if not I soak them for a bit first.

And if any of you are interested in a gluten free recipe found this one:
http://www.mnn.com/food/recipes/blogs/recipe-gluten-free-irish-soda-bread

Cough Chat

2011-03-15T12:07:00.002-04:00

Yesterday was a really cold day. It is very rare that I stay in my pajamas all day but I did yesterday. It was depressing and as the day moved along I began to cough again. Last night I woke up coughing and wheezing. That pesky left lung has a middle lobe that loves to wheeze. Last CT scan showed what the doctor believes to be a "mucus plug" in it. I am now coughing a lot and starting to feel nervous. My shortness of breath is worse too. I am either getting a really bad cold (which can lead to pneumonia) or some other respiratory ailment. I have an appointment with the lung doctor on Thursday. I also need another CT scan to see if the pleural effusion has cleared up or at least significantly improved. I have had this several times before and by the time I finished the antibiotics it had cleared. This seems to be more stubborn.

I dropped off my papers for the accountant to do my taxes. With the disability payments and medical deductions I wouldn't even consider trying to do it. The last time I tried I made a mistake and he had to straighten it out for me. I stopped by the grocery store and got a corned beef brisket and cabbage to make for Thursday. I will also bake the Irish soda bread which Rob and I love. We have this traditional meal each year and when I am home to make it, so much the better. I have my doctor's appointment at 9 a.m. so I will be home in plenty of time to make everything.

I went by the cemetery this morning. A few rows over there had been another funeral. My mother is not ready to order the stone although she knows what she wants. She is giving Rob and I the graves next to theirs. We already have a stone there facing the other way so we will have to have "our side" carved with what we want. I want a ribbon like banner and Rob wants Celtic style lettering.
Yes, I know it's premature to be thinking of this but I do want to know it will have what I want. There has been much discussion in my family over who the favorite child is and I told Rob under my name to put "favorite child". That would be hysterical. Of course, he wouldn't really do it. I will have to settle for something else such the nickname my grandmother and uncles called me "princess". Ironically, it wasn't meant to be a compliment but more of a joke, because I was like the princess in the story "The Princess and the Pea". If I got sand on my feet they needed to be rinsed immediately. Since several years of my life were spent on the shore of the Chesapeake Bay you can imagine what a nuisance that was. My grandmother gave me sneakers to wear on my feet both in and out of the water to keep the sand off of my feet. The woman could outsmart any child and we loved her for it. I don't know if I mentioned but my cousin's daughters put together a cook book they had made with pictures and recipes of my grandmother's. What a wonderful Christmas present that was! My grandmother always had blue willow dishes and the book is white with blue art. It's amazing. Everyone I show it to is so impressed at the job that Christie and Jenny did. My aunt had one made for my mother, sister and I in hardcover and some smaller softcover ones made for my brother's wives. I am thinking of making one about my Dad for my mother and siblings for Christmas. We have so many pictures of him. I would need to type up some stories. I have plenty.
Well, time to grab some lunch and run something over to my Mom's. I try to see her for a time each day. There is so much still to do but yesterday Dad's clothes were given away (except of course for his shoes.)

Monday Musings

2011-03-14T11:05:00.002-04:00

I had a really nice weekend (except for the sleepless night on Saturday.) My sister came early Saturday morning. She had a few hours with my mother (I always try to allow them sometime without me there) then they called me asking me to go out with them. We went to the Dollar Store and got our bargains. I got a lot of cards there. Afterwards we retried what had once been our favorite diner. In the New York area diners are a bit different than elsewhere. You can get some fabulous dinners. In New York state some diners even serve liquor. This diner had changed hands a few times and the last time I was there it left a lot to be desired. They had remodeled and we had a very nice dinner. I had crab cakes which were all crab, almost no filler and my sister had the sole stuffed with crab meat. Our portions were large and there was no room for the included dessert so we got rice pudding to go. We went back to my mother's and worked with her on a jigsaw puzzle. She always enjoyed them and now has several new ones. For the most part she is doing well, although she has some bad moments. I was spending every waking moment there but slowly am trying to get her used to having some time on her own as I am slated to return to work April 1st. That will be hard for her. We have done a lot and today she was dropping off the last of Dad's clothes to be donated to a bowery mission in New York. Seeing the clothes in the bags was really hard for me. I know they will be put to good use. He had visited the mission with his minister once or twice. Every now and then I almost pinch myself and ask "Can he really be gone?" It puzzles me how I can do that after attending his funeral and visiting his grave half a dozen times already. I guess it's all part of the grieving process. When I was out of work five years ago my Dad would just show up at my door. It was usually around lunch time and he would ask "What's for lunch?" At times I was busy doing other things and I would kind of sigh. Now I would give anything to have him throw open my front door and have lunch with me again. The last two years there was a rare time you could have a give and take converstation. He had aphasia then just gave up talking except for simple words like yes and no. If he got irritated he would let you know with shocking entire phrases or sentences like "Leave me alone" or "Go away". If you were lucky you got a smile from time to time and that made my day. We lost him slowly over time and then at the end, it was like we lost him twice.

My sister brought Office 2007 for students with her. I have been wanting it for a long time. Now I finally have a word program in the laptop. I also was able to convert my old word files. I have an excel spreadsheet with names and addresses that I used for Christmas cards. I have to try to figure out how to do that in this version. It gives me something to do. I had also done two journals (favorite poetry and favorite receipes) that are in a Corel program. Can't seem to get them open now. I would like to have them put into word.

It's chilly today. Overcast but no rain predicted. I am going to stay home today. Just take some time and watch an old movie. No doubt my neighbor Stacey will come over at some point. She has been wonderful with her caring and support.
They wanted to take us to a concert but we declined. I don't want to leave my mother for hours yet. It's a lot what she has and continues to go through. It has changed her and made her more emotional in a positive way. Life goes on but I think these experiences change us all. Now when I know someone has lost a parent I will reach out to them and let them know that I understand.

Life Goes On

2011-03-11T13:10:00.002-05:00

I have spent so much time thinking about friendship and making many observations. I have found that the friends who tell that they love you, promise to be there for you always etc. are the ones who let you down. My other friends who never made promises were the ones who were here for me. In fact, one cried when hearing a phone message from someone who always said they were my best friend. I have discovered that these people when presented with the truth try to turn it around and blame me. I tried to hang on to friends I had a history with but the truth is time passes and people change. I don't make promises to friends but when they need me I do my best to be there. Is expecting to be treated the way you treat others too much to ask? I don't think so.

My Mom has had a few really bad days. I have had to go there and give her sick dog medicine that she can't get her to take. I wrote some thank you cards today for her and made lists for her. Every single thing is a reminder of a person who is no longer there. She has also had two close friends who have not called or visited and I know that is bothering her as they were both widowed in the past few years. They came to her house all the time then and she was there for them.
I remember one friend who just came sat and cried.

My one friend talked to me yesterday and told me that she cannot allow people to get too close to her anymore. She was hurt too badly and just couldn't put herself out there again. A part of me feels that way. The other part knows that there are genuine people out there, some who have touched me in a way I won't forget. I do know this has taught me that I will never underestimate the power of a sympathy card. Each one I received was cherished. It's not a hard thing to do but it means so much to someone when they are grieving.

Lent started this week. For lent I am giving up friends who profess to love me but whose actions say something entire differently. No relationship is 100% bad and of course I got some good from them but I need much healthier relationships.

The Good and the Bad

2011-03-09T08:59:00.002-05:00

My cousin and her Mom were here for two glorious days. It was wonderful to have their company. They spoiled us by taking us out for every meal. The whole time we have had company this was the first time there was no food prep or dirty dishes, save the lunch I made them when they arrived. Because they have been through this, they understood and shared a lot. Sometimes just being understood is worth it's weight in gold. I stayed at my mother's, with my cousin, so I had two days without animals to worry about. When I arrived home I was shocked to hear a phone message that had been left. A friend was angry that I had not called her back in the past two weeks. (I had called her the day my Dad died and that was exactly two weeks earlier.) Truth be told, I had attempted to call her and if she had checked her caller id she would have seen that. I did not leave messages. She only has a cell phone, no house phone and reaching her is not always easy. She went on to say not to bother sending her cards (I had sent her a St. Patrick's Day card) as we "never talk." I cannot tell you how upsetting this was. Firstly, my father had died two weeks to the day yesterday. In that short time I have spent countless hours calling social, security, their utilities, etc. to have things changed into her name. Some require copies of the death certificate. People are constantly dropping by my mother's house, bringing productivity to a standstill. My mother is not fully functioning right now. I prepped her house for company, changed bed linens and fielded what phone calls I could. Should I have to explain this to someone? I think not. While all this has gone on, I have also continued to deal with my health issues and see doctors and make sure meds are filled and taken. Anything I do at my mother's is with me struggling for breath. My mother's house has been a constant delivery point. My brothers friends have sent floral, and fruit arrangements and the food deliveries still continue. I am astonished at how much support their friends and their families have given and how generous they have been. Some of my brother's friends have actually called me to see how I was doing. My neighbor, Stacey, was at the funeral and has called and or visited me each day since then. If I am not around, she leaves a message just to let me know I am in her thoughts. Yesterday when she called I was crying about the phone message and she cried with me. The friends you think will be there for you sometimes cannot be. Maybe they choose not to be. I have learned once again that I can only truly count on myself. I'm a strong person who has survived cancer several times, heart surgery and five bouts of pneumonia in twenty months. I will survive this too. It would just be easier with some genuine caring and support.

New Post

2011-03-06T05:55:00.002-05:00

Friends:
I wrote a lengthy post in my confidential journal (private version) which I meant to put in here. I cannot cut and paste it or move it over. IF you do not have the link or wish to have your email address added so that you can access it, let me know. I think most of you are on that list anyway.
Sorry for the inconvenience.

My Father's Passing

2011-02-28T09:18:00.003-05:00

On Feb. 22nd my father entered eternal rest. It was a gentle passing and my hopes and prayers were answered as it was in his sleep and as my mother slept nearby and never heard anything we know it was not traumatic. She awoke at 4 a.m. and he was already gone. She called the hospice nurse to come and then my brother and I went there and and saw him before the funeral home came.

Later we went and made the arrangements and on Thursday, Feb. 24th it was just one service: an hour viewing followed by a funeral service. He looked so wonderful. His coloring was perfect and he was buried with a gold and diamond tietack I had bought him. It was his and I insisted. We left the funeral in a short procession to the cemetery. The state police escorted us (my nephew is a state trooper and his friends volunteered their off duty time.) When we arrived there were two Navy officers. I am posted a picture or of that. They played Taps and presented Mom with his casket flag. Rob took out his phone and snapped a few pictures which turned out beautifully (at Mom's request.)

My mother is doing better than any of us expected. I have been spending most of my time at her house helping. Her sister and niece stayed there all last week and then my sister came from upstate NY and later my brother and his wife. It was chaotic with us five kids and spouses but it all worked out. We were the recipients of constant food and floral deliveries and there was an abundance like I have never seen. Mom had a catered luncheon back at the church after the cemetery and we had those leftovers too! At least a dozen people bought food and some paid a restaurant to deliver cooked food.

I must say this: I am so saddened by the lack of acknowledgement of my coworkers that I have worked with for 3 1/2 years. I cannot focus on that but it has made me realize at a time such as this how just a simple email saying I care or a card means so very much.

I have letters to write and much to do but I wanted to post this and let you all know. I will be out of work until April 1st now. I still have plural effusion (fluid surrounding my lungs) and it causes me difficulty in breathing. I have been running a low grade temp as well. Hoping that will clear up.

OH! The day of my Dad's funeral my son who had been ill for several days went to the ER and collapsed. They admitted him and he was inpatient for three days. He had a bad stomach virus and had to be in isolation. He came home Saturday. He has his own apartment, he doesn't live with me and I couldn't be around him. Rob did go take him magazines and visit with him.

My phone is starting to ring a lot....I have lots to do. Life goes on and I am taking it one day at a time.

UPDATE on previous post

2011-02-19T09:25:00.002-05:00

Have been taking my medicine at the much higher dose and with another medicine added to it and I am breathing oh so much better :)
IT is absolutely wonderful to be able to walk to another room without stopping to catch my breath on the way. I cannot put into words the relief I feel.

Weather reversed itself from 70 to about 30 and very windy but still sunny.

I am going to be making a cake (from scratch) that my sister-in-law, Leslie, made. It was scrumptious. It was called harvest cake but she and now I refer to it as apple cake. It has fresh apples and nuts and a light carmel glaze. My kind of cake. I get to use my new mixer. Leslie got a red one for Valentine's Day and named her Ruby. She called last night and asked me what I had named mine. Ummm nothing. She said well then she will be Olive. Yes she is green although more of an apple than an olive but she was so enthusiastic about naming her that I will keep Olive l0l.

I am joyous for the first time in weeks. I can breathe. Something most of us take for granted everyday but when you can't do it, trust me, it's major. Have a wonderful weekend. Spring is around the corner.

So much going on............

2011-02-18T10:07:00.002-05:00

Yesterday was a crazy day. It started with me getting a CT scan of my chest to see how the pneumonia was clearing up. When they went to lay me down I was gasping for breath and the technician got upset. I assured here this has been happening for a week and she proceeded after agreeing that I could not elevate my legs on the wedge. When it was done a doctor came in the room looking very serious and began to ask a lot of questions about my heart surgery. I could tell something was wrong but I wasn't really eager to hear about it so I got my DVD copy for the doctor and left. I then went to the eyeglass place to have my new lenses cut for my existing frames. I have to tell you that I have terrible vision and now need progressives. I went to THREE places to price just the lenses and each place sold the same manufacturer and the price was consistently $550.00 just for the lenses! I had to have them. While they were putting the new lenses in I drove and got myself a diet soda. The weather was beautiful and I tried to soak it in. I returned, picked up the glasses and headed home. There was no phone message from the doctor so I was thinking maybe I misread the doctor (which I rarely do.) The mailman delivered my new laptop battery which I had waited weeks for. We had some leftovers for dinner and then I heard the cell phone ring but couldn't get to it before the house phone began ringing and my lung doctor was calling. It seems I have fluid and plenty of it: in and around my lungs. She said I had to up my lasix, doubling it and take potassium with it. I also needed to call the cardiologist and make him aware of this.

I had to run to the hospital this morning for a blood test. Did that and made it home before 9 a.m. when all the phone calls began. I need dr. a to fax this to dr. b etc. They all need copies of things that each has done. I need to see all of them next week.

I don't know where I am....what is the real problem: heart or lungs or perhaps both to some degree. It's scary but I've been dealing with it for nearly two years now. I want answers but they seem so slow in coming. These are not the first doctors who have tried to solve this. Half a dozen of each specialty have seen me. I am following their orders and taking it easy. I really have no choice.

I am trying to keep my mind in a peaceful place and assuring myself that this will get resolved and life will go on. I just want to be able to walk without struggling for breath. Patience grasshopper.

Happy Valentines Day

2011-02-14T14:57:00.002-05:00

This is my Valentine. He has not had it easy of late because I have been rather cranky. He has taken over much of my duties here and at times it makes me feel guilty and frustrated. I am very particular about how things (such as laundry) get done. It's very frustrating to me when I see my new black T shirt covered with white lint or some of my clothes have been shrunk. At times I just cry and I know it sounds silly but I don't want anyone doing anything for me. I want to do it all myself. I always took pride in being so independent. Now at night when I have some episodes where I am struggling for breath I feel I am not the same person. Ronni commented that "This too shall pass." I know this is true. It's just finding the patience until it does that I need.

This morning I went for an overdue mammogram and bone density scan. I already know that the area above my navel has thin bones due to radiation. The others seem okay as far as I know. When I was giving my medical history to the technician she looked shocked. When I had to lay down flat for the test it made breathing so difficult she wondered if I could do the test but I did. It didn't take that long and I wanted it done. The walk through the maze of the radiology facility left me tired and breathless but I did it. It was a sunny 55 too which made it so much nicer. I know that I am making slow progress. The breathlessness is something that will never totally be gone as it is due to more than one factor. I have to do the best I can. I have lost weight since my wedding nearly nine years ago. I hope to still lose more if that will help.

One day at at time. That's how I have to do it for now. I have much to be grateful for and I have not lost sight of that. I have survived cancer for thirty years. I deal with the problems now of radiation that they no longer give so much of. Would I do it again knowing all the problems I would deal with now?

ABSOLUTELY. When I feel my lowest I sometimes forget my goal to enjoy each day. It's hard when you feel poorly but I need to focus on the better days ahead and surely, they will come. When I see my first flowers bloom I know that my spirit and zest for life will be replenished.

A Day Out

2011-02-08T01:20:00.002-05:00

Today I went on my rescheduled eye appointment. It was originally to have been when I was in the hospital a few weeks ago. I needed a visual field test, pictures of my optic nerves and the thorough exam. I arrived at 2;30 and wasn't taken in until three. They were having problems with the machine that takes the pictures of the eyes. I did the visual field first and then they took the pictures which took forever to print out. I then waited about another twenty minutes before I saw my eye doctor. I believe I actually whined to him about being so very tired and explaining this was my first trip out on my own and that the handicapped parking was not available and I had to walk a long way into the building. This is not like me. He has treated me for years and said that he was a little concerned and offered to walk me out. I did order new lenses for my frames that I have. My eyes are so bad and I wear progressives. The lenses will be $600.00. I had priced them three places and all were the same. The cheaper places like Lens Crafters will not make my lenses. It will take about two weeks to get them. My reading prescription had changed a lot causing me problems when I tried to read.

I had made a list this morning of what I was going to do. As I climbed back into the car I decided that I had to scrap that plan. I just couldn't push myself. I was exhausted and needed to curl up somewhere. The fatigue is still with me and I need several naps a day. The coughing has improved somewhat. I still wake up every night several times. I am either sweating, having bad dreams or need more water. We are expecting some rain/snow tonight. I have to call my internist in the morning and see if she can squeeze me in. I found lumps in my stomach. I believe they are from the injections of Lovenox I gave myself but I need to make sure. They are painful and if I roll on them while trying to sleep, they are waking me up.

I keep giving myself pep talks. Sometimes they help and at other times I wind up making myself angry. I just want to be better. I guess I am better, I want to have enough stamina to do something and enjoy myself. I did bundle our tv, internet and phone. We went with FIOS and now have tons of free channels for the next three months. Every couch potato's dream: constant programming.

The doctors agree that I am getting repeat bouts of pneumonia because of not having my spleen. My immune system is weakened by that and age will also factor into that. There is no fix. All I can do is be careful to avoid sick people which is nearly impossible. The key is to get EARLY medical attention once it is clearly becoming pneumonia. Most likely I will need weeks of IV antibiotics each time. Oral medication doesn't seem to work any longer. When I am feeling better I am going to try to research and see if there is anyway I can try to improve my immune system. I do eat lots of foods which contain vitamins and natural chemicals but perhaps there are more.

Looks like my ativan is kicking in and I will be going back to sleep now. Sweet dreams.

Sleeping Sickness?

2011-01-31T05:57:00.002-05:00

For the first ten days home from the hospital I was unable to sleep more than two hours at a time. Coughing kept waking me up and laying down seemed nearly impossible. For the past three days I have slept about eighteen hours each day. I did wake up this morning at four with a coughing attack that actually got my chest aching. You can still here congestion in my lungs and I cough up so much stuff on an hourly basis. I must be continueing to make it. Lat night I also woke up drenched from head to toe, even the sheets. This concerns me as it kept happening when I had the infected heart valve. I see the pulmonologist on Thursday. She has me scheduled to return to work March 7th. Right now that feels so close. Of course, if necessary, that date can be pushed back. I find that each bout of this illness leaves me weaker and the recovery slower and more difficult. I have learned that I have small lungs, that they no longer yield a normal x ray even when I am doing well. When I was in the hospital I was in "serious" condition. I wish there were a magic pill I could take to guarantee I not have to go through this again. Not being able to breathe is miserable. Coughing until you gag is miserable.
I feel isolated here but I am not up to going anywhere or visiting people. Tonight a neighbor showed up with a few bags of fresh produce and fruit and cheese. I so appreciated that gesture of thoughtfulness.
Today is my sister's birthday. Thursday is Rob's. I sent my sister a card and check last week. I am trying to think of something for Rob. My brain seems disconnected. I know, this too shall pass.

Home Again but still sick

2011-01-23T09:56:00.002-05:00

I was released from the hospital on the 20th I believe. I begged my pulmomologist to let me leave, and she did, without full support from the ID doctor. I have paid for that and in hindsight, I should have stayed a few more days. Rob is wonderful but he has taken off so much time already to help me and I insist he go to work. I have visiting nurses but they see many patients each day and don't spend a lot of time, although I am encouraged to call them with any questions or if I want them to come at any time. This is old school for me. Thing is, the other two times I came home with a PIC line I just had to give myself two ivs of vanco twelve hours a part and one shot a day of Lovenox. (This is a blood thinner that is injected into belly fat. For some reason at times it is very painful and minutes later feels like the sting of a wasp.) My stomach looks like I took quite a beating. Still, as of Friday my blood was not thin enough which poses a danger to the heart valve, so I continue getting two painful shots a day. The ivs are two that are twelve hours a part but the other must be given four times a day, every six hours. This is a new antibiotic they have me on. The antibiotics that worked in the past failed this time. What I did have going for me was that I went to the doctor early on Monday and was on oral antibiotics until Thursday when they sent me to the ER to be admitted. At that time my fever was steadily going up. The chest x ray showed a very minor pneumonia in one lung but the CT scan showed it was in both lungs as well as a lot of fluid.
On my home regimen I am also received three breathing treatments each day. To be honest, they reduce the wheeze but I still cough, a lot.

One thing I value is that I am always open and honest. I am very discouraged right now. Firstly, this is my fifth bout of pneumonia in just under 18 months. FIFTH! This was my fourth hospitalization. This time I had fluid around the heart which I have not had before. It takes me longer to recover and it's hard to motivate myself right now. My lung doctor is wonderful. She understands and spent extra time talking to me, trying to encourage me. She shares my concerns though. One night she had them bring me a small bottle of wine with my dinner as a reward for fighting so hard. I consider her and Rob my support team. In this world good, dedicated and caring doctors are not easily found. I let her know constantly how much I appreciate her.

I am still waiting for forms from my company that were being overnighted to me on Thursday. Until then, I cannot file my short term disability papers and that means at least a month until I get a check once they are filed. Thank goodness we have an emergency account we can hit. Since it was the new year insurance wise, I had to pay several hundred up front for meds and such.
Well, I had only a few hours sleep last night. I couldn't sleep laying down and I sat up in a chair for the sleep I got. Sometimes I wish I had a hospital bed here so I could raise the head when having breathing issues. I never gave it a thought until I had the lung issues how difficult it makes your life. Walking short distances leaves me gasping or coughing. It is my fervent hope and prayer that my lungs will improve. I just hope I can be patient enough until that happens.

Nelle Update

2011-01-17T20:05:00.002-05:00

Hello all, Rob here.
Nelle was admitted to Robert Wood Hospital on Thursday with Bilateral Pneumonia, and fluid in both lungs. Also some fluid around her heart. She has been receiving IV antibiotics and some breathing treatments.
Her Pulmonologist is happy with her progress and she may be sent home soon with a PICline so she can receive IV Anti-biotics at home.
She has no computer in her room but can receive emails on her Blackberry via her NelleMcLaughlin@gmail.com addy.

Saturday Snow and Sunday Sunshine

2011-01-09T09:35:00.002-05:00

Yesterday I had so much to do. Jumped out of bed bright and early and we began taking down the Christmas tree. When we finished with that we made a trip to the mall where we picked up a few gifts and had lunch. My childhood best friend's daughter just had a baby herself. It seems like not so long ago I got the call from her mother's delivery room telling me she just gave birth to a baby girl. She had a son and was so thrilled to be having a daughter. Her daughter had the most beautiful pictures taken and a video done. What a treasure that will be for years to come. Yesterday I was able to purchase some really cute clothing for her baby and it was fun. The snow began really falling and sticking and we cut our shopping short and came home. We continued putting away so many little decorations. Each year I receive more as gifts and at times I find it overwhelming what to keep and what to get rid of. I have many ornaments from friends and family members over the years that each inspire a memory. My favorites are the ones my grandmother made for me. They contain a silver coin from our birth year and she pained our names on the plastic cases. It was so hard not to have her this year. I still miss her terribly and feel the void left by her passing. Ironically, in my garage, I found the tiny pinafore apron she had made for me which matched hers. It had Santa coming out of the chimney.

I have struggled with my breathing this week. Most mornings I am coughing up blood when I initially wake up. I have an appointment to see my regular lung doctor on Thursday. I saw her associate ten days ago and the antibiotics he gave me did nothing. I am still coughing and feeling tired. I have also learned that the heart infection I had in my vitral valve last year has damaged it, causing a thickening which is causing valve regurgitation. I see the cardiologist later in the month and we will discuss this further. Apparently the problem with the heart not pumping well is causing the lungs to remain wet and vulnerable to illness. It's like a puzzle, with so many people trying to assemble the pieces and see the overall picture.

Well, I need to go grocery shopping. I am thinking a bit pot of chicken soup might be in order. It's really cold out the but sun is shining brightly. My New Years Resolution is to try to see the good, even on the cloudy days.

Christmas and a Thirty Inch SnowStorm

2010-12-29T11:19:00.004-05:00

By Christmas Eve I was really under the weather. I had off work that day but I just laid around most of the day. Also we discovered that our leaking faucet was now not only leaking along the top and spilling onto countertops but the hot water was leaking below. We called a neighbor over who had been a plumbing apprentice so we thought he could show Rob what to do. We had the new faucet it was just getting it installed. Pic of new faucet on left. He was not able to do it saying we needed a special tool but he did try to rem

ove something making the water leak below much worse. We had to cut the water off. We went to bed early then woke up wondering I would be making Christmas dinner. My mother had my sister there making a turkey but I was not up to going there. My mother's house is way up on a hill and on my best days climbing all those stairs wears me out. So I put the ham in the oven and hoped for the best. Called my sister and her friend was coming there for dinner and I knew he did a lot of his and her home repairs so I asked if he or my Dad might have the tool. She said they would eat and be here around 2 and yes, Dad had that tool in the basement. We waited and waited and when they were not here by 5 I called another neighbor who was a plumber before he became physically disabled. I explained we didn't want him to do anything but lend the tool. A short time later he and his wife showed up with the tool and Rob began the process. It went rather well all things considering. Once he was in the thick of it my sister and David showed up (of course.) The faucet is wonderful with a sprayer that pulls out OR you can just push something in and it's like a shower in your sink. It was a good choice for us. By the time our neighbors left, hours later I was exhausted. My sister then left and I felt sure it was midnight but it was only eight p.m.! We had only had some ham for dinner (no sides).We had a slice of cake and went to bed shortly.

My Christmas was different but honestly it was one of my better ones. Rob surprised me with a Kitchen Aid Artisan and since I love to bake I was thrilled. Had wanted one for years but couldn't commit to a color! He chose my favorite and it looks great.

The day after Christmas we got hammered without about thirty inches of snow. Both of our companies closed so that was good we had an extra day off. Our biggest problem was making a place for Duffy to go to the bathroom. Rob created a zig zag of sorts. The next day our roads were really bad and so was my cough. I decided not to attempt work which was all back roads. A family member with a 4X4 took me to the lung doctors. They tested me on a machine and told me that I was wheezing again which is usually a bad sign. I have bronchitis and they want to make sure it doesn't become a pneumonia. He gave me the pneumonia antibiotics and an inhaler and sent me on my way. If the wheezing doesn't stop I am to call him and he will give me steroids too. It is already somewhat better.

I took off this morning to go to the dentist using vacation time but I was not up to it and it's a long trip there on roads which still need more plowing. I am going to work half a day (1:30-5:30) today and a full day tomorrow. Then my Friday, Saturday and Sunday off. Yes! Time to use that mixer. Since it's green my friend, Simone has dubbed it the McMixer lol.Green is such a relaxing color but I am surprised at how many people do not like it. Several of my friends love orange which is not a color I like. To each his own.

Well, I want to wish all of you a Happy, Healthy and Prosperous New Year!

In 2009 I had pneumonia three times and had two lengthy hospitalizations. In 2010 I had it one time and a two week hospitalization. My goal for 2011 is NO pneumonia and NO hospitalizations. I am making progress each year. :)

Have a wonderful weekend.

Friday Update

2010-12-17T21:42:00.002-05:00

Today my former boss came in to see a few people and get her mind off her troubles. Her hand is bandaged. She was telling me she left the housefire with only the clothes on her back. Someone had given her jeans, a blouse and a winter coat so she had something to wear. It was good to be able to give her a big hug. Afterwards I left a bit early and went to Target. I was able to pick up a few items on sale for her: a bathrobe, pair of pjs, shawl type scarf (she had them in all colors) and a giftcard for some makeup. We are having a pot luck celebration on Monday and giving our secret santa gifts then so it will be nice to have a gift for her. Some of those participating in the Secret Santa asked for gift cards to give her. I requested an ITunes card knowing she was given an IPhone by the company which was lost, along with her laptop, in the fire. She can at least download music into her phone.

This Christmas has been better for me than last year's. My biggest problem though is parking and walking into stores. Unless I can park VERY close I am unable to shop there. I try to go into stores which have carts I can lean on. This helps so much with my walking. It also makes it so much better when I don't have to carry items. This includes my heavy pocketbook. Although I keep trying to lighten it, there are so many things I feel I must have with me (a diabetic tester, strips and lancets, various medicines, an inhaler, a wallet, a two inch thick packet of cards with doctor information etc., hand santizer and individually packaged wipes.) These are things I just don't feel comfortable leaving at home. I have tried putting all the information possible into my new phone, including doctor appts on the phone calendar. This is helpful but I just can't seem to do without the other items.

I have not had my teeth cleaned since June of 2009. The reason is that during that cleaning I became sick with the heart valve infection which it took about 8 months to discover. I am nervous about doing it, but I must. I have had my teeth polished at the dentist but I am talking about the gum cleaning. I will be on antibiotics for it, stronger than I previously took. My appointment is Dec. 29. I know I have to do it sometime and I have procrastinated enough. Time to just do it.

It has been bitter cold here, 21 during the day and it was 0 at night. They are talking about a Noreaster Sunday. We shall see. Have a good weekend. I only have a few minor things left to get. It's almost here.

Sad News

2010-12-14T18:37:00.002-05:00

Today we got some sad news at work. My former boss who was such a sweetheart had a fire in her apt. over the weekend. She lost her beloved cat and I understand she got injured trying to save the cat. She has nothing but the clothes she walked out the door in. It's so heartbreaking because she was one of the few people I ever worked with who reached into her own wallet when she knew someone needed lunch. She offered to give me her personal vacation time to use as sick days if I needed them. Our company sent her out a new laptop and cell phone today so we can be in touch with her. My heart really goes out to her, especially this time of year.

It is bitter cold in New Jersey. Twenty one degrees right now and going down to 0 tonight. Whew! Thank God I have my Smokey as a foot warmer. lol

We are going to be taking up a collection for our old boss. It's hard this time of year to find extra but we will all manage. This Christmas has been about giving to others for me and I have enjoyed it so much more than other Christmas seasons. Have tons to do but wanted to make a quite post. Say a little prayer for my friend as her heart aches for her fur baby.

Life Goes On

2010-12-02T19:29:00.002-05:00

My life has felt so hectic. Thanksgiving I made a 20 pound turkey. My father's hospice nurse didn't show until hours later so my mother and sister decided just to eat there with their small bird. It was just Rob and I. Later I took them some of our turkey too. It was great to have four days off work but honestly I had so much to do that they flew by. I was able to get some car work taken care of, wrap some Christmas gifts and get the cards written and sent. I also have slowly used the Cpap but only once for the entire night.

Many changes at work. For two years I had the same boss. I just got my FOURTH boss in less than a year yesterday. It's so hard to get used to each one and then they get promoted and move on. I am glad for them but it's hard on us. I will be moving back to my old team (along with half of my current team) and these people are just so thoughtful and loving I am excited for the change.

I am fighting depression this season. I lost my grandmother before Christmas last year but I was so ill I just wasn't really dealing with it and grieving. This year it has hit me like a ton of bricks. I cry daily, sometimes several times throughout the day thinking of her. I know this will pass but it's difficult now.
My aunt said she feels the same way but that we have to think that she is where she wants to be and her suffering has ended. There are things worse than physical suffering.

Well, time to get some bills paid. Hope you are all in full swing for the holiday season. Happy Hanukkah to those celebrating.

Serenity Found Me Today

2010-11-21T19:08:00.003-05:00

Today was a relaxed day. I had a nice glass of wine as I loaded some music into my laptop which is now a year old. I got a blackberry last weekend and I am trying to get some music together to load into that. It was so odd, my grandmother's estate was finally settled. I didn't get a lot of money but for the past year extra money has been rare so we splurged. We each got the blackberry torch (a great deal I might add) and I finally have internet on my phone. I also got two pairs of boots which were badly needed.

Yesterday a respiratory therapist came and delivered my Cpap machine. They name is discomfort. This is what the mask looks like and it is fastened to your head with two separate elastic bands. The top one dug into my head but if it is too loose then there is no seal and the air leaks out. Grrrr. I only made it an hour and a half last night. Going to try to do better tonight. She said it would take time. Perhaps in a year or so...lol.

I am still in my pajamas. My ex went bonkers if I didn't get dressed early in the morning. When I didn't feel well it was really difficult. I am so glad that my life has changed in so many ways. I have freedom to do what I want. Rob never tries to boss me around. He accepts that I am his equal and that I am perfectly capable of making whatever decisions I might need to. Even when I make decisions that he is unsure of, he supports me.

I have had to make some decisions lately that have been difficult and lead to some family upsets. Due to my health I will not be going to my parents for Thanksgiving. My Mom refuses to use her dishwasher and she is getting very bad about washing her dishes. It's a chance I just cannot take. I have tried taking over plastic things and it just doesn't work. My mother understood but my sister was upset, feeling I wasn't making enough of an effort. Well, last year I missed a total of 7 months of work due to illness. I no longer have FMLA and if I go out sick again I can be let go. Sorry, these are chances I cannot take. If I get sick taking precautions, then so be it but I won't put myself in harms way.

Never having been sick a day in her life, she cannot understand what I am going through. I get that but I told her she needs to stop expecting things of me that I cannot give. I am willing to send dinner over to them but not cart an entire meal. My mother has about a dozen steps to get to her front door. I gasp for air and that's without carrying anything! I am on one new med that has helped, at least some of the time. In two weeks the cardiologist will consider changing another med I have been on, thinking it is now part of the problem. We shall see.

Christmas is coming. I refuse to stress myself. From here on out it's about enjoying the moments. I am going to work each day and my down time will be spent doing what I need to do for me first. After that I will be happy to help friends and family, providing it doesn't have a negative effect on my health.

I feel like I am in a good place.

Have a great Thanksgiving. We all have so much to be thankful for: a roof over our heads, food on our tables, love of family and/or friends, and I am grateful for technology which lets me communicate with you. I am so very grateful to Rob, always there, never complaining and just loving me. It doesn't get better than that. My prince came. He wasn't tall or rich but he was honest and kind and loving. I can't imagine how I would have made it through the last five or so years without him. I think I'll keep him. :)

An Update

2010-11-11T07:24:00.003-05:00

For several months after I expected to see improvement in my breathing, I have struggled constantly if I was moving. A few weeks ago I went to them all to pick up some gifts and barely made it to two stores. By this time I was unable to make it back to the parking lot and my car. A visit to the lung doctor told me it was not a lung issue. In fact, she said my lungs sounded good and the oxygen function had improved from the previous visit. She suggested I see my cardiologist. (For those of you who might not have been reading my blog at the time, six years ago I had heart surgery to replace my aortic valve with a mechanical one.) Since then other than an occasional bout of tachycardia I have been fine. Okay, there was the one episode of endocarditis but it was a different valve and antibiotics cleared that right up. My point is that my heart was functioning well.

On Monday night I saw my cardiologist and he was very upset after seeing me that I had not come sooner. I had cancelled on him, he had to reschedule me and my visit to him was two months later than he had requested. He said my heart had not pumped the fluid out of my body and he suspected I had a minimum of twenty pounds of fluid and that is why I was breathless and tired. I had this problem in the hospital immediately after the surgery but not since then. In the hospital I had over thirty pounds of fluid but laying in a bed wasn't experiencing any problems from it. Your heart is a pump and when it doesn't do the job as it should, that is congestive heart failure. It's not something that you die from quickly but over time it weakens. They are going to be watching me carefully now. I was put on lasix, a drug to remove the fluid and in twenty-four hours about twenty pounds of fluid came off. I can walk AND breathe at the same time. It feels so good.

I have never been one to take life for granted. Since my original diagnosis at age 23 I have known that life is fragile. Waking up each morning is a gift for me. I was shaken up at what the doctor said but I have survived so much and there is a lot of spunk left. I am not going to make any changes for now. I will be taking the prescribed lasix for certain. They are also going to try another medicine and get me off my current blood pressure medicine which may make this problem worse. I am glad to know what the problem is and that there are things we can do to make it better. I expect to be feeling so much better and that brings me great relief.

If you have your health, don't take it for granted. It is something so precious and no amount of money can buy it. Life is good. Enjoy it. :)

Chugging On

2010-11-07T19:00:00.002-05:00

I am so tired. I wake up tired...drag through the day and crawl exhausted into bed. This is not how I planned to live my life. There are many reasons I am like this. A sleep study showed that I do have sleep apnea but they told me it would be about two weeks before I would hear from the doctor and I am still waiting.
I am coughing again...and wheezing. The breathlessness is so bad at times that I cry out of sheer frustration. Other days it is not so bad and that makes me crazy wondering WHY? Tomorrow I go to the cardiologist and I feel that is a big waste of time. He never does anything that helps. The only reason I still go is that he monitors my coumadin and I have to have someone who does that.
I am sick of thinking about/dealing with health issues.

I have been at my present employer for three years. I was told I would increase my hours off each month. Have not seen the increase yet and I am eagerly waiting for it. For the past three years I have only had 10 hours off each month. That is for ALL days off; sickness, emergencies, vacation etc. I have never had one day off during that time for vacation. It has all been used for illness. Right now I have one day left which I am planning to use for the day after Thanksgiving. IF I get sick before that day then I will have to work that day.
All my family and friends have off and it is torture to work that day. I am so hoping to have it off. By the way if I call out sick the day before or after a holiday I don't get paid either. Once I was so sick I had no choice and sure enough I was not paid for the holiday. I understand why companies need rules but sometimes people cannot plan their illnesses, OR emergencies.

I went to my friend Pati's this morning. It was a brief visit with me dropping off stuff for her new place. Long story but she got herself in a bad situation
and ended up leaving all her stuff in Florida to get back to family and friends and away from a bad situation. Starting over in your fifties is rough. I was happy to share extra sheets and other things to make this place feel like home.
Her granddaughter was there visiting her. What an adorable child with long, curly red hair. I took her a few items too. I am searching for a mommy and me apron set to give them and I have a gingerbread house kit that I am taking them. Also trying to find an inexpensive cd player and some Christmas music. Most of my best childhood memories are with my beloved grandmother. I recently got a check from her estate. I am trying to use a portion of it to help others. That was what my grandmother spent her entire life doing. She never had a nice pair of shoes and we cried when we saw that many of her shoes had holes in the bottom but if she knew of a child who needed food she was at the store getting them groceries. She lived in a modest home, dressed modestly and was a humble woman but when she died all who knew her praised her life of service to others. I still miss her terribly and I think I always will. I hope to be a small part of the example she lived on a daily basis.

Greetings and Salutations

2010-11-04T20:52:00.002-04:00

I haven't been blogging much. Truth be told, I have been so tired that I am barely making it to work each day. Many, many changes at work. The first two years I worked there I had the same boss. I went out on disability (2nd bout of pneumonia) and returned to a new boss. Out again three months later and when I returned, yet another new supervisor. Huge adjustments for me. I have been back about four months and just gotten used to this supervisor when she announced last week that she has been promoted. Not even sure who our new boss will be. Her assistant is going out for the month of December and I am nervous about who we will go to with problems.

Last week I had a doctor's visit then the sleep apnea study. I was so tired at work last Friday I could barely function. This week has been another stressful week. Last night I came home, just wanting to relax and Rob went to my mother's to pick up something. He returned with check. This was some of her money from her mother's estate. I understand inheritance but I would much rather be given money from someone during their lifetime. I have decided to do a few good things for others with at least part of the money. I have a friend who just moved into a modest home (I cried all the way home after seeing it.) I am going to find her Mommy and me aprons for her and her granddaughter. I will also take her baking pans and supplies for her to make Christmas cookies and I will take everything for them to make a gingerbread house. I will have vicarious pleasure. Perhaps get some pictures of them which can begin an album for Kayla. Kayla lives with her Dad who has custody of her. She is a young six years old and started school this year. It's hard for a little six year old to understand why Mommy doesn't show up for things like other Moms. Her Grandma plays a key role in her life. I think Santa will leave a few things hidden under her Grandma's tree (perhaps another gift.) For the first time, I am excited about Christmas this year.

Fox was off of our cable station for nearly two weeks. They are finally back and I am going to view tonight's shows. Tomorrow is Friday. Can't wait.

Still alive and kicking

2010-10-17T18:57:00.003-04:00

I guess it's been two weeks since my last update. Sorry but life is moving so quickly and very unpredictable right now.
Work has been chaotic and stressful. Last weekend my aunt came to visit my Mom for about five days, then my sister came for the weekend and on her last day here my older brother came from upstate New York.

For awhile my back has been in pain. Not a sharp pain but a constant ache. The worst time was when I woke up in the morning. I couldn't even stand up straight. Last Saturday I went to the doctor to see what, if anything, could be done.
He referred me to an osteopath which I saw on Wednesday. He told me that my muscles all along my spine were very tense and some in knots. He did some manipulations to help them relax. He also prescribed anti inflammatories as opposed to the muscle relaxants the first doctor had prescribed. I began taking them and when I woke up the following morning I was in so much pain. I was wondering about the saying things get worse before they get better. The next day and since then my back has improved significantly. I go back to him in another week for a follow up visit.

This weekend was very low key for us. Rob didn't feel well Friday or yesterday. He slept a lot more than usual. We did go to the grocery store this morning for things we desperately needed but other than that it's been all about vegging.

Our Cablevision is really annoying us as well as it's other customers. We overpay ridiculously and they never give credit even when it's due. Our DVR makes noise constantly and their tech told us that they all do this. Now they have lost all the FOX network shows which we watch. If this isn't rectified by early next week I will switch to the dark prince Verizon Fios. All these companies are ridiculous. It's okay for them to overcharge their costumers but when they are faced with paying out top dollar they put a message on asking customers to complain to the station owners. I am not bundled because I refuse to have a phone that might not work and I pay a ridiculous amount of money just for the cable tv.
I am willing to walk away after this being the third time we have gone through this with them.

Well, time to sit back and veg a little more before the work week begins. On Thursday afternoon I see my lung doctor again. My lungs sound good I am told but I am still very short of breath.

Serene Sunday

2010-10-03T16:48:00.002-04:00

Yesterday was a bit hectic and neither of us were feeling well. Still I made it to the hospital for my check of the blood thinner I take and to the tailor to pick up the jeans I just had hemmed. I stopped by my parents after that. My Dad sleeps more and more these days. His voice is so weak and I wonder sometimes does he have moments of clarity and realize what has happened to him? He never indicates that he does. He was always as strong as an ox and I will never get used to seeing him so helpless.

Rob and I watched The Blindside on tv. That was a good movie.

I am so saddened at what happened to Tyler Clementi, the young Rutgers student who took his own life. I hope the roommate is prosecuted for a bias crime. He needs to be made an example of. To tape and broadcast ANY sex act of another person is dispicable in itself. To do this to someone, a young man, in this cruel and gayphobic world is even worse.
My heart aches for the family and friends of this talented musician. Bullying also needs to stop. I have a close friend whose son took his own life. He was being bullied and being labeled by others. He was so young but couldn't bare the pain of it all. I wish people could wake up and teach their children to be tolerate and kind of others. My son never heard the slang words which label people. I remember when he went to school coming home and asking what words meant. I told him they were words that he didn't need to know or use, ever. I am proud that he judges people on their actions (meaning how they treat animals and other people) not by their color, ethnicity or sex. He was exposed to all kinds of people and he often chastised others who didn't treat peers respectfully. While other people's goals were to have their child in a prestigious college, mine were to raise a good person who cared about others.

My personal chef, Rob has prepared a dinner that is perfuming the entire house. A pot roast with "ROOT' vegetables.
We both took a short nap today and I have caught up some on my sleep. The weekend as usual has gone too fast but another will be here before we know it. Have a good week.

Saturday Wind Down

2010-09-25T18:30:00.002-04:00

Had a really bad attack of IBS in the wee hours of the morning but I was able to go back to sleep finally about 5 and slept until 9. got up and jumped right into what needed to be done. So many errands: took new jeans I got at TJ Maxx to tailor to have about three inches cut off the pants legs. It's hard being 5 2. Rob drove me and we stopped in a pizzeria and I got a salad and he got bruschetta pizza that looked so good. After that we ran to the grocery store and it seemed we just did a fill in kind of order but it still came to $120.00. I did get two bouquets of fresh flowers that I love. Sometimes I just treat myself because I do work hard for the money. We came home and I loaded up the dishwasher and turned it on and started in on the laundry. While that was going I sat down and paid bills. Amazing how quickly $1600.00 goes out the window. A mortgage payment and a few other bills add up quickly. I was happy to see that the hospital refunded me $100.00 on my credit card. I also made a call a few weeks ago and got my primary insurance to pay $250.00 for a bill they processed as out of network. Come on guys, you paid to have a line put in my arm but then want me to pay to have it removed? I am on blood thinner and didn't think having a home health visiting nurse yank it out sounded like a good idea. Last time when it caused a major problem you spent thousands on an ER visit so this was a bargain for you. Really.

Next I cleaned out my refrigerator and sent dinner over for my parents. Chicken and biscuits which Dad loves. Also fresh cooked green beans. We had dinner and I just got done with the clean up and the laundry is about ready to fold now.

Rob has also been keeping busy doing things for me. He put the garage back together after I dismantled an area to find a box to mail our nephew a birthday gift in. Adam was so happy with what we sent and pronounced me a shopping goddess. I got him a nice pair of jeans and hooded flannel shirt from Macys and Rob got him two books he loved.

Not sure what's on the schedule for tomorrow. We did most of what we needed today so maybe it will be a day to kick back and take it easy although we never seem to actually do that. There is always just too much to do on the weekends.

Hope you are having a good weekend. It was 88 today but tonight it will cool off. I so welcome the cooler weather.

The passing of time

2010-09-18T11:34:00.002-04:00

This past year has flown by. For much of it I was so sick that the days unmarked. When I realized the other day that October 14th marks my grandmother's passing as one year then it hit me. I have been going through life on auto pilot much of the time.

About two weeks ago a problem I thought I no longer had reared it's painful and ugly head. IBS. With all the stress with my job, my Dad and my health issues it has been horrible. It is usually cycles of extreme constipation and then diarrhea. I have had the constipation issues and when your job has you accounting for each minute of your day, it only complicates things to the max. Anytime my body is straining concerns me because of my heart valve. Add that stress to the pile that I already have and it only excaserbates the problem.

The past three weekends have been ones where I had to stay home or be at the doctor's or ER. Last night I was afraid I was heading down that path again but after drinking some herbal teas and pacing the floor half the night it seems relief may be in sight. I certainly hope so. It's sunny and beautiful and my sister is in town. I want to get over there and visit for awhile today. I want to have some hours where Rob and I can just relax and communicate about anything other than health issues. On a positive note, Rob's hours changed. I am thrillled about that. He was having to get up at 5:30 a.m. to start his 7 a.m. shift. I could have slept another hour and a half but being the light sleeper that I am his alarm woke me and I was not able to go back to sleep. Now he can get up at 6:30 which means we can have an hour longer to sleep in. With getting up so early we weren't even able to stay awake for the ten p.m. shows we watched.

One of my young cousins, Christie, started a gratitude blog. I read it each day and marvel at how this young lady has turned her life around. She had some rough years but now has a husband, baby and a good job and she appreciates each and everything so much. I am trying to follow her example and think each day of one thing to be grateful for. I know I have so many. Sometimes the health issues overwhelm them and they become my entire focus. This is not good. We cannot change circumstances, only how we react to them. Each day I try to think of something I am happy about.
This week at work we got a raise. It was small but at least it was something. While some people are losing their homes I have a job. When I am too ill to work I have temporary disability to fall back on. These are all positives.
HAVE A GREAT WEEKEND AND THINK OF ONE THING YOU ARE GRATEFUL FOR TODAY.
Have I mentioned lately I am grateful for all of you who follow my blog? I am, more than you will ever know.

Small Update

2010-09-17T07:55:00.002-04:00

I have been neglecting my blog and everything else this week.
On Friday last I was in the emergency room with potassium that was too high. I sat around last weekend like a slug trying to get some energy and struggled to make it through the days at work. Was feeling better yesterday and so relieved it is Friday today. I am actually runnng late getting ready for work but wanted to post an update of sorts.

Last week we noticced my Dad could no longer follow our voices with his eyes. His speech, the few words he said were fewer and inappropriate for our questions and then he lost the ability to hold a spoon and feed himself at all. It is heartbreaking to watch. On Sunday the head nurse of the agency came and verified he had another stroke. He has lost a lot of ground this time. This is his third major stroke in 18 months. I have to marvel that his body survives them. At this point, to survive them is a betrayal of his body. He has lost any quality of life that he once had. They have arranged now for hospice to come. There is a DNR order and they will keep him comfortable but no heroic efforts and I am very comfortable with that. My mind is constantly distracted with thoughts of how much longer he will behere and how my mother will handle it. She lost her mother less than a year ago and I don't believe she had dealt with that at all.

I feel ready for him to leave us. Yet I know when the moment comes it will be very sad. Not for the man he is now but for the young father who was so proud of his children and always made me feel protected. He was never perfect and I would not portray him as such. Still, I have felt a slow but continuous loss over this entire time. I just pray that his end comes peacefully for all our sakes.