Sunday, November 21, 2010

Serenity Found Me Today

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
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. :)

Thursday, November 11, 2010

An Update

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. :)

Sunday, November 07, 2010

Chugging On

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.

Thursday, November 04, 2010

Greetings and Salutations

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.