Dec 19: realizations & questions (rhetorical)

Usually I post Sunday nights, but haven't anything recently about important stuff--like how I'm really feeling--so figured it was about time. Why should it be running around in my head when it could be down here?

My emotions run the gamut between happy and depressed, upbeat and down, hopeful and not. They usually even out to practical and hopeful, but the troughs inbetween can be hard. I just read back over the last couple of months. The biggest positive--huge--has been the decrease in pain. But any activity more than usual still gives me pain, always the sternal and/or the right back thoracotomy area. By nighttime it's usually both. And Tylenol doesn't make any difference, Motrin helps but I'm not supposed to combine it with the coumadin (blood thinner) because it affects bleeding time as well. Sometimes I "treat" myself to a darvocet before bedtime, but I don't want to get dependent on it and never take it during the day. There are so many basic things that cause pain or discomfort: reaching up high for something, getting out of a deep chair, moving around in bed is still difficult. And you can still pretty much set your watch by my energy crashing at about 3:00, after which I can't do much of anything.

There is also the emotional part of coping with being chronically ill. A friend of mine passed away last year after years of debilitating severe illness. She had been an athlete until she developed ankylosing spondylosis, which fused her spine and kept her from moving without difficulty, the steroids caused weight gain and diabetes which then affected her ability to heal. But her spirit was just wonderful. Not cheerful all the time, having bad days and weeks. When I asked her how she adjusted to being incredibly active to wheelchair bound she just shrugged her shoulders (sort of) and said "That was my life before and this is my life now." It seems so simple to say, but is much harder to put into action all the time. I'm trying to make the adjustment to what my life will be now.

After the pain lessened and I started sleeping better there was a big surprise. I slept all night. For eight hours straight, not getting up to go to the bathroom all night. For as long as I can remember, certainly since I was 19 and started running overnights at the Squad as an EMT, it was a joke that I couldn't go out on a call in the middle of the night without peeing first. One of the reasons I became a paramedic was because then the crew HAD to wait for me to finish. It didn't matter what the call was: respiratory distress, auto extrication, cardiac arrest, I had to pee first. So when I slept for eight hours straight several nights in a row it was literally the first time in my adult life. Because for the first time in over 25 years I wasn't in heart failure. When I was lying down, resting or sleeping, my heart was then able to clear out fluid that it couldn't when I was active, standing or even sitting. My heart and lungs were dealing with this for decades; it's called compensatory heart failure. When I couldn't breath and was turning blue it was when my heart could no longer compensate. But how can I have been walking around in this body for that long and not really know what was going on inside? There is a period of time after someone gets sick that you are angry at your body for it betraying you. It's part of the grieving process to losing your old life. But for years my heart had been struggling, allowing me to work 80+ hours a week, get through school (twice), travel, the physically punishing work of being a paramedic (yes, still my first love). The tiny little opening and diseased leaflets that made up my mitral valve flailing away, my heart and lungs battling to cope. I'm filled with a sense of awe and gratefulness. Is it grandiose to think that God had to be involved in some way to allow me to do all those things for so long?

So what does it all mean? What am I supposed to learn from all this? Am I supposed to change in some way I haven't figured out? Did I miss the 'lightening bolt' realization or message from the higher power about the purpose of all this happening? How do I adjust to this new life? How am I sure that I'm doing it right? Am I supposed to be handling this in another way?

I don't expect any answers from anyone else to these questions. Although if anyone has anything enlightening to say, by all means, please do. But at this point I figure that anyone who is still checking in here also wants to know what you go through while coping with a serious illness, so I'm just letting you know the inner thoughts. Be gentle with me. It's hard to put it out there, because I actually become more introverted when I'm not feeling well. But maybe someone else will be helped by either your understanding, or knowing that someone else thinks the same things. Of course, that's assuming that anyone thinks the same way I do, which could be pretty scary in and of itself.

So, now I'm going to take a shower and go to bed. I'm tired. Thanks for checking, Laurie