It’s Official…

…I’ve had ENOUGH!

Holding it together these days hasn’t been easy, and I’ve cracked a few times, maybe a few too many.

Medically speaking I’m doing OK. I’m almost 10 months post heart transplant and the doctors still haven’t been able to fine tune my medication so that I’m not always adding or removing something I take daily. Some of it makes me sick, some of it makes me feel weak, and the big one makes me feel exhausted for no reason at all. I know my body is strong; how could it not be? I have Primary Amyloidosis (AL), which by the way, has a 6 to 12 month mortality rate, I’ve survived over four years. I had a heart transplant because the AL put me in acute congestive heart failure and caused a lovely case of restrictive cardiomyopathy. Now I’m told I have Osteoporosis in my lumbar 1 – 4 and am close to having it in my hips as well. All that is a result of the chemo therapy I received for the AL and the anti-rejection drugs I take for my heart.  I’ve been hitting the gym for several weeks now. Not knowing at the time I started about the Osteoporosis, it was a good thing I did. The most effective treatment for it is weight training, which is what I’ve been focusing on to build up the strength I lost while I was sick. But my back and hips hurt and although weight training is ideal, not necessarily at the pace I’m going at. I can’t win with this body of mine.

Then there’s the food. The trainer at the gym wants me to eat a certain way, which I’m totally willing to do within the parameters of what I can and can’t eat being a transplant patient. In reality it’s not that different than how I was eating before the transplant. However, my stress level is so high I can’t eat, and not eating is just as bad as eating too much. How do I get the calories I need in a day without throwing it all up because I’m so stressed out my stomach is in knots? I’m trying, but there isn’t a week that goes by that more stress isn’t placed on my shoulders by someone.

There’s also a family component to all this. Issues far too complex for me to even begin to figure out, and I’m not 100% sure I want to. I have two married sons, one of which doesn’t have much to do with us and his wife even less. The other and his wife live with us, which creates it’s own set of issues that I can’t address because it’s causes me even more stress than I can handle. I have a mother who I’m afraid of and I couldn’t tell you why, other than I hate the sound of disappointment in her voice when I can’t do what she wants me to. I still have no idea who my biological father is, which causes me more hurt than my mother can imagine. But I keep the peace because I think that’s what I’m supposed to do? I don’t know?

I left the church I’ve been a member of for over 10 years. That’s been a gut punch to say the least. I think what hurts more than anything is they either haven’t noticed or don’t care; either one isn’t great. I’ve tried to get past it and attend church, but I can’t get out of my mind how little they did when I needed them the most. I’ve gotten a handful of phone calls in the last five years, but no significant support for my “church family.” Now I’m torn about finding a new church because I don’t want to be hurt like that again. I surrendered myself to God in that church and the keepers of the church were not very good stewards of my vulnerability. How could I go back to that, and how do I try a new church not knowing if they will do the same thing?

School is starting in about two weeks and I go back and forth over whether or not I can handle it. Some days I feel confident that I can do it and others I think it could be a huge waste of time and money. I’m 47 years old getting a degree in dance! What was I thinking? I’m not sure I’ll be able to keep up, but I’ll never know unless I try. The fear in me wants to stop before I get started, but then I’ll always wonder if I could have made it.

Every way you slice it I have stress coming from all directions. Some of it I may have control over but some of it I never asked for, but have to deal with it none the less. I lose sleep at night thinking about all of the things I should have done or didn’t, or should do, but don’t feel confident enough to stand my ground. On the surface I may appear strong, and my body may be, but my emotional state is not. I wish I had the emotional confidence to tell the people in my life what I need to tell them and not have their reactions affect me so deeply. And, of course, the ultimate fear is that they will all stop coming around all together and I’ll be physically alone and emotionally alone at the same time.

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