Thursday, November 27, 2014
Sunday, November 2, 2014
Metaphorically, of course.
So, I have a wonderful new primary care doctor. I have mostly adequate pain management. I have a good nephrologist and a so-so urologist. I may get to be in a clinical trial soon that may help. My kidneys are not good candidates for the two experimental surgeries available for this condition and would most likely make things worse. I can't get a transplant because my body would most likely either reject it outright or begin calcifying the new one if it did take. Surviving on one kidney is a last resort for me, not something I want to contemplate. One day I may be on dialysis. I will do whatever I have to to stave that off, but it may happen.
Some days, I'm really good about my diet: no sugar, very little protein, nothing high oxalate. I've given up my beloved tea and drink more water than should be humanly possible. I take a probiotic, am trying out some herbs that may help with keeping reoccurring infections at bay and choke down apple cider vinegar daily.
Some days, I'm not so good about it. I still try to keep my sugar low and definitely no caffeine, but the siren song of french fries are too much to resist. I snack on bacon at work. I can't force down another freaking banana.
I would eat better if I could cook more, but I feel mostly awful most of the time, so I don't cook much. I struggle through work and then I try to lie very still for awhile so my body will calm down. Sometimes it works. Often, it doesn't.
I'm exhausted, all the time. I wake up exhausted. Exercise? Yeah. I try to do some yoga. Occasionally I'll try to go for a walk. But everything hurts. And laying around makes it worse.
So the serpent swallows its tail and the cycle begins anew.
I do have good days. But, most of my time is spent carefully planning out my day so I don't have to do too much. And there is always too much to do, too many balls to juggle. (See what I did there? Another balls reference.... badda bing!)
I hate this disease. I hate that I have it, I hate that I can no longer power through it. It's making me hate my own body and that is just not healthy.
I'm sure stress & grief are a big factor, but there is not much I can do about that. I was pleased that after totalling my car this week I was able to center myself after only a few hours of sobbing and worked through a panic attack without drugs. My chiropractor/wise woman/awesome friend did some energy work on me and was really proud of how strong my center has become.
But, I'm having flare ups every 2 to 3 weeks. It is maddening. I may be biased, but I think I deserve a little break. Just one. Universe? God? Ya listening? You've given me enough to handle for now.
Let's pump the breaks big guy, deal?