Sunday, November 2, 2014

MSK, You're Breaking My Balls

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?

1 comment:

  1. The cycle of illness is crazy maddening. I'm so sorry it's continuing.