Friday, June 19, 2009

Losing My Religion

I just don't think I can do it all anymore. Bone-deep fatigue has taken up permanent residence and I spend afternoons at work trying to trick my brain to wake up when all I want to do is put my head on my desk. I spend evenings trying to fulfill my baking commitments when what I really want to do is lie down at 7:30PM and not move. I'm not experiencing nausea yet, but I am often a bit light-headed and I have some pain in my kidneys virtually every day. Last night I hit the wall at 10PM after three hours of baking, and when I lay down the room was spinning.

None of this is a surprise. With my kidneys failing, toxins are building up in my bloodstream and oxygen is not being transported effectively to my muscles and brain. But because of the incremental nature of the disease, it's like slow torture. Some days, maybe two out of seven, I feel pretty good and have a normal day. I clean house and make lists and plan new projects. Most days, though, I am very grateful that I have a private office at work so no one can see how little work I'm getting done.

It hasn't been all bad the last few weeks -- some major work stress has been resolved (for the moment), Garrick graduated from elementary school, and we had a great yard sale (raising $159 for PKD research) -- but my recovery times seem to be getting longer and longer and my physical stamina is definitely waning. I'm going in for blood work next week to see how far things have progressed. And I'm trying not to listen to the voice in my head that wishes that we could just get this over with. I'm not sick enough for dialysis or a transplant, and until I am, I'm just going to be exhausted and not have the energy to do the things I want to do.

I want it over with, already.


Domestic Goddess said...

Sheesh. I cannot even imagine having to deal with this. It's like living with a ticking time bomb. The stress must be overwhelming.

Christine said...

I wondered how you were doing with all the baking. And I thought of you when I joked with my sister that we should open a bakery (and bake what, I couldn't tell you, but you know)...then I thought about the stress and the hours and my "real" job and figured maybe not so much.

My mother-in-law went to Vandy the other day to get tests and such to see how to go about her kidney stuff. Her sister, if a match, has offered her one of her kidneys. They want to take out one sick kidney and transplant the sister's in two separate surgeries. Plus, the kidney they want to take out is her more functional one, so she'd immediately be on dialysis for 4 weeks until the transplant surgery. There were a couple of other options, but they're all kind of yuck.

I'm sorry, I truly am. I wish researchers were closer to a cure. I hate to think how many years it will be when my husband is going through the same things.

HG said...

Oh sweetie - I have no words to offer, just virtual hugs and real thoughts.

Lora said...

I wish I knew what to say. I'll be thinking of you and hoping something comes up to make you better soon.

AnnL said...

Nothing to say just sending hugs and warm thoughts.

Anonymous said...

Oh, my dear, what is there to say? You are often in my thoughts.


Bridget said...

Just wanted to let you know that I'm cheering for you. And also I promise to stop smacking my head down on my desk now because I don't even have an excuse.

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