I am slowing down. My body can no longer keep up. The first few months of Dialysis were not that difficult, compared to most you could say that in the beginning it was easy. I am running out of steam. Losing gumption? I have straight run out of STAMINA. I now sleep, most of the day. I can no longer do anything remotely physical on my D-days. It's really bummin me, to think that I am now feeling EVEN WORSE.
And as conditions continue to decline, so does the sympathy. It seems as I start feeling shitty-er, people are expecting more from me and cuttin' me a lot less slack. I don't like to use my illness as an excuse, but unfortunately a lot of people forget I am sick. My entire life I have gotten shit, because I don't "look sick." Sometimes I think my own Dad even forgets that I am not well. He is frequently frustrated when he comes home and I have spent most of the day writhing in pain on the couch, almost as if he doesn't remember the 'writhing in pain' part.
I. Am. Grumpy. Another side effect of this disease! When you feel like a 20 year old stuck inside a 97 year old woman's body, irritability is sure to in sue. If I snap at you, that's why. I'm not angry and I don't enjoy treating people poorly, I am just sick and fucking tired of feeling this BAD all the fucking time. Does the cursing help to demonstrate my point? Because me being grumpy is NOT about YOU, it's about ME. And I do not care, anymore, if you had a bad day at work, or you broke a nail. All I care about is not throwing up at any particular time of the day. (okay, that's kinda a lie, I really do care about the individual hardships of those around me, I'd just appreciate having some thought put into what you are complaining about)
Another factor in me slowing down, is the news that they are kinda sorta forcing me to make a decision as to what I'm going to do from here as far as my access is concerned. I have made up my mind, but wont get my way. I don't have enough in me to work as hard as Peritoneal Dialysis is requesting, but the most awful thing I could imagine would have to be a FISTULA. boo. But, this catheter is just a walking infection risk, and I gotta get it out of me, sooo this afternoon I go in to see a vascular access surgeon to figure the best arm to use and schedule the operation, talk about bummed! but at leeast I'll be able to shower in, like, three months!
I'm here for you Kate, it sucks that you're losing your stamina. Are they ever going to get you a new organ?
ReplyDelete-Aubrey
You know it took me forever in high school to figure out that you were sick... I could never keep up with you! You were always so bold and vibrant, and, from what I hear, you still ARE. Hang in there, Kate!
ReplyDeleteHello, stranger. Just discovered your blog through some 'peritoneal' googling, as I've been doing hemo with a fistula for 14 months and wondering if I should give PD a try. I don't think I could maintain a sterile environment and not really sure how the tube down there feels.
ReplyDeleteMy fistula is gross (for me) to look at, but all the nephs and dialysis staff think it's a "beautiful" fistula, and I apparently get great dialysis from it.
I can't even imagine being in kidney failure 15 years ago. It sucks at 34. It always sucks. But I'm reading how it's sucking life out of you, and I hate to read that. I can relate a little.
Keep writing. Good luck.
Hey, a fistula is the way to go, it's in my upper arm to my shirts mostly cover it, but it doesn't look all that bad anyway, nothing like the pictures you posted. I do at home hemo and before I had the fistula was hooking myself up with the central line, now I needle my arm myself. The teaching unit and I developed what are called button holes, so I needle the same spot everytime, so I don't have an arm full of tracks. Check out my blog at http://www.thisoldkidney.com Good luck!
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