The price of decent coffee is unfair. To me, Starbucks tastes like civet ass. Let’s just assume I’ve had the pleasure of experiencing such a thing. It’s overpriced garbage, but I’ll still drink it if there’s nothing else. Caffeine is caffeine. Knowing I’m never going to get better is also unfair, though it doesn’t tend to ruin my day the same way starting a morning with a shitty cup of coffee does. I don’t know how we, me and the civet in my pocket, determine what’s fair and what isn’t. We tell me most of what happens is unfair.
I watched my husband nearly die, go through major surgery, then 6 weeks later he could outpace me in speed and endurance by an embarrassing amount. He had his chest cracked open. What in the hell was my excuse for dragging ass?
At 8 weeks, he’s back to work and running around evenings and weekends like nothing happened. Even his blood count went back to normal after two months. How is that fair? I’m not saying I wish he had been doomed to live a life as a useless fuck much like his wife, but I am quite jealous. Not too long from now, he’ll forget what it’s like to be so exhausted even showering twice a week can be considered a major feat of strength – something I wish I too could forget.
Is it fair that the past seven years of my life are documented in clinical terms like I’m a lump of meat? I doubt that I’m even human anymore. There are plenty of things about myself I’d rather not know, and I should have known better than to give out the names of my home providers/specialists during my short hospitalization because all of my records from Cleveland were faxed to them. I did sign a release form so that they could request them in the future. I suppose continuity of care is important, especially since without it I could turn into a penguin or something. I wasn’t even back home when the calls to schedule follow-ups with my Gastroenterologist and Nephrologist started coming in. I ignored, then ignored some more. After the third call, they stop calling. Can you tell I’ve made a habit of this? To think I spent so much time stressing over people not calling me back when I actually needed them to…
I called the appointment line last week and appointments were booked for the next week. This week. I don’t think I’ve ever gotten in without a three-week wait.
I’m being referred to JHH after 100% of GI doctors I’ve seen in the past four months agree that I need surgery to remove the most diseased portion of my small bowel. It’ll be a while before it happens, but getting set up with the appropriate butchers, getting my h&h back to appropriate levels, jumping through their hoops and getting an actual date is a battle.
After what happened with MC, I’m happy to go elsewhere for surgery. I still hesitate to agree to this because it really won’t fix anything. I may be able to have a more varied diet and not have to worry so much about obstructions, not to mention a body does need proper nutrition to heal itself, but I’m still left with a stomach that doesn’t function properly and spotty disease from my upper small intestine all the way down to my transverse colon. If Crohn’s only affected this one section of my gut, this surgery could put me into “remission”, but nothin’ is that simple for me. I’ll likely decline, unless there’s a better option. One that doesn’t require such a traumatic assault on my body.
I also had a renal ultrasound before my appointment with the nephrologist as I was instructed to have the suspicious spot on my kidney demystified as early as possible. This was in August, if I remember correctly. I put it off. The lesion – cyst sounded way less threatening, but now she’s calling it a lesion. Fantastic. Mass, tumor, lesion, whatever – in my left kidney has grown in the past five months and my nephrologist is scheduling an MRI, then a biopsy. Percutaneous organ biopsies are not fun. They keep me awake for them. I prefer to sleep through things like that. Sedation with anxiolytics doesn’t work all that well and though the anticipated level of pain is always worse than the actual pain during such procedures, it still really sucks and I don’t want to deal with it.
Either it’s cancerous and I lose the kidney, or it’s benign but continues to grow and chokes out the blood supply and I lose the kidney, or it’s benign, doesn’t grow, but magically turns into carcinoma and I lose the kidney. If obtaining the biopsy gets fucked up, I could lose the kidney. She told me sometimes it’s difficult to distinguish between what’s benign and what isn’t, so they treat it as if it’s malignant, “it’s better to err on the side of caution”. I don’t see any scenario in which I don’t lose a kidney. My very brief hiatus from dialysis would come to a permanent end if I lose one. I’m probably jumping to conclusions and expecting the worst because that’s my life. I’d rather wait until it’s too late to do anything about it, keep the damn kidney and die with it.
I remember when my doctor wouldn’t even use the “c” word because she was afraid I’d lose my shit. I haven’t lost my shit over it, but I am feeling extremely indignant.
It’s better to ignore these things and say, “maybe later.”