One thing I will say about all of the chaos surrounding MC’s induction into the world of illness, is that I haven’t had the time or the opportunity to think about what’s going on with my problems. I’m not allowed to say “I pissed straight blood this morning – I think it’s time to lay off of the *insert random food sensitivity here*”, because at least I’m not having heart surgery!
Yesterday as the Mister was coming out of sedation, his Mom was talking about how much time they spent with him at Children’s Hospital when he was a kid, yet she brags about how healthy he was – so this diagnosis is a huge shock and it’s not possibly familial because he is such a strong, healthy person. MC had to wait to get most of his vaccinations until he was already in SK because I was immunocompromised and he didn’t want to risk exposing me to something if he got a mild form of anthrax, or whatever else they wanted to stick him with, so again, this is in some way because of me. He looked at me, then looked at her and said, “I think Kara has been in the hospital way longer, and all by her lonesome…” She started counting and she was at was almost a month total. A whole 30 days! By the time he came back to the US, I had my count figured out to be 48 days, not including appointments and diagnostic procedures. That doesn’t include this year, which easily doubles that number. I didn’t say any of that, because it’s not a fucking competition. I did say I’m something of a celebrity on the internal medicine floor. “That’s not something you should be proud of.” No shit. It’s called HUMOR.
My health concerns aren’t a factor in any of this. When I told her I have dialysis tomorrow and I can catch a ride with them to get’er’done while MC takes care of his pre-op stuff, she asked if I could cancel or reschedule, because I REALLY need to be there WITH them. Okay, when? The next week and a half is booked solid with other stuff. I also have an appointment with my GP on Friday, which made her upset too. We need to put all of our energy and focus on him now – we don’t have time to take care of me. If I take care of me now, my demands are much lower than they will be if I put shit off. A total of 4 hours this week, versus many hours in the ER, transfer, and a 3-7 day hospitalization. I’m not good at the maths, but it looks like my way is better.
In my corner of the health world, it’s not looking so good. I’m afraid my kidney function has declined a bit because I’m waking up with peripheral edema, and the reappearance of gross hematuria is never a good thing. This may mean that I’ll have to go for dialysis more often and have fluid restrictions, which is most decidedly a huge inconvenience for everyone. My bowels are protesting over the small amounts of foods that I am eating, and I’m terrified of starting the steroids I was supposed to begin two weeks ago out of fear of actually murdering someone or going legitimately psychotic. The benefits are many, but the side effects are too severe. I may call to set up my first remicade infusion after MC’s surgery just to make sure he’s taken care of in case I have a reaction to it. I’d prefer this happen while he’s in the hospital, rather than his parents having to deal with me and take care of him at the same time. I’m keeping all of my digits crossed that I can manage to avoid a health crisis while they’re here, because I think I might be more inclined to give up the ghost than I would be otherwise. I like to think a big portion of staying alive when you’re critically ill is determined by how much fight you’ve got in you. I’m running on empty. If I saw the light at the end of the tunnel, I’d take off running towards it.
I jacked up my back while mopping last week. My magical ice/drug combo seemed to take the edge off until I cleaned two bathrooms. Nothing is helping now (which is a small part of the reason I’m not sleeping – most of it being anxiety) and my nethers went numb. I got it good. That fucker is inflaaaaaaamed. I had a small problem with ‘holding it’ while walking through the hospital yesterday but was able to quickly remedy the situation by ducking into the nearest restroom. Thank you Crohn’s for teaching me to never leave the house without spare underwear. And you know Harpy had something to say about it.
Oh, yeah, I had an oophorectomy about three weeks ago and I’m supposed to connect with my GYN soon, but forget that. Forget me. We’re not supposed to focus on that. (Fuck that)
Edit: We had a “family” intervention after dinner. MC stopped by the house before class to change into normal person clothes and found me crying in the dark. I explained why and apologized for being so damn sensitive and his puppy face only made me cry harder. He apparently reprimanded Harpy when he got home and called a family meeting. It ended with a group hug. Those are some wide people. Thank goodness for my ridiculously long arms.