Part of me is happy that we appear to now start planning by going on the offensive by making appointments. On the other hand, the realistic part of me is a bit anxious because I know that no matter how much I plan it all out, no matter how many appointments are made with doctors who have carved out times in their schedules to accommodate me (calling in favors) I will end up having to cancel some appointments - and that is not just embarrassing, but it also makes me feel like a second-class citizen. For example, I'd made numerous appointments with my gastroenterologist and over the last two years I've had to cancel each of about five appointments at the last minute. I become so sick that were the house on fire, I wouldn't be able to allow anyone to haul me out of it. The pain is just so bad that I can't allow anyone to be in the same room with me, much less touch me. How does one ever explain this sort of pain, exhaustion, brain depletion, nerve sensitivity, and so forth that is the legacy of CFIDS/ME/CFS and/or fibromyalgia?
So, this is one huge problem. As optimistic as I am, the rational, practical voice in me says, "this I have GOT to see!" as in "how in the world am I going to be able to see all these doctors?" I need to see about five or six specialists at this point, PLUS get my breast biopsy. Huh? Really? Seriously? Good grief, I'm still recovering from the gallbladder surgery.
In the end, my GP, hubs and I did cover some of the realities of being ill in the 21st century.
- We lamented the fact that one can no longer be admitted to the hospital and have all the consultants come to see you. We remember the days when all tests could be run during your hospitalization, all in one big fell swoop. Back in the day, the consultants would run into each other in the hospital cafeteria, the X-ray room, or corridors if they couldn't manage a brainstorming session. What now takes months and months to accomplish could take a week or less if it were done with a hospitalization.
- We lamented the fact that acute health problems like saving the life of a shooting victim or a liver transplant is done so well, but chronic medical problems are woefully badly done. Everything is so wrong! I had great care when I had my compartment surgery but because of my CFIDS/ME/CFS, fibromyalgia, insomnia, migraines, I could not make it to the hand therapy I needed, once released from the hospital. The plastic surgeon could not understand that if he wanted me to have several months worth of tri-weekly sessions, they needed to be done at my home. I couldn't begin to explain to him that even if someone came to the house I might not be able to handle talking to a hand therapist, much less have him touch me! Forget the fact that all my organs had fluid around them (anasarka) and the urine in my bag was brown because the tissue from all my organs were breaking down (rhabdomyolysis). Forget that I needed two blood transfusions to stay alive. Forget that I had renal failure and pancreatitis. They STILL wanted me in the office and felt I was being difficult and non-compliant in regards to hand therapy. (Note: I was released from the hospital too early and THAT'S why I ended up with the almost fatal conditions, rushed to another hospital less than 24 hours after coming home... in what world is THAT cost-effective?)
- And finally: we think we have a large chunk of the falling problem solved. Perhaps you recall that I'd spent quite a bit of time passing out and crawling about, not being able to walk even the six feet between the bathroom and my bed without hubby's help. It turns out that the muscle relaxer I need was changed to the generic and THAT was a great deal of the problem. The scary part was also how LONG it took to clear the generic muscle relaxer out of my system. I'm back to my name brand muscle relaxer and after six weeks, the falls are almost gone. I do have trouble walking around but much of that is due to the gallbladder surgery and whatever this new "Hunt for Red October" is about.
So, I want to know, how, exactly, will I survive all these visits to specialists without being killed in the long run? I wouldn't think that under the circumstances, a hospitalization would be stretching it. But alas, the hospitalization for a good workup in order to get everyone on the same page and to establish what is going on has gone the way of the doctor's house call. I think a large part of the population out there with "invisible" illnesses knows exactly what I mean. Yes? Comments welcome, as always.
And that's it for the week. I hope everyone has a truly great weekend, feeling their very best, only better. Ciao and paka!