The Offensive
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!
Oh, Irene, you've got quite a challenge ahead of you! Good luck and God bless.
ReplyDeleteRegarding doctors and hospitals, my mother will tell you neither are as good "as they used to be." She is continuously lamenting that you can't trust doctors or hospitals any more. I remember she was in the hospital about 25 years ago for almost a month! Most of that time, she was just having a good old time. She loved the doctors, the nurses, the food! They really couldn't figure out what was wrong with her (she had a vague stomach pain) and finally took out her appendix. She was sorry to have to leave!
On the other hand, she went in the hospital last April with severe pneumonia. She really almost died. Her experience this time around was horrendous. She must have had 12 different "doctors" as this is a teaching hospital. One doctor said she might have TB so they put in isolation with an extremely noisy air filter machine for a week. My sister and I kept turning down the speed on the dang thing. Twice, the nursing assistants lied to me about her treatment and she went two days without a wrist ID (accidentally cut off by them and I told numerous people about it).
Well, I complained to the hospital administrator (whose office was in a completely different part of the complex well away from the actual hospital) but of course nothing came of it.
Now she says if she gets sick, she does NOT want to go to the hospital. I have to agree. It's just crazy. Seems these days the hospital can be dangerous.
This is a long post - sorry I've gone on.
Keep up the fight, girl!
Hope you have a good Christmas.
Martha
It's truly sad how downhill medicine and these hospitals have gone. The rooms get fancier but the care gets worse, factory and business style. It's an ordeal to be in one. You're on pins and needles the whole time you're there and then really do need someone with you as a health advocate because of so mistakes going on, gigantic ones at that. It's all business today, unfortunately. Ugh! I could write a book on the state of hospitals, staff, training (or lack of it) and so on. And I really don't like the younger generation of doctors because our country's finest are no longer going into medicine, but into fields that are better compensated and garner more respect. We're getting mediocre doctors with this new generation. Saw it at "the major medical center" and it scared the crud out of me! You won't see me going there unless I have an acute freak problem. For chronic illnesses, stay away as much as possible.
DeleteThis is most certainly a hot button issue!
I hope you have a great Christmas, Martha! xx