If you don’t read any of the depressing stuff below, at least read this:
My phone died last week and I lost most of my contacts. If you want to stay in touch email me your phone number so I can return you to my contacts.
It is getting difficult to keep my sense of humor after I realized that all the PT and OT were really for nothing and nobody was treating the underlying cause of the weakening which is CIPD.
In other words, tons and tons of doctors from neurology looked at me, gave the CIPD diagnosis, (which in case you haven’t been following this means that the sheathing covering all the nerves in the body (P=Poly) are being destroyed and probably can’t be repaired and that is causing chronic neuropathy) and sorry about that but at least I didn’t explain the naming of CIPD.
It’s been over 6 months since that diagnosis was made and I’ve been steadily getting weaker. There are ways to treat it, but not to bring you back to where you were; at least that’s the info I find through Google. The only way I realized it wasn’t being treated was by accident.
I went for a referral for a scooter/wheelchair a few days ago. On the list of diagnoses was CIPD. I looked it up and realized that I had most of the symptoms and nothing in any of my medications were dealing with it.
I then went to the rehab place to be fitted for a mobility device. They decided that the referral was wrong and that since I’m getting weaker I’m eventually going to need an electric wheelchair.
I tested one out. Lovely. But it meant that I needed a second referral from the first referee. So back I go. Another ten miles, I mean ten blocks, in the rain on the dying scooter.
Lucky I didn’t get pneumonia.
The wheelchair rehab person had sent the first referee all the things she needed to say. I asked her why I had to come back since she already had the info she needed. They want you to be here.
How would they know? I didn’t sign anything.
That’s just the way it is.
I go back to the castle and call the number I was given by the nice rehab lady who measured me for a wheelchair.
Call. The assistant or gatekeeper or admin or whoever she is is not available. I try it a few more times than give up. Oh, at one point I call and get a human voice that says hold on a sec, puts me on hold and after listening to muzak for 45 minutes. Just for the hell of it, I call back and this time I get the previous msg that the gatekeeper has left the building and to leave a msg.
Today was different. Around 11pm I called to get the CIPD expert and the gatekeeper was about to put me on hold when I said – don’t put me on hold. I called yesterday and he kept me on hold for 45 minutes and then never answered the phone. And you never called me back.
“What’s your name?”
I tell her. She (the wizard of CIDP) has an opening on the 24th of Oct.
“Fine. I’ll take -“
“No I’m wrong about that. How about the 22nd at 1:00?”
And it pisses me off that all this time I’ve been deteriorating and I’ve thought it was my fault for not working out enough. The thing that nobody seemed to notice was that when I got out of Cardinal Cooke rehab I was able to walk a few blocks with a cane, and up two flights of steps with the health aide’s help.
Even though I was still going to PT which was a block away and they were working my legs, my legs were getting worse.
And frankly, at the castle, everything got worse.
I don’t know what’s going to happen if I get a wheelchair because I’ve been told that one of the requirements of assisted living is to be able to walk 150 feet.
I’ll deal with that when it happens. It will take 3 months (more or less) to get the chair.