idiots

[alan]

As you all know from reading my posts, I'm basically unable to get out to see doctors (or do anything else), because I can't tolerate riding in the van due to the abdominal and back pain (every little bump, stop, and start causes additional shooting pains in those areas, on top of the burning and compound fracture sensations.) My doctor sent some info about me (including the above fact) to a doc at Kernan Hospital, which is a 20+ minute ride from here (way out of my range - I was in agony from a 10 minute ride in June, and had to have the van pulled over three times during the rides to and fro.) Today, I got a call from a secretary there about a arranging an appointment with a (different) doctor there! Jeez, if I could get there, I'd have made an appointment myself (like I did at hospitals all over the area back when I could tolerate rides!) Obviously, they didn't read that part of the information, or I think I'd at least have gotten a call from the doctor to discuss the situation first - that was the whole point of this contact.

I'm really tempted to call the paramedics and head to the E.R. five minutes away - tell 'em I fell out of my chair and hurt my back. That way, I could get my back and neck checked out. Thanks to my back, between pain and scoliosis, I'm having major trouble just sitting up, and I'm sick of it. This is no way to live.

Alan

"Was it over when the Germans bombed Pearl Harbor?"

[This message was edited by alan on 12-03-04 at 01:10 PM.]

[dejerine]

Alan,

With CP we are way off the charts. Sorry you are having such trouble with the simple little notion of a sick person trying to see a doctor. I think maybe your neuropain and other pain reinforce each other. I have CP in the mouth and after some dental work, a year and a half later, am still having pain from the work. I dont' know how long it takes to die down. Maybe your back pain from scoliosis etc. is synergistic with the central pain from cord injury and any motion or bumping sets off the terrible pain. Hope you can find something to help and I wouldn't feel bad about saying anything it takes to get care. That is what doctors want, they just have narrowed vision when it comes to severe nerve pain.

P.S. YOu can really say a lot in a few words, and I think when you are mad you type through the pain and leave longer posts, so I know this event frosted you, as it would anyone.

[alan]

I can't believe what just happened. I spent half an hour typing up a long reply, and the computer ate it! What next?

Basically, I said I'd probably have to finally be driven by pain to kill myself (if I put my mind to it, I could find a way) before people around me understand what I live with, despite all the obvious hints (homebound by pain, unable to exercise or do ADLs, sleep problems, decrease in sitting time, etc.) The rest expanded on that.

I do type more when I'm angrier.



Alan

"Was it over when the Germans bombed Pearl Harbor?"

[This message was edited by alan on 12-03-04 at 01:59 PM.]

[dejerine]

Alan,

I keep trying to think of some way you can get around a little. Some layer of foam deep enough.

Sam's Club here has a big thing called a Siesta Sak (website is siestasac.com), for a hundred bucks. It is three feet by four feet by six feet of foam. I wonder. They have a soft cover available.

Call me a jerk, but it still gets under my skin when people patronize pain patients. I was reading this thing on the net from some doctor at a pain clinic, who said,

"It may not be possible to totally eliminate the pain"

That is an understatement of the first degree. Sort of like it may not be possible to totally eliminate wetness when the tidal wave hits.

Of course, no elimination at all would also be NOT total elimination. Sometimes what gets written about CP is, well...elimination.

[This message was edited by dejerine on 12-04-04 at 12:40 PM.]

[Karen'sMom]

Alan, I feel for you every time I read your posts about your pain. I am very sorry that no one (or meds) has been able to help you with it.

I think your idea of saying you just fell out of your chair is a good one. They won't know the difference and it will get you to the hospital to be looked at.

Please do not try the other notion you had. We need you here.

Darlene
There must be something out there that could help you, damn it! I hope so!

[dejerine]

Alan,

I am very concerned for you, of course. It is partly selfish. You buoy me up. For my two cents, and from my own survival story, it seems absolutely essential that a psychiatrist be meeting with you. I have no idea how that could be accomplished.

It is true that a bad psychiatrist can make things worse. No more powerfully so than when they attempt to talk about something they know nothing about, CP, which they reduce to some other condition, which they have felt their way through, and being familiar with its problems, hold it out as a model for CP coping, missing the fact that quite possibly nothing is worse than severe chronic pain.

However, the one really good psychiatrist who saw me changed everything. He deflected much of the terrible depression, strangeness, and fear that had begun to rule every thought. I am still afraid and still depressed, but I have a few weapons.

I think the depression is as threatening as the pain. It is humiliating to admit we need help psychiatrically, but sometimes it comes to that. Before I got CP I would have bet my life that I would NEVER go to a psychiatrist, and I only went because the pain clinic required it, but it turned some very big things around.

Like many big experiences I remember almost every word, and most of them still sustain me. One big shot in the APA claimed only five percent of psychiatrists were smart enough to help people, but if you find one of them, they are in fact, a great friend.

Best wishes. Sorry if my posts aren't much help.

[This message was edited by dejerine on 12-05-04 at 12:18 AM.]

[alan]

I actually have a shrink.

I wish there was something that could be done for scoliosis. This feeling of crookedness and the constant fidgeting it causes further aggravates my upper back pain.

Alan

"Was it over when the Germans bombed Pearl Harbor?"

[This message was edited by alan on 12-04-04 at 09:24 PM.]