Soup line rant

[Guest guest]

So today I went back to the chronic pain group here. I have been going to

this teaching university clinic/hospital for about five years now for all my

EDS concerns. They are the ones who initially dxed myself and my two

daughters with HEDS

A year ago the chronic pain group promised to help me with my assorted pain

issues; asked me to name the top three; we'll go through them one at a time

and address each... yadda yadda. I felt encouraged that we were finally -

after five years - going to get all the issues eventually.

I chose the following three pain problems to address first:

1) pain in my leg; I think this is a shortened muscle. Initially they were

going to do a medial branch block in the lumbar spine to see if the problem

was my spondiliothesis area

2) tmj - for about four years I have been trying to get help with my

dislocating jaw. I wake and it is dislocated on one side. I needed a jaw

splint. To have it paid for the craniofacial surgeon had me have a sleep

study done which did show sleep apnea and the need for this brace and

The c-pap machine. Then I was sent off to the tmj specialist; who refused

my insurance and everything stopped there.

3) my bilateral thumb pain; feels like the bone is going to stick out the

base of the thumb muscle. The muscle and tissue is about four times the

size of a normal thumb; there is an obvious bone spur or something in there

and I need an xray to at least find out what is going on in there.

There were some issues that came up that I thought that we had ironed

through (the mmpi) and that things would get back on track once I met with

the pain shrink -- I did do this and signed a release to speak to other

therapists who have done testing in the past, be provided with copies of

that testing and also gave a letter from a professional, a phd, saying I was

receiving **no** secondary gain from my 'claims to pain'. I met their pain

shrink, we chatted. Still I did not hear from them and I called and

called; eventually got through to the initial doctor. When I went in to see

him he was to have met with my 'team' of doctors and they were going to come

up with 'the plan'. Well; I went in a month ago and he said they had not

met; yet, and felt they owed me a true assessment and wanted to meet with

'the team' first. I was confused; I thought this had already happened.

Waited another month and began calling and calling. Finally got a return

call; that they were meeting last Friday and would meet with me on this

Friday (today). I was still hopeful that something could be salvaged.

I went in today and a totally different doc came in. it is a 'teaching

hospital' and they sent this brand new doc in to tell me that their

recommendations were:

1) go to pt (they had held my pt instructions from a year ago waiting for

the appt after 'the team' met.) for back strengthening

2) join EDNF (I have been a member for years now)

3) find 'alternative' methods for my pain control (don¹t ask for pain

medications - which was not even something I had discussed with them yet)

This guy had not even read my file and I asked him why this change in

proposed treatment. Other then the fact that I had EDS - he knew nothing

about me. So he began reading my file with the usual list of pains that we

all have; all the gi concerns - everything listed in my top three concerns,

plus more - five pages full.

Then he closed the file and said; 'let me explain it this way: I think of

it as a resteraunt analogy where some people who have insurance get to go

the the four star restaurants; they have full courses; there is desert and

they are treated with the utmost respect. You have Medicare and Medicaid;

you go the restaurant with one star; the waiter is rude, the food is cold

and you don¹t get half the items you ordered. What you need to do is get the

list of providers from Medicare and see if you can find one of those who

specialize in EDS " he could tell I was getting more upset rather then less;

would not let me speak. He says 'Listen; I am only supposed to spend 15

minutes with you; but I am spending more in order to tell you these things.

I shouldn¹t even be telling you this much. In fact I have spent so much

time with you that I have missed my coffee break. I don¹t mind doing this

because you seem to think we are giving you the brush off; and I am trying

to explain to you what the situation is. " He actually told me to get a job

that paid good insurance so I could get the care I needed (duh) and he got

up to leave. So I said to him; " A year ago when I came here I only had

Medicare and Medicaid; you have a write-up there in my file discussing my

proposed initial three pain issues and what this pain group was planning on

doing with it. My insurance has not changed in the last year. Why was I

going to a four star restaurant a year ago and now I am standing in the soup

line?' and he shrugged and walked out the door.

So I am thinking I am completely out of health care now; even though I do

have insurance. It kind of astounds me. I have two insurances; both mean

nothing. I cant think of it too long without getting really angry or really

depressed. Yet I have to fix it; and I have less power over the situation.

People are on this list all the time; talking about their surgeries and

their medication; and I was already getting next to nothing. Now I am

getting even less.

So what is the deal? Are the people on this list with the surgeries and

medication being treated unnecessarily; or are people in my situation

actually expected to stand along the side lines and watch and keep our

mouths shut? Are we really expected to die earlier? Are people without

much insurance with brain cancer supposed to stand in line with me and shut

up -- or do they make exceptions for those people because they are

'terminal'? Of the non-terminal people with minimal insurance -- are they

all in line with me as well? Or was this some sort of red flag within the

group to no longer provide me with care?

It is difficult enough to read here and try to understand what types of

things can be done for people with EDS; then to have to decide; well

something *could* be done but I don¹t get offered that treatment.

Are only the people *with* insurance speaking up here? Of the 400 people on

the list how many are sitting around beating their heads against the

insurance walls and realizing that something could be done and they are

doing without? Are all those people getting the same line of garbage as I

am 'that's life -- just accept it - and shut up'?

Thank you sir; may I have some stale bread crust with my watered down soup

please?