Soup line rant

April 9, 2004

Perhaps, sending it to one of those shows such as 60 minutes or 20/20 would be

good, too. I'm sure there are many many people here in the US who have to put

up with this type of non-care care and are being insulted in the process. Even

those of us with insurance aren't immune to this kind of treatment. Perhaps,

the AMA, too --- do they have an ethics board? It is said that we have one of

the best medical care systems in the world --- well, if so, I'd like to know

where it is (perhaps it is reserved for those in power??), cause I haven't seen

it.

Sorry I guess I'm being really cynical -- so I'll stop now.

Sorry, again and thanks for listening.

Love, Patti

RE: " Soup line " rant

April 9, 2004

Don't be sorry, Patti, I couldn't agree MORE!

Love Lana

Re: " Soup line " rant

Perhaps, sending it to one of those shows such as 60 minutes or 20/20 would

be good, too. I'm sure there are many many people here in the US who have

to put up with this type of non-care care and are being insulted in the

process. Even those of us with insurance aren't immune to this kind of

treatment. Perhaps, the AMA, too --- do they have an ethics board? It is

said that we have one of the best medical care systems in the world ---

well, if so, I'd like to know where it is (perhaps it is reserved for those

in power??), cause I haven't seen it.

Sorry I guess I'm being really cynical -- so I'll stop now.

Sorry, again and thanks for listening.

Love, Patti

RE: " Soup line " rant

April 9, 2004

Laxity, I don't know if this will help, but the worse, cold hearted pain Drs we

saw were at the University Hospital. One frustrating, degrading appointment

after another. What I find strange is that I have private insurance and my

primary says we will have better care and more options when Dylan gets the state

insurance. I don't think it's all the insurance. Those Drs were just heartless

cold idiots. I refused to play the waiting game with my sons pain. By the second

appointment I could see if they were willing to really help. If they played

their games, I searched for another Dr. Manytimes, I was so upset when I would

call to get an appointment, I broke down and cried on the phone. I never planned

to, but they got us in quickly. I know, with state insurance, there are some

meds and procedures that aren't covered. And those with private insurance can

have covered. It isn't fair, but for now that is the way it is, until it can be

changed.

This student Dr you saw has allot to learn about bedside manners. Sometimes I

wish these people could live a couple days in our shoes. You have waited way to

long to get help with your pain issues. Find another place to go.

I fight insurance at least once a month. I saw a change when Dylan got a case

worker. I don't have to fight as hard anymore. I call her and she does allot of

it for me now. There is no good insurance when you have a real problem. None of

them want to pay. I just don't take no for an answer, until I have exasted all

options.

Don't give up. Find the right Dr for you. Cindylouwho

" Soup line " rant

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?

To learn more about EDS, visit our website: http://members.rogers.com/ceda2/

------------------------------------------------------------------------------

April 10, 2004

In a message dated 4/9/04 5:28:13 PM, Laxity writes:

*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?

Yes. That's exactly the situation. If it weren't for good luck with a couple

of doctors, I wouldn't be getting any treatment. And as a reminder, the only

treatment I'm getting is pharmaceutical. It was slightly better on Medicaid,

because the county has programs in place for Medicaid assisttance. Since I went

on Medicare, though, I'm paying out MORE in medication each month than I get

in SS disability payments.

I've paid for my pain doctor and medication, full cost with no insurance,

because the district refuses to prescribe anything for chronic pain. I pay for

dental full cost. I get no surgeries, because the only options available aren't

any good. I'm paying for counseling -- not full price, for some reason

Medicare covers that. I'm paying full price now for ALL my other medications. As

I

said: I get $833 a month disability. I pay over $900 a month in drug and medical

costs.

The quality of my care? One of the rotating doctors (since it's a public

health clinic, I'm not entitled to a specific primary care doctor -- the one I

have treats everything BUT my EDS) told me, in response to my osteoporosis

getting worse after a year of treatment: " You need to drink more milk and get

some

sun. " Their advise was to get skin cancer and to drink something that

aggravates my stomach problems. The response when I complained was to consider

myself

lucky I got ANY care at all. There is NO ONE in the health system of the fourth

largest US city willing to take me as a regular patient.

*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?

Dear ones, that's all I do. I do without ANYTHING that might help me unless I

pay for it myself. Oh, if I fell and broke something, they'd probably patch

me up -- as though I were a normal patient.

I really don't know any answers. I wish to hell I did. My life -- and

', because he had the bad luck to fall for someone with my problems -- is

worthless; we will have no retirement -- if our HOUSEHOLD savings is over $5,000

you can't get Medicaid help here. You know, I don't really care about getting

married to him, I just don't want his life ruined because he's living with me!

I had to bring him up in the Medicaid assessment, too, because it was obvious

I wasn't paying rent, and that had to be accounted for...so I get to spend

what we managed to save until we're poor enough to get some help again.

It's all I can do to not be depressed. WITH the psychoactive drugs.

Confronting the reality leaves me shaking...all my life I've been a societal

reject

because of who I love...and now, because I was born with a health problem, I get

rejected twice-over.

So, yes, we're all fighting it. It's stupid, it's irrational, and it's

absolutely evil, as far as I can see.

April 12, 2004

You know what- ,,,, if you do end up going bankrupt - don't feel bad- been thru

this too- ( another embarrassing step that I'll admit to ) Its not fun- but at

the time there was nothing else to do.........

I dreaded it, I tried so hard not to go this route- we started out with Chapter

hmmmmmmmm ( too late for me to be using thinker ) - the one where you pay so

much per week to a trustee - so they yank it out of your weekly paycheck

whewwwwwwwwwwwwwwww there was no way we could keep that up..........

We ended up doing the complete bankruptcy, still had vehicles- a house- we may

have had bad credit but because of our bad credit, we were able to get a loan

and turn oour small house into a huge one with a loaan from a bankruptcy

honored bank........ go figure........... and I will bet bottom dollar here this

is gonna shock ya's but my house payment for a 2300 sq ft house- with 2 acres of

land is only 270 per month......... full basement- full upstairs......... about

5 bedrooms up there.........

Our credit was just as bad as we tried so hard monthly to make our bill

payments------ tears in eyes , frustrating...... very frustrating! But - darn

glad we did it, I am anyhow- even if it gave me a bad credit rating for 7

yrs......... , to tell you the truth, we had more chances for credit after that

than before and of course we didnt take them for a long time ) credot card

offers and such........

But had we not done it then.......... I'd basically be hurting financially- a

lot more than we were before he left................ So, if you think you gotta

do it, do it............ its the biggest relief ......... and just as my being

on welfare was embarrassing- so was the bankruptcy for me for a while there- but

not for long..........

My nerves were sooooooooooooo much more stable after having gone through

it............

Do you know how many bankruptcies go on today? LOL, many many many------------

and now you can even do them online........

Hugssssssssssss and do what you must.........and don't worry about what others

think/say/ or do.............. It is like being given a second chance........

Hugs, TJ

God Bless And Hugs- Love Moon

Re: " Soup line " rant

In a message dated 4/9/2004 11:54:14 PM Eastern Daylight Time,

c-clark05@... writes:

> 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'?

I have insurance. Bill had brain cancer. I was the one who *had* a job five

years ago. So my insurance paid 90% of thousand of doctors. I got six + inches

of bill here which I can do nothing with. Bankrupsy here I come. According to

the system I have no problems. I became bitter toward the end because the

rent, medical insurance, utitlities, perscription, medicare premium, doctor

visit,

taxi to doctor, bleed me dry. To that add four hospitalizations. In the end I

can barely bury Bill. Not that I am so poor, I had no resources due to non

stop medical bill for he last ten years. In the end, my doctors waited until

Bill was dead before helping me the following Monday. I now know I should have

gone to my representative. Or screamed louder. I am not sure this is helpful

info.

April 12, 2004