RE: bad news (long)

[Guest guest]

I sure wish I had answers for you Louise, but all I have are prayers. I'm

sorry, I hope that's enough for now -- better than nothing, right? Hang in

there, I'm praying something will turn up for you.

Love Lana

[Guest guest]

Louise,

I read your post and wanted to strangle something. I feel so bad for you

that you have to go through this. My oldest daughter is going through a

divorce and is going through some of the same " crap " . Only in her case, her

husband is claiming that he is disabled from some sort of " lung disease " , but

the doctors can't detect anything wrong, but he's just sure there is

something wrong. So he can't help her out with the kids or money or

anything. She has three kids, HEDS, a bad back from an accident in which she

fractured a vertebre, a bone spur in her ankle which has grown back, in

addition to the regular HEDS problems. The only thing I can suggest is to

write up a list of problems and their date of occurence. Also list ANY

doctor that did treat anything. Get a copy of the diagnosis of HEDS form

your doctor and an explanation of symptoms, how it can affect a person, etc..

In other words, write down ANYTHING that relates to your HEDS, and try to

get verification of anything you can. Getting your present doctor to testify

along with any friends who have witnessed your problems should help. I

worked for attorneys at one point in my life, so I know the value of

documentation and proof. Those may be the only ways you can provide proof.

These are only my suggestions. But I would think your attorney should be

able to think of some ways to support your case. If worse comes to worse,

maybe those of us who live anywhere nearby can come when it goes to court and

let the court see what we all have to go through and the braces we have,

etc.. I'm sure your ex really doesn't want to have to face a crowd of angry

EDSers. Hope there is something here that might help. If not, at least know

I am thinking of you and am willing to be a shoulder to cry on. Remember,

I'm not that far away (only about 3 hours). I can e-mail you privately with

my phone number if you would like to call.

Keep your chin up.

{{{{{{{{{{{{{ Hugs }}}}}}}}}}}}}

Copeland, HEDS

[Guest guest]

Hi Louise,

I am sorry that you are having such a hard time of it. Just take a deep

breath and know that all processes are slow ones and you have some time to

play with here.

Why not get everything you can and submit it to the lawyer? Get those

letters from friends, who can sign an affidavit that you have been ill and

indicate specific incidents with time-frames.

Get in touch with all who have treated you, alternative or otherwise, and

forward all records. Even an acupuncturist has to legally maintain charts

and records, get copies and send them tot he lawyer.

See someone, anyone and even if they are full of % & *#, as long as they

indicate that you have EDS, they have done their job for you. Go and see

Dr. Katz and just get a letter or statement saying that you have EDS and go

from there. You can not get him to give you a letter stating that you will

go downhill, but he can speak in general terms of EDS which is all the

lawyer can expect and demand. Even in a situation where there is a cancer

diagnosis, no doctor can describe a concrete outcome, the same applies with

EDS.

Progression of this is individual as you know, so there isn't anything

concrete that will say that EDS will progress in a certain way for you, that

sort of thing, but there is general literature out there which can help. I

think I have given you much of what I have.

Jill

[Guest guest]

Re: bad news (long)

> maybe I could come all the way from Albuquerque and meet all of

> you...seriously, I have a daughter who lives in Milwaukee that is begging

me

> to come and visit her.

COME COME COME!!!! To Milwaukee! I live just north of Milwaukee, Doris.

Email me privately with where she lives! You can come stay with me for a

couple of days if you're not allergic to cats. We could drive down to see

Louise!

Bonnie

[Guest guest]

I don't know if this will help but I see Dr. Katz at Rush - St Lukes and he

seems to be quite helpful. I dont know if he has an extensive knowledge of EDS,

but he did know quite a bit and was willing to learn more for me. He is a

rheumatologist in Chicago.

Kristi

bad news (long)

Hello, my friends:

I keep waiting until I stop crying to write this, but apparently that isn't

going to happen any time soon. I've been crying for hours and hours since

yesterday. My throat is raw from screaming into a pillow.

Perhaps I should explain.

Some of you know that I was diagnosed with HEDS last year, and that my

husband moved out only 5 months later. During the last months he lived here,

he told me on a daily basis how miserable he'd been with me, even since we'd

moved in together in 1992. Total shock to me --all that time he'd kept

saying everything was fine. Now all of a sudden I was the monster who'd made

his life miserable and everything was all my fault.

My response to this (as well as my diagnosis) was to write and produce Scent

of a Burnt Rose (songs for people with chronic illness). I figured if I was

already writing the songs, perhaps others might find them useful as well.

That was my first batch of " lemonade " .

Then over the course of this past year that we've been separated, we began

mediation towards divorce. When it became clear that I'd have to come up

with a bunch more money to make up for a reduction in my income from my

husband (who incidentally is a robotics professor with a doctorate from

MIT), I put out lots and lots of publicity for my freelance work: teaching

voice, workshops in sound healing for healers, writing original songs for

special family events, and most recently a song circle to support people

around the issues of Sept 11. This is the way I made lemonade of my upcoming

divorce.

Unfortunately, September 11 has wreaked havoc with my freelance business,

just as it has for many businesses across the country. A weekend workshop

that I'd arranged to teach in Wisconsin just got postponed yesterday, even

though I was really counting on that money to get me through the month. Big

bad news. But ...not as bad as what happened later that afternoon....

Apparently now, my husband's lawyer has decided to play hardball. She is

planning to claim that I'm just lying when I say I've been sick. That I'm

just " accident-prone " , that I don't really have any serious disease, and I'm

just out for his money. Apart from the shock at feeling so attacked, the

burden of proof is on me to show that EDS has had a serious impact on my

life so far, and is likely to do so in the future. I'm not asking for

permanent alimony. All I'm fighting for is for the right to *appeal* for an

extension of my support three years from now. But that's all it took for his

lawyer to declare war.

So.

Here's the practical questions that perhaps you folks might be able to

answer (yeh, I could also just use some emotional support...):

Given that for 13 of the 20 years when I've had my most serious symptoms, I

had no health insurance and therefore no formal medical records, how do I

prove my case? I haven't kept records of most of the people I've seen for

treatment, so I don't know how I'd track them down. What would you suggest?

How rigorous are they likely to require me to be? My lawyer isn't giving me

a clear answer on this.

Would an anectodal list of symptoms stand up in court, or would that fall

apart if they decide to claim I'm lying?

My current GP is willing to back me up but she's no EDS specialist. Is there

anyone within reach of Chicago who I could talk to, and get a reasonable

assessment of my prognosis? I have yet to find any specialist here in

Chicago who wasn't full of & *^%, so I can't call on anyone I've seen so far,

other than my GP, or physical therapist.

I've seen acupuncturists, and an osteopath --are they taken seriously in

court?

Is it worth anything *legally* for me to gather letters from friends who

remember I was on a cane on such and such a date? Is it worth my time to

hunt that down, at a time when I really need to look for a job to get me

through even the next month?

Is there any way I can swear to my medical history and have it hold up in

court?

Many of these episodes didn't require seeing a physician, because the

treatment was obvious and I didn't have health insurance. If it was spasms I

got massage and acupuncture. If it was injuries I did the standard

compression and elevation, etc. Probably a number of those were actually

subluxations, but I didn't know, because I didn't get diagnosed til last

year. It never occurred to me that my joints might actually be coming

apart --they just HURT.

I haven't had serious enough EDS problems to require surgery, and of course

all X-rays or MRI's told nothing. So I don't have those kind of records to

back up my case. Last year, my shoulder subluxed and was stuck that way for

four months, but the specialists I've seen would only say that I *claim*

that it was subluxed, with the implication that I was exaggerating. See what

I mean about how useless they were?

as you can see I am in need of whatever advice you can offer

hugs to y'all

Louise

[Guest guest]

wow --where is this hospital? What's his full name?

Louise

> Re: bad news (long)

>

>

> I don't know if this will help but I see Dr. Katz at Rush - St

> Lukes and he seems to be quite helpful. I dont know if he has an

> extensive knowledge of EDS, but he did know quite a bit and was

> willing to learn more for me. He is a rheumatologist in Chicago.

> Kristi

[Guest guest]

Louise,

I gave you Dr. Kat's info some time ago, please let me know if you need it

again.

Jill

wow --where is this hospital? What's his full name?

Louise

[Guest guest]

Louise,

I'll just throw some thoughts together and you can mine them for any

gold that may be there.

Start a diary. Each day, write how you feel, what hurts, how badly, what

you did (or had done) to settle it, any medications you take, when and

why you took them, whether or not they helped (sometimes they don't).

Also list any incidents during the day. Something like " x subluxated at

<time> today, but went back in without manual intervention " or " y

dislocated at <time>, but I (or a friend who did it for you) was able to

reduce the dislocation in z minutes; I am still sore, but the joint has

not dislocated again as of <current time> " . Details and use proper

medical terminology. And don't gloss over things. If you had trouble

getting out of bed this morning, say so and describe why. Unless it was

a hangover. I consider that self inflicted.

Are there any EDSers who live near you? Moral support would help. Even

better if they are willing to give evidence on EDS and how it affects

you in your divorce hearing.

Sit down and work out approximately when you had the various injuries or

incidences of medical problems. I'm not putting this very well, but you

probably know what I mean. Gather proof where you can. Letters from the

practitioners who treated you would be good. Don't bother contacting

that one doctor about your shoulder. He sounds like a complete waste of

space.

Get the doctor who diagnosed you to do you a detailed letter of how and

why you were diagnosed (what was your Beighton score?), what joints are

affected, how severely you are affected and a guess at the long term

implications. Make sure they stress the negative rather than the

positive. They usually like to put a nice gloss on things (well, you

never know, it may not happen, etc.). In my experience, the " gloss " is

generally wrong and things get worse than they say. X-rays and MRIs will

not help unless you have developed osteoarthritis. I hope you don't end

up with OA, but be aware that you may well do and it will be hard to

deal with. I was diagnosed with OA at 32 and had it some years before

then. (I'm allergic to bad news so I ignored it until I couldn't stand

it anymore.) If any of your joints are particularly loose, have

this/these mentioned in the report. Loose joints are more prone to

injury.

Now for some really good ammunition. Gather everything you can on EDS.

Get Barb to order you copies of the Ehlers-Danlos Support Group

documentation on this side of the pond*. http://www.ehlers-danlos.org/

We aren't set up to take foreign currency, so Barb (Uggen-) does a

mass order every so often. The US site is good, too.

http://www.ednf.org/ If you print things down, make sure you know where

they came from (web addresses). All ammunition you have should come from

reliable sources and you may need to prove that. If you aren't sure

about a web site and the data on it, ask here and we will investigate.

Drown them in information about EDS in general and HEDS in particular.

(* If Barb is unable to, let me know and I will do the order from this

end and then send it on. I need to replace much of the information

anyway as my copies appear to have walked.)

As you pull the information together from the various sources, file them

so that you can easily reference them later. You will need to send the

originals of reports from doctors and what have you, but KEEP A COPY in

your files. Copies of web materials are easier. Print two copies, one

for you and one for them. Then, when they ask for proof, give it to

them. Give it ALL to them. Preferably in a very big heavy box. <snigger>

Talk to your solicitor or lawyer. He or she will be able to suggest

other things that will help. Do you have Citizen's Advice Bureaux or an

equivalent in America? These are small offices staffed by volunteers who

know everything from debt and benefits to wills and divorces. And in the

unlikely event that they don't know something, they know where to find

the information. Better still, they are free. If you have money to say

" thank you " , that is great because that means that they can continue to

fund their work. And if you don't, a simple " thank you very much " lets

them know that they are doing a good job. In my case, I could only give

them the latter. (I was appealing my benefits decision, and they were

WONDERFUL.)

Is there a teaching hospital or medical school near you? If so, see if

you can be given access to their library to gather more information on

EDS from medical journals and what have you. For some reason, the legal

field prefer information in technical medical jargon rather than plain

English that most of us prefer. Then they have to hire someone to

translate it into plain English so they can understand what they are

reading. Talking to some of the rheumatology doctors about it may be

possible without having to pay for it. Some doctors are happy to do this

and some are not, but it doesn't hurt to ask. At worst, they will say

" no " . While that may disappointing, if you don't ask, you will never

know.

I can't think of anything else at the moment, but this ought to be

enough to keep you occupied for some time. Good luck!

Also on a limited income due to being on long term disability.

--

Fuller

Winchester, England

HEDS (VEDS overlay), FMS, OA, IBS, lumbar scoliosis, tinnitus, some hearing

loss, stomach problems, chronic depression, multiple allergies, asthma....

Please excuse any typos or odd phrases. I am talking to the Dragon.

[Guest guest]

Dear :

This is fantastic advice --thanks so much!

Louise

[Guest guest]

yes, please

It's probably deep in the jungle of the CEDA emails I've been accumulating.

Louise

> Re: bad news (long)

>

>

> Louise,

>

> I gave you Dr. Kat's info some time ago, please let me know if you need it

> again.

>

> Jill

>

>

>

> wow --where is this hospital? What's his full name?

> Louise

>

>

>

>

>

>