Bummed out

[Guest guest]

" Not fit for work, but can't recommend disability. " What kind of BS is

that? I'm so sorry that you are having to go through this, on top of being

sick. I have a friend who was disabled for years; couldn't even go to

church many Sundays; was finally diagnosed with Crohn's disease. Before the

diagnosis, she was just as sick & disabled! Thank goodness her doctor

documented her inability to function in a work setting, even without a

label. What about them using a " working diagnosis " of NS; I think that's

what Aisha's doctor did.

Toni, don't ever apologize for ranting & venting; that's what we are here

for. Hey, is Brisbane anywhere near Melbourne? One of the patients in my

midwifery practice is from Melbourne and had a baby a few months ago. She

was our waterbirth pioneer; the first underwater birth after working toward

it for several years. We have since had 7 women deliver underwater; all

have loved it. This week my midwifery partners gave a presentation for

staff from several hospitals in the area about the waterbirth program, and

two of the moms came with their babies & described the experience. It was

bittersweet for me; I worked for years to get waterbirth approved, then went

on disability just before the first birth. As I watched the presentation,

with photos & videos, I felt a little like Moses, not getting to cross the

Jordan into the Promised Land. I guess that sounds silly, but I was so

excited about it & feel like that's something else suckoidosis has taken

from me.

Well, there's my pity party for the day! Don't give up; try the " working

diagnosis " idea on your docs. Can't hurt, might help. Sending a little ray

of sunshine your way. Rose

Bummed out

> Hi and healing thoughts to everyone

>

> First of all, a very happy birthday to k, hope you have a GREAT day

and

> a pain free one. Rose and Tracie, how wonderful to hear your fantastic

> news, I hope you keep on getting better and better.

>

> Welcome to you Debbie as one of our new moderators.

>

> I had my work medical yesterday and I have to say I'm really bummed out by

> it, but not surprised. The Occupational Dr I saw told me straight out

that

> he was not recommending my total and permanent disability so there goes

any

> chance of a little bit of extra income. I went in with a diagnosis of

> fibromyalgia because they still haven't made a diagnosis of NS. But he

> said that I definitely wouldn't get disability on a diagnosis of

> fibromyalgia and he believed there was more going on than that diagnosis

> anyway - catch 22 - AGAIN. But he has just recommended that I continue on

> with the treatment I'm on (which is for NS anyway *wry smile*), and wait

> for further tests and diagnosis. He said, " You definitely aren't fit for

> work, but without a confirmed diagnosis, I can't recommend disability. I

> just can't win. I went in there with a 9 page document outlining

> everything that is happening to me and everything I can not do anymore and

> how it is affecting me and my family. I'm going to take the same document

> to my next rheumy appt and see if I can get another MRI or scan or

biopsy -

> just anything. My dr's won't diagnose NS, I have to wait till August to

> see an immunologist, still waiting on an appt for my neurologist, my

> rheumatologist, who I see again in July, has pretty much given up, and my

> symptoms are worsening. I actually fell over for the first time yesterday

> afternoon. I was sitting on the floor and got up and just could not for

> the life of me get my balance and came crashing to my knees after

stumbling

> all over the place trying desperately to remain standing.

>

> Like all of you, I'm sick of having to justify myself and what I can't do

> anymore, why I sleep all the time, why I can't play lego with my youngest

> son, why I can't kick or practice football with him, why I can't sleep at

> night yet can sleep all day on and off at the drop of a hat (which I hate,

> do people actually believe I enjoy sitting up all night, in the cold, when

> I could be sleeping in a warm bed? Obviously, I don't have any other

> explanation). With comments like, well if you didn't stay up all night,

> you wouldn't sleep all day.....ha!

>

> I would give anything to have my normal sleeping pattern back, but it

> wouldn't make any difference to my energy or fatigue or my pain.

>

> I'm sick of having to beg for tests only to be told they don't think it is

> justified based on the test results, damn the test results, what about

what

> it is doing to me physically, do they think it's all in my head or I'm

just

> the biggest hypochondriac on the face of the planet.

>

> I'm still waiting on social security to decide if I can go an a disability

> pension because I can't work and I took the same paperwork with me to

their

> medical appt as well.

>

> EVERYTHING is a BATTLE and it's really wearing me out.

>

> Anyway, sorry for the vent, but needed to get it off my chest.

>

> Luv to all

> Toni

> Brisbane, OZ

>

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[Guest guest]

Hi and healing thoughts to everyone

First of all, a very happy birthday to k, hope you have a GREAT day and

a pain free one. Rose and Tracie, how wonderful to hear your fantastic

news, I hope you keep on getting better and better.

Welcome to you Debbie as one of our new moderators.

I had my work medical yesterday and I have to say I'm really bummed out by

it, but not surprised. The Occupational Dr I saw told me straight out that

he was not recommending my total and permanent disability so there goes any

chance of a little bit of extra income. I went in with a diagnosis of

fibromyalgia because they still haven't made a diagnosis of NS. But he

said that I definitely wouldn't get disability on a diagnosis of

fibromyalgia and he believed there was more going on than that diagnosis

anyway - catch 22 - AGAIN. But he has just recommended that I continue on

with the treatment I'm on (which is for NS anyway *wry smile*), and wait

for further tests and diagnosis. He said, " You definitely aren't fit for

work, but without a confirmed diagnosis, I can't recommend disability. I

just can't win. I went in there with a 9 page document outlining

everything that is happening to me and everything I can not do anymore and

how it is affecting me and my family. I'm going to take the same document

to my next rheumy appt and see if I can get another MRI or scan or biopsy -

just anything. My dr's won't diagnose NS, I have to wait till August to

see an immunologist, still waiting on an appt for my neurologist, my

rheumatologist, who I see again in July, has pretty much given up, and my

symptoms are worsening. I actually fell over for the first time yesterday

afternoon. I was sitting on the floor and got up and just could not for

the life of me get my balance and came crashing to my knees after stumbling

all over the place trying desperately to remain standing.

Like all of you, I'm sick of having to justify myself and what I can't do

anymore, why I sleep all the time, why I can't play lego with my youngest

son, why I can't kick or practice football with him, why I can't sleep at

night yet can sleep all day on and off at the drop of a hat (which I hate,

do people actually believe I enjoy sitting up all night, in the cold, when

I could be sleeping in a warm bed? Obviously, I don't have any other

explanation). With comments like, well if you didn't stay up all night,

you wouldn't sleep all day.....ha!

I would give anything to have my normal sleeping pattern back, but it

wouldn't make any difference to my energy or fatigue or my pain.

I'm sick of having to beg for tests only to be told they don't think it is

justified based on the test results, damn the test results, what about what

it is doing to me physically, do they think it's all in my head or I'm just

the biggest hypochondriac on the face of the planet.

I'm still waiting on social security to decide if I can go an a disability

pension because I can't work and I took the same paperwork with me to their

medical appt as well.

EVERYTHING is a BATTLE and it's really wearing me out.

Anyway, sorry for the vent, but needed to get it off my chest.

Luv to all

Toni

Brisbane, OZ

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[Guest guest]

Toni,

I can so understand your frustration. The "Occupational MD" is an idiot. One of the biggest challenges of getting the NS diagnosis is that it is at the end of the line, so to speak. When they've ruled out MS, and all the other stuff, they fall back on well-- it must be NS.

Fibromyalgia can be totally debilitating. If you don't have the pain under control, then you aren't going to sleep-- at least what happens is that you don't go into all 4 cycles of sleep, and therefore, you are exhausted during the day.

Toni, have they done a sleep study-- that would show your sleep cycles, and if you aren't getting into a "deep sleep" then that at least gives em a place to start.

The other thing that needs to happen is "Neuropsych Testing". This is tests that show where you've lost the ability to function with short-term memory stuff-- they tell you a story, you tell them what you remember. Then they do counting back from 100 by 7's, and then Question/answer to check for depression (which is caused secondary to lack: of sleep, pain control, sarcoidosis, idiots putting us thru this testing. . .) and then shape-puzzles, eye hand coordination stuff, longer-term memory stuff, etc. It can tell them what part of the brain is being effected by what tests you don't do well on. Mine show that the frontal lobe- executive functioning area is involved. I've lost my short-term memory, problem solving, multi-tasking, common sense stuff. This is why I can't work.

The other tests are blood work- checking for ACE, CRP, CBC, Liver (LFT), DNA testing for bacterias, etc.

Hon, you've got to find a specialist in your area that can help you. The MD's you're dealing with are "old school" and still think sarcoidosis is a benign disease. I know Aisha had given you a couple of names. Maybe you could check the archives and see if you can find the emails from when you first joined.

I apologize, I'd do it for you, but am really struggling right now myself. The Remicade is doing a number on my energy level, and I'm not able to be online daily.

My heart truly goes out ot you, the frustration you shared is a story that we all know first hand. I will tell you that it does get better-- the fight is for your life and livelyhood.

Compassionately,

Tracie