Re: long whine

[Guest guest]

<PRE>hey stphanie, good luck with your disability. i was 41 when i applied. i

was

denied the first time and i hired a ss lawyer that took fee if they

collected. he wrote 2 letters and i was approved. i was so shocked i applied

in dec and by the following Nov i was getting checks. i never had to drive

downtown chicago. i did all my stuff over the phone and by mail. they never

sent me to any dr's or anything. here i was prepared for years of waiting and

i was accepted before i even knew it. your right it does suck!!! people

don't understand. they feel like you said we are too lazy to work. but it was

very depressing to be 42 and retired. i am so isolated now. unfortunatly for

me i am going to have to get a part time job to survive or kick my 19 yr old

son out (still in high school) sell my house and go into assisted living or

something. the people there are mostly 20-30 years older than me, so that's

really not what i want either. they are very frustrating decisions to make.

i'm glad you have your parents to help you. mine are in florida and my 70

year old father is working part time to help me out. i've just been cancelled

from the com ed budget plan because the payments are late. well i explain i

get paid the 3th wednesday of the month can i change the due date?? nope too

bad. so i am just gonna try and get a job and survive here and be

independent as long as i can. at least until my son is stable enough to be on

his own. then i will have more decisions make, (rent out his room, sell the

house, go to my parents in florida, assisted livong.) again good luck with

your disability. if they deny you, get an atty right away. they took his fee

right out of my social security back pay. kathy in il

[Guest guest]

Yes, it is possible for you to get disability in your 30s, . I am

really sorry that things are this

bad for you.

Are you on any DMARDs right now? Your disease doesn't sound like it is under

control at all.

[ ] long whine

> I am one the lurkers around here, and have been enduring a kind of

> living hell the last 3 mos or so. Not as bad as some of you, but very

> depressing all the same.

> Today I threw in the towel and applied for disability. I will of

> course be denied, I am after all 34 years old, with no severe

> deformities, thus I am lazy and don't wanna work anymore. ( At least

> that was the unspoken implication. ) I have to rely on my parents to

> prepare my meals, I can't open boxes, lift packages or even open

> them, I need help to get dressed, comb my hair and last night I

> needed my mother to help me out of the tub. My ankles, wrists, and

> fingers are swollen and painful all the time now. Nothing seems to

> provide much relief. the pain pills just leave me in a fog.

> I am so depressed I can't begin to describe it. This is not the life

> I ordered, and I want a refund!! ( lol! like that's gonna happen).

> And I know I'm gonna have to fight to get disbility. Youngish people

> just don't get disability, if they did who pay taxes??

> Anyway, I do have some deformities in my fingers but they are not

> severe, has anybody had any luck obtaining disabilty in their 30's

> without severe deformities? I don't want to go on SSDI, I really

> would rather work. I want to live on my own, take care of myself, I

> want my life back. ( now for the whine...) I don't wanna do this, it

> isn't fair and this sucks!

> Thanks for listening. Any advice from someone who has been there

> before me?

[Guest guest]

and all,

I am flaring very badly now, so yes things *seem* much worse than

they are. My usual medication regimen is 25mg MTX 1x wk, 10mg Pred

1x day, Ultram 50 mg ( take 2 4x day ) and 2mg folic acid 1x day.

Currently the pred is doubled 10 mg 2x day and 1 Vicodin every 6

hrs. The pred is helping quite a bit at least today so I'll likely

skip the Vicodin for today... It is a nice day I hate to miss it.

I'm also taking part in a study testing a once a week injectable

DMARD ( don't know what it is...) that was/is helping. Whatever the

stuff is, it really needs to be twice a week not once a week. My CRP

was under 5 for the first time in years, and my sed rate was at 22. (

For my age group the sed rate should be no more than 20 and the CRP

<.5 so the mystery drug really was helping ) It just seems so damn

unfair at times is all. To have to fight this disease and the

perception that I am too lazy to work just seems like too much.

On the bright side, my Dr's assistant is going to collect the data

and paperwork and will fill in the forms with me next week, ( or when

I receive the paperwork from SSA ) so at least I don't have to write

it all out by myself. My parents are very helpful, preparing meals,

driving me to appts, and helping in sooooo many ways. Hauling my

creaky butt out of the tub being just one example. ( Bless my father

for balancing my checkbook, and making sure my bills get paid, I

think he makes sure I have *some* money to play with as well. ) I

am very blessed and I know it. It sounds so ungrateful to say I don't

want the help. Especially when there are people facing issues that

are good deal more serious than mine. It's just that is a crappy

disease, the treatments aren't always much better than the disease, (

Prednisone anyone??) and often I feel like my really excellent Rhuemy

is casting about for the right combination of drugs, ( times like

this the fact that there are so many choices isn't exactly good news

either.) And being this lucky can really suck. And I loathe whiners,

(she whines)

I will feel better this flare will pass, and I will get on with

what passes for my life, but having to retire at 34 is a hard thing

to swallow.

I can relate to the group home choice. I used to work in one, A

group home for high functioning adults is your best bet. I worked in

several and they were a blast! Most of the people had cars, jobs, we

had one gentleman ( a parapalegic) get a DUI in his motorized

wheelchair coming home after the bars closed! Top that! It was a

great place to work and wonderful people to work with. The average

age was late 30's! If this is a choice you need to make, start

looking now. There are some really excellent homes, and they have

the waiting lists to prove it.

> Yes, it is possible for you to get disability in your 30s,

. I am really sorry that things are this

> bad for you.

>

> Are you on any DMARDs right now? Your disease doesn't sound like it

is under control at all.

>

>

[Guest guest]

,

Sorry you are having such a rough time. I am also very frustrated by not

being able to do simple everyday things anymore. I have not been diagnosed

yet, going in on Feb 5, but I can definitely relate to your frustrations.

Hang in there and whine anytime. I've done my share and probably will some

more.

Betsy in CA

[ ] long whine

I am one the lurkers around here, and have been enduring a kind of

living hell the last 3 mos or so. Not as bad as some of you, but very

depressing all the same.

Today I threw in the towel and applied for disability. I will of

course be denied, I am after all 34 years old, with no severe

deformities, thus I am lazy and don't wanna work anymore. ( At least

that was the unspoken implication. ) I have to rely on my parents to

prepare my meals, I can't open boxes, lift packages or even open

them, I need help to get dressed, comb my hair and last night I

needed my mother to help me out of the tub. My ankles, wrists, and

fingers are swollen and painful all the time now. Nothing seems to

provide much relief. the pain pills just leave me in a fog.

I am so depressed I can't begin to describe it. This is not the life

I ordered, and I want a refund!! ( lol! like that's gonna happen).

And I know I'm gonna have to fight to get disbility. Youngish people

just don't get disability, if they did who pay taxes??

Anyway, I do have some deformities in my fingers but they are not

severe, has anybody had any luck obtaining disabilty in their 30's

without severe deformities? I don't want to go on SSDI, I really

would rather work. I want to live on my own, take care of myself, I

want my life back. ( now for the whine...) I don't wanna do this, it

isn't fair and this sucks!

Thanks for listening. Any advice from someone who has been there

before me?

[Guest guest]

(((((((((((((((((())))))))))))))))))

You poor dear. I think we've all been in the same frame of mind, at

least to a certain degree. I know this isn't the life I had in mind.

My name's Carol and I'm 37. I'm still able to do most things for

myself, but only by enduring a lot of pain. I haven't applied for

disability, but only because I can work part time for our company, at

home. The hours are flexible enough that I'm able to still do it. I

know how blessed I am to have such flexibility. I also go to school

part-time, but by the end of a three hour class I want to scream. They

don't make the chairs in class for people with RA.

Anyway, I don't have any experience with disability, but I just wanted

you to know you're not alone. I still haven't come to terms fully with

having RA.

Love and hugs,

Carol

[ ] long whine

I am one the lurkers around here, and have been enduring a kind of

living hell the last 3 mos or so. Not as bad as some of you, but very

depressing all the same.

Today I threw in the towel and applied for disability. I will of

course be denied, I am after all 34 years old, with no severe

deformities, thus I am lazy and don't wanna work anymore. ( At least

that was the unspoken implication. ) I have to rely on my parents to

prepare my meals, I can't open boxes, lift packages or even open

them, I need help to get dressed, comb my hair and last night I

needed my mother to help me out of the tub. My ankles, wrists, and

fingers are swollen and painful all the time now. Nothing seems to

provide much relief. the pain pills just leave me in a fog.

I am so depressed I can't begin to describe it. This is not the life

I ordered, and I want a refund!! ( lol! like that's gonna happen).

And I know I'm gonna have to fight to get disbility. Youngish people

just don't get disability, if they did who pay taxes??

Anyway, I do have some deformities in my fingers but they are not

severe, has anybody had any luck obtaining disabilty in their 30's

without severe deformities? I don't want to go on SSDI, I really

would rather work. I want to live on my own, take care of myself, I

want my life back. ( now for the whine...) I don't wanna do this, it

isn't fair and this sucks!

Thanks for listening. Any advice from someone who has been there

before me?

[Guest guest]

Hi . I¹m sorry you¹re in such pain and have had to apply for

disability.

I was 30 when I applied and I was approved the first time around. But that

was 18 years ago and many things have changed. I did not have any

deformities

when I applied. It was confined to both knees and both ankles. There have

been

other young people that have gotten approved right away, so hopefully you

will

be one of them. I know how it feels to want to be working. I had a good

job

when I became disabled and since my work record wasn¹t very long I don¹t get

much. When I think about my earnings potential, it is depressing. But I

also

have to look at the positive side. My 2 children did not have to go to

daycare.

I wouldn¹t have time to devote to this group.

I¹ve been on the receiving end of the unspoken implications. With invisible

diseases it happens a lot. Until both of my knees were replaced I know

people

didn¹t believe there was anything seriously wrong. I¹ve grown a much

thicker

skin and I don¹t give a rats ass what anyone thinks anymore. You learn not

to

sweat the little things. It¹s funny though because now that some of these

³friends²

are getting older and developing arthritis, they now are starting to get it.

You are very lucky to have a helpful family. Good luck in your getting

disability.

I hope you are approved the first time around. A lot has to do with what

your doctors

reports say, so I hope you have a doctor that will do the proper paperwork.

a

> I am one the lurkers around here, and have been enduring a kind of

> living hell the last 3 mos or so. Not as bad as some of you, but very

> depressing all the same.

> Today I threw in the towel and applied for disability. I will of

> course be denied, I am after all 34 years old, with no severe

> deformities, thus I am lazy and don't wanna work anymore. ( At least

> that was the unspoken implication. ) I have to rely on my parents to

> prepare my meals, I can't open boxes, lift packages or even open

> them, I need help to get dressed, comb my hair and last night I

> needed my mother to help me out of the tub. My ankles, wrists, and

> fingers are swollen and painful all the time now. Nothing seems to

> provide much relief. the pain pills just leave me in a fog.

> I am so depressed I can't begin to describe it. This is not the life

> I ordered, and I want a refund!! ( lol! like that's gonna happen).

> And I know I'm gonna have to fight to get disbility. Youngish people

> just don't get disability, if they did who pay taxes??

> Anyway, I do have some deformities in my fingers but they are not

> severe, has anybody had any luck obtaining disabilty in their 30's

> without severe deformities? I don't want to go on SSDI, I really

> would rather work. I want to live on my own, take care of myself, I

> want my life back. ( now for the whine...) I don't wanna do this, it

> isn't fair and this sucks!

> Thanks for listening. Any advice from someone who has been there

> before me?

>

>

>

>

[Guest guest]

Thanks all,

It means a great deal to realise that I'm not the only one. It

helps more than I can say. Thank you. I get so discouraged.

In regards to the poster asking about ways to ease the financial

crunch, while waiting on SSDI, all I can say is document any missed

days, document why you stop working. It is really hard to say, I do

know that the rules have changed as long as you earn less than $780 a

month you are considered " gainfully " employed. Like anyone can live

on $780 a month! But document the toll this takes on you. Make very

sure your Dr will assist you in documenting any changes in your well

being. ie pay extra attention to the swollen painful joints at every

visit. Do NOT minimize your pain as dicomfort! Good luck to you. I

can really sympathise.

My favorite nurse chewed my butt right proper for not telling them

how bad my pain is, and for NOT telling them how dependent I really

am on other people. The Dr doubled my steroids and changed my pain

medication -- in addition to agreeing to help me fill out the forms

for the state and the social security paper pushers. And he is not

charging me anything to do this!! I am in shock. I am blessed and

yet I feel like a real ass for not wanting to be so " blessed " . This

is the only place I can go and be understood.

> Hi . I¹m sorry you¹re in such pain and have had to apply

for

> disability.

> I was 30 when I applied and I was approved the first time around.

But that

> was 18 years ago and many things have changed. I did not have any

> deformities

> when I applied. It was confined to both knees and both ankles.

There have

> been

> other young people that have gotten approved right away, so

hopefully you

> will

> be one of them. I know how it feels to want to be working. I had

a good

> job

> when I became disabled and since my work record wasn¹t very long I

don¹t get

> much. When I think about my earnings potential, it is depressing.

But I

> also

> have to look at the positive side. My 2 children did not have to

go to

> daycare.

> I wouldn¹t have time to devote to this group.

>

> I¹ve been on the receiving end of the unspoken implications. With

invisible

> diseases it happens a lot. Until both of my knees were replaced I

know

> people

> didn¹t believe there was anything seriously wrong. I¹ve grown a

much

> thicker

> skin and I don¹t give a rats ass what anyone thinks anymore. You

learn not

> to

> sweat the little things. It¹s funny though because now that some

of these

> ³friends²

> are getting older and developing arthritis, they now are starting

to get it.

>

> You are very lucky to have a helpful family. Good luck in your

getting

> disability.

> I hope you are approved the first time around. A lot has to do with

what

> your doctors

> reports say, so I hope you have a doctor that will do the proper

paperwork.

> a

>

[Guest guest]

You have been through the ringer lately! Time and patience (and a little cheese

) to get through until your next visit with the GP.

You have been such a big help to me lately even with everything you are going

through. Bless you for that. Rest and take care of yourself until your return

visit to the doctor. You have definately earned it.

Betsy in the VI

--- In , " phylliscrubaugh " <phylliscrubaugh@...>

wrote:

>

> Hi gang-

>

> I need to whine a minute. I am totally frustrated with the medical profession

right now. I believe that they try, but somehow all of the waiting and stupid

stuff have gotten to me.

>

> I have GERD on top of my other stuff. Wasn't TOO horrible at first- mostly

just uncomfortable and inconvenient. Well, the pain got worse right around the

time that I finally got in after 5 1/2 week wait for my new GP to see me ( and

we all know that you can't see a specialist without one ). She was great- says

she'll get me in to see a Gastroenterologist. Great. So I wait for referral for

2 1/2 weeks and then go see him. He sends me to get an ultrasound ( another week

) OK- not too bad. Wait for results ( another week ). Another appt w/ Gastro-

another 12 days. Says I need surgery for Gall Bladder removal. Sends me to a

Surgeon- another 6 days. OK. Sets up surgery ( another grouping of days- about 5

). Bloodwork/ pre-op workup at hospital 3 days. Surgery done. Still have inner

pain ( and now outer as well from incisions ). Set up Endoscopy ( only 3 days-

pretty good eh? ) Dr says that I have some wierd fungus in my esophagus and

sends it out for culture which will take 48 hours ( NOT! ) A week later, the

nurse calls me and tells me that I have GERD ( Yeah- no sh8t ) and no evidence

of fungus is listed on the sheet of paper that she is holding. OK- Now ya see

it- now ya don't. What am I supposed to do? I ask. Go to your next appt she says

and hangs up. That is next Thursday. ( A week later ).

>

> I am fit to spit. I didn't expect my GP to whip out a cyber surgeon from her

pocket and yank out my gall bladder in the office or instantly cure whatever

issue I have going on in my guts- but sheesh! If you count the weeks- that is

about 13 1/2 weeks since I was actually able to get to this point and I hurt

like 7 hells now. Everything I eat- regardless of what it is or how much- HURTS.

I am diabetic and have to eat several small meals a day. And I am anticipating

all of the lovely bills- GP/Lab/Xray/Path Lab/ Specialist/ Hospital/ Surgeon

bills to begin coming in this week. I can hardly wait.

>

> In the meantime- because I have all of these co-pays, I haven't been able to

pay my Rheumy in full and they don't set you a new appt until you do. I can

hardly blame them in this economy- but I need to know what the last bloodwork is

and get on the Enbrel he wants me on. I had a major flare last week in the

middle of all of this and I broke my hand right after seeing the GP ( don't ask

). Of course, they will not treat you for two things at once, or Medicare won't

pay. So, although I have been in 3 Dr. offices and 3 hospital visits- they

wouldn't look at my hand. The rest of the time I have been knocked out and

recouperating. On Monday- I will go to the GP again and see to my hand. I hope

they fix it by Thursday so I can throttle the snotty nurse at my Gasto's office.

>

> Whew! Thanks for listening- ( typing w/one finger in SC )

>

[Guest guest]

I am so sorry that you are not feeling well and the medical field is playing

chess with you. I am sure that you have read a bit of my similiar situations

with the medical field. Believe it or not I have been known to have authored

several of my own whine sessions. Thank goodness we are not charged per word!

I am sure remembers some of my " whine books " and oh my goodness, I needed

cheese to go with that whine so bad! I am currently battling a bleeding problem

that they don't know where it is coming from. I am suppose to see the

hematologist tomorrow and I am so scared that my blood count may have gone down

again. Then I need to see the GI doc to have another endo to check on an old

ulcer scar that they found in the ICU. And don't forget the Pulmonary guy to

check on the status of my pneumonia and be sure to get the chest x-ray before

that appointment. Golly, I think that that should take care of the unexpected

hospital experience.

Well, right now my daughter and her family (with the 2 grandchildren)are here

for dinner. My husband's birthday is today. So I will try to forget my

schedule in the future and hold everyone and realize how lucky I am that I have

once again fought this battle and I will just take it one day at a time.

Hang in there dear buddy.......it will get back down to a mild roar. Don't

forget that you don't want to go on the Enbrel if there is something brewing in

your body. You want to try to let the Enbrel work to it's best ability. I was

one of the lucky ones and did receive relief from the Enbrel until I developed

pneumonia.

You will be in my thoughts and prayers.

Gentle, tender angel hugs......................

Debs in FL

am I supposed to do? I ask. Go to your next appt she says and hangs up. That is

next Thursday. ( A week later ).

I am fit to spit. I didn't expect my GP to whip out a cyber surgeon from her

pocket and yank out my gall bladder in the office or instantly cure whatever

issue I have going on in my guts- but sheesh! If you count the weeks- that is

about 13 1/2 weeks since I was actually able to get to this point and I hurt

like 7 hells now. Everything I eat- regardless of what it is or how much- HURTS.

I am diabetic and have to eat several small meals a day. And I am anticipating

all of the lovely bills- GP/Lab/Xray/Path Lab/ Specialist/ Hospital/ Surgeon

bills to begin coming in this week. I can hardly wait.

In the meantime- because I have all of these co-pays, I haven't been able to pay

my Rheumy in full and they don't set you a new appt until you do. I can hardly

blame them in this economy- but I need to know what the last bloodwork is and

get on the Enbrel he wants me on. I had a major flare last week in the middle of

all of this and I broke my hand right after seeing the GP ( don't ask ). Of

course, they will not treat you for two things at once, or Medicare won't pay.

So, although I have been in 3 Dr. offices and 3 hospital visits- they wouldn't

look at my hand. The rest of the time I have been knocked out and recouperating.

On Monday- I will go to the GP again and see to my hand. I hope they fix it by

Thursday so I can throttle the snotty nurse at my Gasto's office.

Whew! Thanks for listening- ( typing w/one finger in SC )

[Guest guest]

Thanks Debs-

 

I felt the hug.

 

in SC