Re: Hi...I'm new here but have so much to reply to!!!

[Guest guest]

I was accepted this past Friday for Disability as well as SSI. It went pretty quick compared to so many othe's I have talked to..All in all I originally applied last Dec 15, was declined one time then suddenly wham, I was accepted which is nice. Cobra was killing me so now I have Medicaid till Medicare kicks in as well as back money from jan till now. I was lucky to collect unemployment cause I worked for a company who hired disabld, go figure they would fire me!...Money has been tight, even had to go bankrupt but you do what you have to do...SO keep the faith and as so many here have told me, take it one day at a time and roll with the punches...

Be Well

Anne

[Guest guest]

Hi & Welcome to the group! I'm sorry that you have this dreaded disease but glad that you found us and hopefully you can get some answers to your questions. I've had RA almost my whole life, I live in NJ where lymes disease is prevelant and have been tested many many times for it, but I do not have it. The way my symptoms were when I was diagnosed at 13 they figure I was probably born with JRA. I have 2 sons and was in remission while pregnant with both, after my second son the smptoms came back worse than ever before. I have since been diagnosed with a bunch of other diseases like you said, severe spinal OA, fibromyalgia, reynauds, carpal tunnel, tmj, & costochondritis/pleurisy. Most of them are secondary to RA is what my rheumy tells me. I have been on many many meds to try to conquer this, none of them have but some have helped. Right now I am currently on methotrexate injections, folic acid, bextra & ultracet and not doing to bad. The methotrexate has been the only med to help since aspirin, but I am in constant pain all the time also. The pain meds take the edge off I guess I have just learned to live with it most of the time. I know I'm really bad when I can't take the pain anymore. I have been fortunate that I have been able to continue working full time, that is because I work for family in a family run business & they are very understanding as to me coming in late or taking off for dr appt or illness, but even then with all the dr appts and prescriptions it does cause a financial hardship. I feel sometimes that I am on a first name basis with most of my creditors because I have spoken with them so often, but I mean to keep my house if not anything else!LOL The hardest thing I have found with this disease is that you don't look like there is anything wrong with you so when you complain about the pain & fatigue people-including my husband of 20 years- look at you like your lying and just want attention. That is why I have joined this group for the support of others in the same situation who have been there before & know what I'm going through and I hope that you find the same thing here. Good Luck & God Bless, Barbara

naanoseh <naanoseh@...> wrote: Oh my gosh! Where to start???!!! I have just been reading some previous posts and I don't know why I visit here sooner!! I have had RA for the past 11 years...I noticed symptoms right before I gave birth to twins (who will turn 11 yrs. old next month). The most curious thing I have noticed from all the previous posts is that MOST OF US HAVE MORE THAN ONE ILLNESS. I believe that my arthritis started out as LYMES DISEASE...but I also had a mild case of psorisis too and from reading past messages someone else was told that their RA stemmed from this....so maybe that had something to do with it (???). I didn't know anything about LYMES DISEASE until 4 years into my symptoms and not being diagnosed. I was talking to my brother (who I used to live with in Oklahoma) and he was telling me about his bout with Lymes disease and all of his symptoms were identical to mine. They were arthritis like symptoms but also included fatigue and itching...also if the surface of the skin was scratched (even slightly) it would make a red welt appear. In fact, when my brother went to the doctor, the way the doctor tested to see if my brother had Lymes disease was by scratching my brother's arm with his fingernail...in a few minutes the scratch welted up and became red. My brother was treated right away with the antibiotic Doxicycline and the illness went away and he was fine. But I went 4 years without being treated...I would simply take ibuprofen to ease my symptoms. After learning this info from my brother I was able to convince a doctor to prescribe me Doxicycline and my symptoms were non-existent, but unfortunately he only gave me a weeks supply and according to my brother he was required to take it for 30 days straight. I wasn't able to get any other doctor to give me anymore. I think this mutated my Lymes disease and caused me to develop RA...but I could be wrong. A person can have Lymes disease for years and not know it becuz it can be dormant, but when your body becomes fatigued or your immune system is over worked (like during a pregnancy) then the disease becomes active and your symptoms show up. DOES THIS SOUND FAMILIAR TO ANYONE? I live in AZ and Lymes disease isn't common here due to the arrid climate but if you live back East or where there is alot of vegetation then you could have contracted this disease and not even know it. My brother is unaware how he contracted it, but he did. Someone posted a question about itchiness and burning...maybe this is related? Gosh...I have so much to reply to...um...I was told by my rheumatologist that it would not be good for me to have another pregnancy...and that was years ago. I haven't become pregnant but becuz I have wanted more children I didn't end up going on the Methotrexate. The side affects were too risky and the waiver I was required to sign stated that even if I take the drug theres no guarantee that it will actually help me. So I decided it wouldn't be worth the chance of not being able to have children...someone else previously posted that they had a hysterectomy due to damage done by Methotrexate. Although I have much more to say about this illness and how it has drastically hindered my life and those around me I would like to end this post with a few questions:HOW DOES EVERYONE HERE COPE FINANCIALLY? HAS THIS DISEASE KEPT ANYONE FROM WORKING? HAS ANYONE HERE QUALIFIED FOR DISABILITY BASED ON RA? DOES ANYONE HERE HAVE RA ONLY AND NO OTHER ILLNESS? AND LASTLY WHAT DO YOU ALL THINK ABOUT THE NOTION THAT A VEGETARIAN DIET WILL SIGNIFICANTLY IMPROVE OUR PAIN AND SYMPTOMS?I'm so glad to be here!! I understand and experience constant pain...REAL PAIN that just won't stop or go away. Even with taking a buncha painkillers it's still there!!! It's enuff to make a person suicidal sometimes...I can relate to the post about feeling like a burden to everyone around you. When my pain is unbearable it takes so much mental concentration to deal with it that everything else is a distraction...and that's not good when you have kids. I wish I could be the healthy, active mother my twins deserve. Someone said that sometimes all they're able to do is sleep....I heard that!! I used to be an athlete and now I can't even manage to hold a job. Sometimes I have to hop on one foot to the bathroom cuz my other foot is so stiff. I can't dress myself...I can't brush my hair..simple things that I used to take for granted. Life with RA is so hard and I'm so glad I found people who know what I'm talking about.

[Guest guest]

you wrote:

>>>The hardest thing I have found with this disease is that you don't

look like there is anything wrong with you so when you complain about

the pain & fatigue people-including my husband of 20 years- look at

you like your lying and just want attention.>>>

YES!! YES!! YES!! When people would ask me at one of my previous

jobs what was wrong with me I would make the mistake of telling them

I have arthritis. Most wouldn't believe me and even the ones who did

would look me up and down and ask how that kept me from coming to

work. They find it hard to believe that I wasn't able to walk...or

both of my wrists were frozen so I couldn't use my hands at all. I

was young and healthy looking. It's embarrassing. So now I've

learned to make up little white lies about my illness. Now when

people ask me what's wrong with my foot or hand or whatever I just

tell them I hurt it doing something or I pulled a muscle or

something...anything to keep from telling them I have arthritis. At

my last job when I would have to call in I would never tell them the

real reason. I would say it was car trouble or the flu or whatever.

I hated that I had to lie but at least I was treated more like just

another normal employee. It was better than being treated like I was

a slacker out to wreck the company's production with my fake

illness. In my experience when you work in the corporate world and

your employer thinks you might have a reoccurring or chronic illness

they freak out. I don't want to be treated with contempt becuz I'm

viewed as a liability or a ball and chain that's gonna bring the

company's production down. That's happened to me before--all my co-

workers were told of my situation and they all treated me like I was

the biggest slacker in the world. If they only knew how badly I want

to work and make my own way. I have been struggling for years to

keep working even through all the crippling pain and immobility. But

I feel so worried at this point becuz this is the worst my condition

has ever been and I'm afraid of how I'm gonna make it financially.

At this point even if I could find that impossible job that would be

flexible enough for me to miss work when I needed to, I would

probably miss so much work that my paychecks wouldn't support me.

I'm so scared right now. And on top of everything I have to burden

my family and my kids. I often have a cranky attitude from the pain,

I'm fatigued and I need help to do things for myself alot.

I feel so worthless and I really think everyone would be better off

if I weren't here cuz I don't really think there's anything I can

contribute to this world. But I'm not suicidal and I don't want

pity...I just want someone to understand what it's like. Nobody in

my family understands what I go thru and it's so hard suffering

alone. Thanks Barbara. I'm so glad to hear from you...you made my

day.

Oh my gosh! Where to

start???!!! I have just been reading some

> previous posts and I don't know why I visit here sooner!!

>

> I have had RA for the past 11 years...I noticed symptoms right

before

> I gave birth to twins (who will turn 11 yrs. old next month). The

> most curious thing I have noticed from all the previous posts is

that

> MOST OF US HAVE MORE THAN ONE ILLNESS. I believe that my arthritis

> started out as LYMES DISEASE...but I also had a mild case of

psorisis

> too and from reading past messages someone else was told that their

> RA stemmed from this....so maybe that had something to do with it

> (???).

> I didn't know anything about LYMES DISEASE until 4 years into my

> symptoms and not being diagnosed. I was talking to my brother (who

I

> used to live with in Oklahoma) and he was telling me about his bout

> with Lymes disease and all of his symptoms were identical to mine.

> They were arthritis like symptoms but also included fatigue and

> itching...also if the surface of the skin was scratched (even

> slightly) it would make a red welt appear. In fact, when my

brother

> went to the doctor, the way the doctor tested to see if my brother

> had Lymes disease was by scratching my brother's arm with his

> fingernail...in a few minutes the scratch welted up and became

red.

> My brother was treated right away with the antibiotic Doxicycline

and

> the illness went away and he was fine. But I went 4 years without

> being treated...I would simply take ibuprofen to ease my symptoms.

> After learning this info from my brother I was able to convince a

> doctor to prescribe me Doxicycline and my symptoms were non-

existent,

> but unfortunately he only gave me a weeks supply and according to

my

> brother he was required to take it for 30 days straight. I wasn't

> able to get any other doctor to give me anymore. I think this

> mutated my Lymes disease and caused me to develop RA...but I could

be

> wrong. A person can have Lymes disease for years and not know it

> becuz it can be dormant, but when your body becomes fatigued or

your

> immune system is over worked (like during a pregnancy) then the

> disease becomes active and your symptoms show up.

> DOES THIS SOUND FAMILIAR TO ANYONE? I live in AZ and Lymes disease

> isn't common here due to the arrid climate but if you live back

East

> or where there is alot of vegetation then you could have contracted

> this disease and not even know it. My brother is unaware how he

> contracted it, but he did. Someone posted a question about

itchiness

> and burning...maybe this is related?

>

> Gosh...I have so much to reply to...um...I was told by my

> rheumatologist that it would not be good for me to have another

> pregnancy...and that was years ago. I haven't become pregnant but

> becuz I have wanted more children I didn't end up going on the

> Methotrexate. The side affects were too risky and the waiver I was

> required to sign stated that even if I take the drug theres no

> guarantee that it will actually help me. So I decided it wouldn't

be

> worth the chance of not being able to have children...someone else

> previously posted that they had a hysterectomy due to damage done

by

> Methotrexate.

>

> Although I have much more to say about this illness and how it has

> drastically hindered my life and those around me I would like to

end

> this post with a few questions:

>

> HOW DOES EVERYONE HERE COPE FINANCIALLY? HAS THIS DISEASE KEPT

> ANYONE FROM WORKING? HAS ANYONE HERE QUALIFIED FOR DISABILITY

BASED

> ON RA? DOES ANYONE HERE HAVE RA ONLY AND NO OTHER ILLNESS? AND

> LASTLY WHAT DO YOU ALL THINK ABOUT THE NOTION THAT A VEGETARIAN

DIET

> WILL SIGNIFICANTLY IMPROVE OUR PAIN AND SYMPTOMS?

>

> I'm so glad to be here!! I understand and experience constant

> pain...REAL PAIN that just won't stop or go away. Even with taking

a

> buncha painkillers it's still there!!! It's enuff to make a person

> suicidal sometimes...I can relate to the post about feeling like a

> burden to everyone around you. When my pain is unbearable it takes

> so much mental concentration to deal with it that everything else

is

> a distraction...and that's not good when you have kids. I wish I

> could be the healthy, active mother my twins deserve. Someone said

> that sometimes all they're able to do is sleep....I heard that!! I

> used to be an athlete and now I can't even manage to hold a job.

> Sometimes I have to hop on one foot to the bathroom cuz my other

foot

> is so stiff. I can't dress myself...I can't brush my hair..simple

> things that I used to take for granted. Life with RA is so hard

and

> I'm so glad I found people who know what I'm talking about.

>

>

>

>

[Guest guest]

what do you have to do to try to get disability,

because I am unable to work

--- asiegel1114@... wrote:

> I was accepted this past Friday for Disability as

> well as SSI. It went pretty

> quick compared to so many othe's I have talked

> to..All in all I originally

> applied last Dec 15, was declined one time then

> suddenly wham, I was accepted

> which is nice. Cobra was killing me so now I have

> Medicaid till Medicare

> kicks in as well as back money from jan till now. I

> was lucky to collect

> unemployment cause I worked for a company who hired

> disabld, go figure they

> would fire me!...Money has been tight, even had to

> go bankrupt but you do

> what you have to do...SO keep the faith and as so

> many here have told me,

> take it one day at a time and roll with the

> punches...

>

> Be Well

> Anne

>

__________________________________________________