Re: Whats the worst about RA? To Penny...

[Guest guest]

Penny, I can't believe I found someone else in my boat. My breathing is a mess!!

I see an allergist and a pulmonary doc, but I know it's related to the RA. I've

had every test conceivable to diagnose a lung problem, but they found nothing.

Even my 'asthma', they decided, is not exactly asthma, but more of an allergy

inside my lungs. And I always knew that. I get so much liquid in my lungs, (and

it's all clear allergy, salty type of liquid) I seriously feel like I'm

drowning, and the people around me think I'm drowning, I scare the hell out of

them!! (and myself sometimes) My ins. was cancelled when my sons father stopped

paying support and the ins premiums, so I can't go to the doc and can't get my

beloved enbrel which will clear up my joints, and my lungs. I've begged anyone I

know for help, and noone will help me. I'm so discouraged, and now with the heat

and humidity, and the air cond. broken in my car, I dont' even want to get out

of bed in the morning. Between the pain, stiffness, not being able to breathe,

coughing, plus all my other complicated issues, I really don't know how I decide

to wake up every day.

> Have you tried any meds that help your lungs besides the normal asthma and

copd meds? I'm so desperate to find something that will help, I'll try anything

at this point. Is your TNF level really high? Mine is 167, and when that number

comes down with the enbrel, my arthritis gets better, my lungs totally clear up

to the point where I don't need ANY breathing meds, my stomach gets better, my

endometriosis pain gets better, it's been such a miracle drug for me, and I'm so

discouraged and pissed off I can't get it now. So right now for me, the lung

situation is probably the worst thing I'm going through, and addtionally, what I

wrote previously about being young and " looking fine " , doesn't help the

situation at all!! Sometimes I think even doctors have the misconception that if

you " look fine " you must be 'ok'. GGGRRRRRRRR.......

Jules

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> At first, yes, I would have agreed with everyone's basic complaint that

> every day is different and we NEVER know what we will wake up to, but with

> this current lung problem, I have to say that IT'S been the worst of the RA.

> My doctor originally " yelled " at me for waiting till Monday to tell him I

> was having problems, instead of reaching him last Friday when it started.

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> In my LAY person's mind, RA is ARTHRITIS. It affects bones and joints. Why

> the HECK would I have connected RA and my lungs? NOW, I know better and

> EVERY little question will go to HIM first. I will never assume it's not RA

> RELATED.

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> But, the lung problem is the WORST. I've always thought, I'd never want to

> die by drowning or by fire..and now I've totally confirmed it. NOT being

> able to breathe is the WORST feeling :-(

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> I can look forward to living in a wheelchair. I have enough loving people

> around me to open cans and jars, etc. But NOT being able to get air...way

> too scary :-)

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> Penny

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