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Re: Remission, when?

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I am more or less in remission but not on Minocin which appears and disappears

from the pharmacies in England.

From: jeepgadget <vonda3d@...>

Subject: rheumatic Remission, when?

rheumatic

Date: Thursday, September 3, 2009, 10:36 AM

 

Hi, need some encouragement here. Does anyone have a remission story to tell me?

How long did it take? What were your labs (anti ccp and RF factor)? I'm on this

trx. 3 mo. now and suddenly getting worse with all joints affected. I work in

the OR and an RN and need my income to support my family. Is disability possible

temporarily? Should that process be started now with lots of red tape?

Thanks again, you are a wonderful group

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You will almost certainly be denied disability the first time you apply. You

will have to appeal and fight for it. I think you may be better off putting

the fight into getting through your shifts and maintaining your job. But

only you know what you can handle and what is best for you. Three months

into AP is a very short time frame, and there could be rough times ahead.

I'm almost completely recovered from an illness that doctors said would kill

me, just four years ago. Just three years ago I was getting trapped in my

car, as I was too weak to push the door open. You could have pushed me down

with your finger. Now I have normal strength and I'm pain free. It has all

been worth it. It took me over two years.

On Thu, Sep 3, 2009 at 5:36 AM, jeepgadget <vonda3d@...> wrote:

>

>

> Hi, need some encouragement here. Does anyone have a remission story to

> tell me? How long did it take? What were your labs (anti ccp and RF factor)?

> I'm on this trx. 3 mo. now and suddenly getting worse with all joints

> affected. I work in the OR and an RN and need my income to support my

> family. Is disability possible temporarily? Should that process be started

> now with lots of red tape?

>

> Thanks again, you are a wonderful group

>

>

>

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Yes, I am also in remission after 4 long hard years of fighting for my life..  I

have scleroderma.  I say have because once you have it, you may always get

re-infected, so you must keep up your vigil for the rest of your life.  3 months

is not enough time to even begin to put a dent into what is causing your

illness.  Remission is when the blood work comes back totally normal and the

symptoms have all subsided.  The reason is simple.  These microorganisms that

are causing your illness are nasty critters who fight back hard and as they do

they emit a toxic substance that will make you much sicker as you are getting

better. They don't want to die either.  I know this probably does not make sense

to you now, but it will.  This fight is for long term.  I tried hard to hang on

to my job.  Disability is difficult to get. I had to fight for 3 years and my

husband who had two CVA's, was bedridden in a hospital with tubes draining the

infection from

two pseudo cysts which formed in his pancreas, after they tore the pancreas

when they removed his spleen.  He went into the hospital in June of 1992 and

returned home in April 1993 with the tubes and the Hickman catheter for tube

feedings.  It took him almost one year of repeated filings for disability which

they kept denying before he was declared disabled. Then followed 6 years of

intense therapy.  Today, no one would ever suspect that he is a stroke victim. 

Imagine both of us disabled.  Somehow we made it.  We lost everything we had in

the process, house, car, income, personal items and all of our precious

valuables.  We ended living in an old RV at a campground, free, serving as

camphosts in lieu of rent for a space. But, we hung on to each other.  One does

what they have to do to survive.  Today, we are both on the comeback trail and

currently preparing to purchase a house in Puerto Rico and we have taken on the

care of my 95 year

old mom with Alzheimers.  You have not yet begun to fight.  Remember, that

which does not kill you will make you stronger.  Check, if through your job, you

can get temporary disability till the permanent one comes in.  Then fight for

your health or you won't be there to continue working later on.  You can always

get off disability when you are healthy again.  And you will get healthy, but

only you can do it.  It will take several years of non stop excellent health

care on yours' and your docs part. Experiment with various antibiotics under the

care of a good infectious disease doctor and give them time to work.  I am on

Minocin since 2005, Added Clindamycin since 2007, Zithromycin 2008 and 2009. 

Also have taken several trials of Bactrim and have Doxy ready to go should the

Minocin stop working.   Educate yourself and your doctor thoroughly re: your

specific condtion. Docs are not Gods.  They don't know everything and I stay

away from

the ones who think they know it all.   Health first, job later.  Money can

always be remade. Health is not alway reparable.  Don't let yourself down. 

Getting well will be your full time job from now on.  P.S. I am also a retired

nurse.  Nurse, heal thyself first, so you can help others later. I wish you all

the best and continued strength, power and the will to achieve remission.  It

doesn't come easy and not overnight.  Stay on this site and the Roadback site. 

Support groups are formed to help and through this and Roadback site, I am alive

to tell you that I am in remission after being given only 5 months to live. I

used to get stuck in the bathroom and needed to be rescued because I couldn't

turn the knob on an unlocked door. I still have scars on my lungs from pulmonary

fibrosis.. It took several years before my enlarged liver went back to normal. 

But I am breathing and living to the best of my abilities, not disabilities. You

too,

can reach remission.  The ones who fail are the ones who give up on

themselves.  You are at war with L-shaped bacteria that is killing your immune

system and you can do something about it.  Those who don't fight back, don't

survive.  Best to you,  Dolores & Mike  

>

>

> Hi, need some encouragement here. Does anyone have a remission story to

> tell me? How long did it take? What were your labs (anti ccp and RF factor)?

> I'm on this trx. 3 mo. now and suddenly getting worse with all joints

> affected. I work in the OR and an RN and need my income to support my

> family. Is disability possible temporarily? Should that process be started

> now with lots of red tape?

>

> Thanks again, you are a wonderful group

>

>

>

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