My life

Lurching from one disaster to another...just a suburban princess trying to get by!

Wednesday, 27 April 2011

A bastard of a thing...

...Rheumatoid arthritis that is.
MrQ was diagnosed with this disease in his early 30’s.
Life was good, our son was a few months old, MrQ didn’t mind his job and I was a SAHM.
Then one day MrQ did the mowing with our son in a back-pack carrier thing.  A few hours afterwards he could barely move his neck, he was in agony. 
Over the next few weeks he started to grow more and more tired, bone shattering, go to bed at 7.30pm and sleep 12 hours every night kind of tired.  He constantly had a temperature, was weak and ached all over.
The doctor’s couldn’t find what was wrong...we genuinely thought it was the “Big C”, used to cry ourselves to sleep at night...bad times.
He couldn’t do much for himself, was in agony and sleeping constantly. Depression had set in so he was not a joy to be around I can tell you.  I went from having it all to having to do it all. My active, sporty, happy go lucky husband became a shadow of his former almost finished us.
Eventually they diagnosed RA.  We were surprised. Wasn’t arthritis something old people get, giving them another reason to whinge and ugly, bent didn’t make you so ill you thought you were dying? No there are two types.  Osteo is a bugger but it isn’t in the same league as RA.
Do you know how hard it is to find a specialist who gives a damn, who seems to know what they are doing...bloody hard.  The drugs available to sufferers of this disease are brutal, and often ineffective.  The side effects can almost be worse than the disease itself.  Then there are the things they don’t tell you about, the painful cysts, the loss of eye-sight, the frozen joints, and the likelihood of osteoporosis...
Eventually we found medication that worked, it is horrible and necessitates frequent liver function tests but it holds most of the symptoms at bay.  They advised that it is usually effective for 10 or so years, it has now been 17 and things are Ok at the moment.  Problem is after this medication there isn’t much left, either drugs that destroy your heart or drugs used in chemo that destroy everything else.
Every week it seems the current affairs shows talk of miracle cures for Arthritis, don’t be fooled, it is nearly always Osteoarthritis.  The fact is, it is not in the drug company’s interests to find an effective treatment or even cure for this horrible disease, they make billions of dollars a years by selling the treatments they have used for many years, why would they bother with a cure? There are never new wonder drugs for RA.
We manage, life is good again.  The disease is there but no longer has a stranglehold on our lives...for now.

UPDATE: After writing this post I came across this article in the newspaper.  I guess for some the benefits may outweigh the risks!  If they can work out the kinks maybe this is a positive sign.

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