Living with a Chronic Disease

People ask me all the time what it’s like to have RA.  It is very hard to explain to people and for them to actually get it and understand.  On the outside I do not look sick.  The exception to this is when my hands are swollen.  This outward sign people can see.  What is happening inside?  Well that’s much different.  It hurts to breath because either I have Costochondritis or Pleurisy at any given time.  My hands hurt.  People do not understand this because they do not understand the difference between OA and RA.  I often wish they called the disease something different.

One moment I feel fine.  Then in ten more minutes it hurts to stand.  It hurts to walk.  I can’t turn my head because my neck and spine hurt and feel like they are on fire.  I can’t eat properly because my jaw hurts so much.

The pain is sometimes manageable.  Sometimes I just cry. If I could describe the pain I would say it feels like having broken a bone.  Like I’ve been crushed beneath something large and heavy. I can’t take the certain drugs that I know help me because they raise my sugar levels and could result in a coma or raise my blood pressure and that could cause a stroke.  I’m on 9 pills a day.  I take a total of 23 injections from various medications a week.  That is 23 times I have to stab myself with a needle in the course of just one week.  Not all are for the RA but from my body being debilitated with this disease it brings on other issues and other diseases.

It’s a giant black hole that I can’t climb out of and it’s annoying.

As bad as I feel physically I have only missed two days of work because of my RA in the last 11 years.  I feel like this an accomplishment.  It’s my badge of honor in the war on this disease.

So what does RA feel like? Well it feels like this…I would never in a million years wish this disease on anyone.  It is painful, debilitating and scary.  You don’t look sick until your body totally shuts down and you are hooked up to machines in the hospital.  THEN…you look sick and everyone is surprised how quickly you got sick.

Weird, right?

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