Monday, May 17, 2010

Flare up #1

By the fall of 2005, I had started traveling again for work.  Life was getting back on track.  I was feeling good.  

I spent a week or so in HI for work and really used the time to try to de-stress.  Though I was feeling good and my health was getting better, the continuing decline of my marriage was starting to tire me out.

When I returned from HI, I ended up sick for a little while.  I had the aches, pains, and symptoms of a flu.  I attributed it to my recent trip, being tired, on an airplane, etc.  I assumed I had just picked up something.  We took all the necessary measures and steps to treat the bug, but it just didn't seem to want to go away.  

I don't remember when I got in to see my rheumatologist.  If it was a routine appointment or a special one to figure out what was going on.

Either way, blood tests showed that I had slightly elevated muscle enzymes.  We decided to just wait a little bit to see what was going on.  Was I have some mild residual Sclero activity?  Was it just a bug?  What was the deal?

Shortly, the skin on my arms began to itch.  At first it was just a little bit here and there.  Like little bug bite itches.

Soon, it was constant.  24x7.  I would subconsciously scratch throughout the day.  In the car, I'd rub myself on the seat belt.  At work, the edge of my desk.  My chair.  My sweater.  Anything to try to relieve the itching.  I scratched in my sleep.  Soon I was digging sores into my arms.  I was covered in bandages.  

At this point in time, I should have purchased stock in Band-aid or Nexcare.  I'd be a millionare by now.  I think I have single handedly kept both companies in business.   Today, I purchase only Nexcare bandages.  They stick to my skin without irritating it.  I can leave them on for a couple days and they can withstand showers, etc.  I'm wearing one right now!  Last week, I had 4 on at a time.

Moving on ...

Sometimes, co-workers would tell me to stop scratching.  I didn't even realize I was doing it.

The skin on my arms, hands, and face began tightening.  Getting hard.  Shiny.  The skin was so tight it was causing my fingers to curl and drawing my arms into my body, creating contractures.  


Scleroderma also causes the skin to darken where it's being affected, so my arms always look like I have a tan.  However, where the skin has "stretched" or I have had sores, the skin loses its pigment and is blotchy.  I have big white blotches on my arms, wrists, and even a few small ones around my mouth.

The itching and burning are like no other.  It's nothing I can describe to anyone who hasn't felt it before.  I had chicken pox as a child.  I've had poison ivy before.  Those pale in comparison.  I literally wanted to rip my skin off.  The only relief I could find was sitting in a tub of hot water. 


Unfortunately, the contractures of my arms may never be completely gone.  They are much better than they were.  My left arm is almost returned to normal.  I can almost straighten it.  My right arm is still slightly limited, but is better than it was, as well. 

My hands will never get better.  They slowly continue to get worse.  As the fingers curl, they lose their movement and freeze and harden in a curled state.  Slowly continuing to curl over time.

This itching, tight skin episode lasted for roughly eight months, maybe even a year, calming down in the fall of 2006.  And I hope it never returns.  I'll take the aches and pains Scleroderma causes me.  The lung issues, I can handle.  The itching and burning will make you crazy.  Literally.  I've been up at 2 a.m. having a panic attack because I've had a dry skin, itchy, night and was sure that another episode was starting again.

My skin is still tight in spots and I'm just now seeing the final softening in my upper arms.  Almost 4 years after this flare up started.

No comments: