Current status - up in the air

Friday, May 28, 2010 1 Comments A+ a-

I think I've covered everything until the most recent flare.  Notice I said, think.  There has been so much, some things have gotten lost in the jumble.

Originally we had planned to move to CO after our son finished high school in 2011.  However, the Raynaud's and feeling crappier during the winter months derailed those plans.  We changed plans and decided to move to a warmer climate.  The south of France?  Spain?  Puerto Rico?  Florida?

Instead of waiting until 2011, we uprooted the family and moved up the timetable.  Real estate in FL turned out to be VERY affordable for us NOW and honestly, I didn't know if I could "survive" another winter in the north.  Winters had become excruciating and intolerable for me.  More Raynaud's lead to more ulcers.  The cold leads to more achey days.  Having to wear 20 layers, not be able to move and STILL be cold was dreadful.  By the end of winter I would end up being ulcer ridden, in pain, miserable and depressed.

So, we started the job and house search at the end of the summer 2009.  By Thanksgiving we had jobs worked out and by Christmas, we had put a contract on a house just outside of Tampa.

We made the move at the end of February.

During the winter I had begun to get some shoulder aches going on.   By the time the move rolled around I was barely able to lift my arms.  Then on the drive here I noticed skin changes on my legs.

The first few days I was here, I was exhausted, achey, and stayed in bed.

The doc and I decided that I should stay out of work for awhile and I started the short term disability process.

March was a roller coaster.  Some good days.  Some bad.  Seems like more bad than good.  Then I saw all my docs in April for my check ups. 

The cardiologist was good.  Nothing new.  Echos look the same.  Come back in 6 months.

Rheumatolgoist and Pulmonary tests not so good.  The rheumy can "see" the joint and skin issues I've noticed.  The pulmonary function has decreased.  A chest scan shows some new scarring in my right lung.  Blood tests show "activity."

Welcome to feeling like we're back to pre-chemo 2004.  Ugh!  But, I'm not letting it get me down.  The first couple of days after finding out results were kind of icky, but I'm forcing myself out of the slump.

We're trying new meds.  We won't know for awhile if they're working.  I get monthly blood work done to keep an eye on things.  The latest ones should some increased liver function, which may be an error.  We'll see with the next round of blood work.

After some chats with the doctor, I've added some yoga and horse riding therapy to my routine to serve as physical therapy.  I think they are helping.  The warm weather is helping.  I haven't noticed a serious Raynaud's episode in my hands since we moved.  I do get them in my feet when I don't wear slippers in the house, but I don't notice them there as much as if they were in my hands.  Now, I only get episodes in my hands when I go to the grocery store and forget my mittens.   

I have 2 knuckle ulcers caused by the knuckles rubbing on things like boxes and such during the unpacking process.  Thank goodness for Nexcare, again.  Still.

My lung seems to be rubbing a bit lately.  But, I suspect that's to be expected with the current lung issues.  It doesn't hurt.  I just know it's there.  It usually pops up at the end of the day or when I've "overdone" it.

Those have become part of my daily life now.  Like my curled, gnarled hands, they are things I consider annoyances that are part of being me.

Otherwise, my status is still up in the air until I see the doc in July.  We will look over all of the blood work, and probably have more pulmonary tests and CT scans.  That's when we'll see if there is still lung activity or if we've quieted that down again.

In the meantime, overall, I feel generally well.  For me.  Less achey.  More flexible.  More energetic.  More upbeat.  More positive.

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simone
AUTHOR
May 29, 2010 at 4:26 PM delete

Whew. What a roller coaster! 
Thanks for putting this out there. Peace.

And keep rollin' on, girl. 

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