Saturday, December 22, 2012

Lupus Sucks - Part I

It's funny, I didn't make a huge post on Facebook.....I told a few close friends.  It seems easier just to say it here -- I have Lupus.  It's been almost 2 months since I found out.

So how did this all happen?

Two years ago, I had a TERRIBLE allergic reaction to an antibiotic right before I left to go on vacation.  I went to a drop in clinic because the Dr who prescribed the antibiotic "couldn't" see me -- she was totally booked.   (really?  your patient has an allergic reaction and you can't see her).  OK so long story short, I found a new dr.   She is VERY VERY cool and thorough.    She has called me at HOME to check on me.   I think I was like her 6th patient or something -- so we're bonded.  Anyway she gave me a shot for the reaction, told me to come back after vacation - which I did.

I had told her that my joints were REALLY REALLY bothering me.  It seems after I fell and broke my ankle/leg that I really started having bad pain.  And it was different - it was like a car accident all over kindof pain.    She put me on medication that really helped....which I have tried to come off of but STILL can't.  My body loves that stuff.

Anyway, she ran some blood tests and discovered I had a high sed rate.  This was two years ago!   She gave me a referral to see a Rheumatoid Dr and sent me on my way.  A year went by, I told her I would go -- but the medicine was helping so....I just didn't go.

The referral expired.

The next year, I got the Molly Flu (=strep + flu combined!) and that landed me in the hospital vomiting violently -- I was diagnosed with C-DIFF.  It was HORRIBLE!     After that whole debacle, which took weeks to get over, I got another referral because not only did I have a high sed rate, now I have a positive ANA test.   The positive ANA is a Lupus indicator.

So I walked around with this referral in my purse for about 10 more months.  I started working out with a trainer at 5:00 AM and dieting and still - nothing was happening -- except I was EXHAUSTED.  Falling asleep while sitting straight up exhausted.  I did this intense workout stuff for 2 months and decided to NOT let the referral run out this time.  I called.  This was June -- my appointment was in September.   He's a popular guy.

The months went by -- and I got worse.  I was foggy headed (still am).  My fatigue was out of this world.  I never wanted to get out of bed...then MY HAIR STARTED FALLING OUT.    I couldn't believe it.   So I googled the ANA thing -- found this

From mayoclinic.com


  • Fatigue and fever -- CHECK!  I always have a low grade fever!  Crazy.
  • Joint pain, stiffness and swelling  -- CHECK!  DOUBLE CHECK!
  • Butterfly-shaped rash on the face that covers the cheeks and bridge of the nose -- Yep :/
  • Skin lesions that appear or worsen with sun exposure -- I would say my scalp has the brunt of this
  • Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud's phenomenon) -- yep
  • Shortness of breath -- I thought it was the treadmill
  • Chest pain -- not really
  • Dry eyes -- ALL OF THE TIME!
  • Headaches, confusion, memory loss -- I called it "answering you in my head"  
My Dr. ran a million blood tests.  When I went to the results visit, my Mom went with me.  He walked in.

Dr :  Did you see your labs (online)?
Me:  Yes
Dr :  So you have Lupus.
Me:  OK.

It was a very odd conversation.  My mom focused on the "long life" questions, while I focused on the "don't cry!  don't cry!" internal argument.

So.  I have Lupus.  And Lupus Sucks.






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