Sunday, May 1, 2016

Mixed connective Tissue Disease - My story

So, if you read some of my previous writings regarding my health you know that for a long time I was  suffering with no idea of what was happening to my body.  I went from one specialist to another, having this lab done, this test done, this scan done and nobody knew nothing.  I was angry, frustrated, and physically weak.  To say I was tired of it all would be an understatement.

Unable to work and provide for my hellspawn, I gave up and went back to my family in Connecticut.  It was a hard decision to make.  I thought, "It's okay.  We'll make the most of it."  It was the worst of it.  Truly.  My extended family was less than helpful and my social life was...non existent.  My new primary made me feel like everything I was feeling was in my head and he and my pulmonologist said that I needed to just change my diet and exercise more.  But I started having MORE things happen.  The numbness and tingling in my hands and feet grew worse, my joints ached so bad I couldn't walk up stairs, I couldn't lift more than 5lbs, I kouldn't hold anything in my left hand, and I was always tired no matter how much I slept.  After the initial onset in 2012, I had to suffer from spring 2013 to the fall/winter of 2014.

I had some labs done and the doctor said some stuff showed up in my labs and he was sending me to a rheumatologist.  By this time, my joints ached so bad I went to bed with a heating pad and took pain pills just to get through the day with no pain.  I kouldn't stand for long periods or sit in a shair.  Kooking was out, playing with my kids was out, forget doing my daughter's hair or tying shoes.

The rheumatologist was more friendly and compassionate.  She listened to everything I was saying.  I told her I felt like maybe I was wasting her time and it was all in my head.  She said, "No.  There's something going on and we'll figure it out."  We did blood work and she told me I had high markers for rheumatoid arthritis.  I was given some new meds and sent along for a follow up.  

Around that time, I also broke out into a rash on my face, neck, shoulders, and my hair was falling out in patches.  When I went to the dermatologist he felt it was something else-dermatomyositis.  Some photos were taken and he opened up communication with my rheumatologist.   Between the two of them, the meds I was given were diskontinued and a new round started.

Winter in Connecticut can be a beast and that winter was no joke.  My hands turned red, white, and blue.  My primary said it was Raynaud's and suggested ski gloves.  What the heck!?  How can one 37 year old have so many things NO-ONE ever heard of?

I noticed my eyes were really dry.  I attributed it to the cold and dry air.  Nope.  At my next appointment, the rheumatologist did a test and said I had Sjorgrens.  Another diagnosis.  Another disease.  Another specialist.  Another medication.  She did another panel of tests on me that was sent to Mayo clinic.  At my next appointment (Feb 2015-I think), she explained I had Mixed Connective Tissue disease.  It's an autoimmune disease in which several diseases are putting around inside all at once.  I was told I also had markers for lupus and that either the lupus or the rheumatoid arthritis caused my lung issue and hospitalization in 2012.  She said it doesn't happen often, but the organs can be affected long before the joints are affected.

So great.  When I do it,  I do it big.  I get stuff no-one ever heard of in health class or most of their science classes.  So, what do I do?  Start searching the internet for any and every shred of information I could.  Some of it was scary.  Some of it was enlightening.  But almost 3 years later-I finally had some answers. 

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