For a little over two weeks now I have been feeling AWFUL.  I’m talking major pain flare up of my underlying condition (Scleroderma/ Fibromyalgia/ Lupus), fatigued, strange thumping and palpitations of my heart, fainting feelings, chills and hot flashes, the list goes on.  Each day I feel like I am white-knuckling it, meaning I am holding on just to make it through the day.  And I get to a point where I just can’t keep it together anymore.

The ironic part is that I see friends, family, and even the staff in doctor offices and everyone says how great I look.  That I LOOK healthy!  For four years now I have never looked how I felt.  Aside from becoming very thing at one point and quite gray when my heart was barely pumping, I have done a pretty good job of looking “OK” on the outside.  Because of this sometimes people forget or do not realize what I’m dealing with. 

The other day I attended a charity event for Frenz for Cause where there was an amazing turnout for a Zumbathon to benefit lung cancer at Memorial Sloan Kettering.  It was so hard to sit there and not participate.  I wanted to get up and dance and let out all of my frustrations and just not care and move every part of my body until I couldn’t anymore.  I wanted to sweat and be out of breath and feel invigorated!  I’ve wanted to do it for years –just go crazy and DANCE.  But the harsh reality is that I cannot.  My body does not allow for that.  My heart simply is not strong enough.  I am not allowed to do any sort of cardio, I can barely do subway stairs let alone a workout.  And I’m 30 years old.  This is my life, and I always think I have accepted it but sometimes days like that one creep up and make me remember all the things I cannot do and wish so badly I could.

Each day I’m waking up hoping that it’s the day I feel better.  And today, on the 15th or 16th day of pain and weakness it’s getting to me mentally.  I am pretty miserable today. I just want to feel good.