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Scleroderma

Updated on February 25, 2016

But you don't LOOK sick

You have sclero-whata?Yes, I have SCLERODERMA. No, it’s not a cancer, although I have been on chemotherapy for it. No, it’s not contagious. No, there IS no cure.Most of the time, I don’t talk about it to those outside my family. This disease sucks:( I actually cried when my doctor gave me the paperwork for a “permanent” disability parking certificate.. that made it much more real.I have lung issues, kidney issues, skin issues, severe Raynaud’s issues, fatigue, and more. I have lost 25 pounds since my body cannot absorb nutrients well. I don’t drive as my vision is affected and I cannot grip the wheel.The drugs I take to try and slow down the progression come with their own severe side effects. I have been on chemotherapy, which unfortunately did not work for me. I am now on a DNA modifying drug... with that, my immune system is severely suppressed. I get ill as I have no immune system, then have to go off the drug until I heal - it’s a never ending cycle. I take numerous medications as scleroderma is affecting so much of my body - some for the raynaud’s, the thyroid that my body attacked, the lung involvement.... it’s like the game “whack a mole” - while we are trying to treat one issue, a bunch more pop up. A good day means being able to have the energy to get out of bed. A great day is being able to take a short walk with my dog.I can’t be around groups of people as a cold for me could turn into deadly pneumonia. A cut can turn into losing a finger. I am being told now that I need to move south or I will die fairly soon as the cold is causing my vascular issues to progress at an alarming rate.Don’t judge people based on how they “look!” Some people may be outraged if they see us pull into a handicap parking spot because “I don’t look ill.” Some people may wonder why I don’t go to community/family functions & judge me - um, because I don’t want to end up in the hospital. Some folks may think it’s fabulous that “I don’t have to work.” - I would LOVE to be able to be out and about! Some people may wonder why I seem antisocial now -because some days I just don’t have the energy to visit - and most days I feel like I have nothing new and exciting to talk about as I am mostly “homebound.” Some people may wonder why my husband is stressed, or has to take longer to complete jobs - it is because he is kind enough to bring me to my numerous doctor’s appointments and help run the household now.We ALL have our battles - I just decided I didn’t want to hide mine anymore!!

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