Living with Systemic Diffuse Scleroderma has been a journey of different directions for 7 years. Most of us plan our lifes with dreams of reaching our goals but when sucker-punched by a rare, mostly unknown incurable disease like Scleroderma, the dreams turn into nightmares and goals turn into living through another Scleroderma crisis. Scleroderma changes a patient physically, mentally and emotionally from medications/side affects, pain and lack of understanding and compassion from family, friends and the medical community. We look so good to them, we must be doing better and Scleroderma isnt affecting us like it was. We have good days, we have yucky want to die days but Scleroderma remains active in its destruction within our bodies and our good days give us hope while the yucky days, remind us how fragile we are as Scleroderma patients. Yes, we are extremely fragile because our immune systems dont work to protect us from germs nor nasty bacteria so yes, we for the most part look normal and try to live as normal a life as we can. I love my life, I wake up every day with a good attitude and I go to bed with a good attitude because I have FAITH, HOPE & I BELIEVE! I pray for everyone affected by Scleroderma that you all be blessed with Strength and Courage to deal with the pain, agony and daily suffering. Live, Laugh, Love in the moment but plan for your future! Angel hugs with healing prayers
Posted on: Fri, 21 Nov 2014 04:13:49 +0000
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