Sarcoidosis

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Living with Sarcoidosis ...

I was 27 years old when I diagnosed... right out of nursing school...it was originally found in my spleen. It took almost a month in the hospital for them to figure out it was Sarcoidosis.My spleen was the size of a basketball and weighed around 3.5 lbs. Due to the high calcium...my kidneys were shutting down and I was on the verge of a heart attack. I went through numerous test and questionable diagnosis before they confirmed Sarcoidosis via pathology from my spleen. Since 2001...it has attacked other organs...lungs...liver...pancreas...colon...I have been on prednisone and tried other medications including experimental medications. I have good days...and bad days...but I am a warrior...a survivor...!!! I lost my doctor that treated me since my diagnosis in August 2015 when he was hit by a drunk driver...losing him felt like I'd lost my lifeline...and is a struggle to find trust and confidence in another doctor...I am a single mom of 3 boys...I stay positive...work full time...try to stay focused...and not allow myself to be consumed with being sick.

My motto:I have this disease...it does NOT have me...!!!

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