A Sarcoidosis story

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To most everyone when you hear you have sarcoidosis you wonder what the heck is that.  

I had several seizures and was rushed to the nearest hospital.  I continued to have them so they airlifted me to a larger medical facility.  After doing a biopsy they confirmed I had sarc.  They put me on 60 mg of Prednisone and after nine days in hospital they sent me home.  Less than a week later as I was getting ready for church I passed out.  When I came to I had my wife check my blood pressure and pulse.  My heart rate was 30 beats per minute.  Another ambulance ride to local hospital and flight to a cardiac center.  They confirmed I was in complete heart block and cardiac arrest.  They installed a pacemaker/defibrillator and started me on a drug called Cell Cept.  One day soon after I noticed everything I looked at was double.  Went back to hospital and was sent to neuroptimologist.  I was diagnosed with 4th nerve pulsy and skew deviation brought on by the search.  My local cardiologist referred me to the Mayo Clinic.  

I have been on and weened off Prednisone on three occasions.  When the Prednisone gets below 15 mg the sarcoidosis becomes active and spreads.  Currently it is in my brain, spine, bones, spleen, thyroid, heart, and eyes.  A year ago it was in about half of those areas.  My short term memory is very poor, cardiac function has continued to worsen and more pain in areas I didn't have pain a year ago.  One of the worse parts of the disease for me is fatigue.  Always tired, can't keep focused and getting depressed.  Men's also may have an affect on these issues.  Sarcoidosis is real, it is relenting and is so unpredictable.  But I will not let this disease define who I am.  When asked how am I doing I simply say, "I am doing good".  I am blessed to have an incredibly strong wife and great kids.  My extended family is also very supportive as is my church family.  My heart goes out to those young people who get this disease.  Please know I am praying for you.  God Bless to all!!!