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    Posted February 28, 2014 by
    Captjill
    Location
    Englewood, Florida
    Assignment
    Assignment
    This iReport is part of an assignment:
    Living with a rare disease?

    Double dose of Rare Disease Please

     

    In 1994 I was diagnosed with Psuedotumor Cerebri which is now known as Idiopathic Intracranial Hypertension. It is a buildup of spinal fluid in the brain which squeezes the optic nerves and can cause blindness. The symptoms are identical to having a brain tumor without the actual tumor. I found out I had this disease during an eye exam I scheduled because of a watery spot in the middle of my field of vision. The doctor immediately sent me over to the hospital for a CT scan and that was the day I found out I had IIH. I was sent to see a neurological opthomoligist who preformed two separate surgeries on each optic nerve called optic nerve sheath fenestrations. Which basically means he cut a hole in the sheath surrounding my optic nerves to drain the excess fluid. It took six months for my vision to return to normal (it was blurry after surgery). I also had a lumbar puncture to check the pressure of my spinal fluid and during that procedure I picked up a virus that caused Bell's Palsy , the whole right side of my face was paralyzed for 4 weeks. I have been on acetazolamide (Diamox) for 20 years and was warned long term use will ruin my kidneys. I have suffered with migraine like headaches , dizziness, neck pain and any other symptom of brain tumor you could think of for the past 20 years. Then in 2003 I was hospitalized for 11 days with three blood clots on my left lung and put on warfarin for the rest of my life but I was never told why or what caused the clots. In 2009 I was hospitalized for an emergency hysterectomy because I almost bled to death (partly due to being on warfarin) This is when a hospitalist researched my records and found I was diagnosed in 2003 with Lupus anti coagulant factor in my blood. I was never told. He repeated tests and confirmed this diagnosis. It does not mean I have Lupus but I have a more than average chance of possibly getting it too. So how has this all affected my life? Well the lupus anticoagulant explains my miscarriages and premature birth and death of my only daughter. I can't take just any over the counter pain meds because they could interact with the warfarin and if I could get a doctor to write a narcotic pain script I probably couldn't fill it because of the new laws in this state have made it very hard to get narcotic pain meds. I also couldn't afford it between the 4 meds I do take I usually need help from my mother to pay for them. I am on two medications that make me super sensitive to sun exposure , not a good thing living in Florida. So, in the last twenty years I have slowed down tried to keep out of the sun because no matter how much sunscreen I use I always burn, I have gained a hundred pounds and the older I get the more symptoms keep popping up slowing me down even more . I tried for disability years ago and was denied because my rare diseases were not recognized by social security (or so I was told) and I can not work full time I do have a very part time job. Total income last year was just over two thousand dollars. The hardest part of all this is these are chronic illnesses that can't be "cured" and I have suffered mostly in silence because nobody knows just how seriously scary this all is. They just don't get it. Sometimes I wish It had been a tumor that could have been cut out radiated and chemoed at least I'd have a chance to be rid of this,no disrespect to cancer patients at all.

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