HS disease rare autoimmune
Its been a LONG Journey. almost 3 solid years of chronic pain. Today, I am living virtually pain free. I decided to share my story to give you hope- because you CAN get better too.. I don't care what your health circumstances.
In the winter of 2009 at the age of 25 I became pregnant. It was a surprise, but we were overjoyed. With that pregnancy came HORRIBLE morning sickness. Or so that's what I thought. In reality I was having severe sinus issues and my digestion became a complete mess. Headaches, nausea from post nasal drip, headaches. Each day was a struggle. Then, just as I entered the second trimester I miscarried. My health from that point on was never the same.
Months after the pregnancy my digestion continued to be off balance. One morning 6 months after the miscarriage I woke up with a stabbing pain in my right side.. as if someone was jabbing a pencil into me, over and over. That began the serious quest to get better.
Doctor after doctor after doctor. No one knew what was wrong. I tested negative for celiac and my health looked perfect on every other front according to bloodtests. . I suspected hypothyroidism as it runs in my family. But my doctors refused to treat me for that. Finally after seeing my 2nd gastroenterologist I was told my gallbladder was acting up. I did not have gallstones, but yet it was over- working and causing me the cramping and stabbing sensation. It took 7 months to get that diagnosis. During that time frame my digestion literally came to a hault. I became dependent on laxatives and fiber, which barely worked.
My gallbladder was removed, with the promise that my health would return to a perfect state thereafter. What they found during surgery.. was an extremely inflamed organ. I thought my struggles were over.. little did I know they had just began!
The stabbing pain went away, but my digestion worsened. Again I went on the circuit to find a doctor to figure me out. During this time I was in and out of the emergency room with heartburn so severe I was afraid to eat. I was exhausted, cold, my hair was falling out, my face and eyelids always puffy, I had muscle and joint pain so severe it was impossible to get out of bed some days. I was falling apart and no one could tell me why.
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Participating provincial and territorial health ministers discussed the significant challenges they face in providing new drug therapies to treat rare diseases.