My symptoms started at 15. At first it was a swelling of my cheek along my jawline that would get hard, sometimes red and always very painful. You wouldn't believe the litany of oddball ideas that doctors tossed at me. First it was mumps but that came back negative. Then it was due to my wisdom teeth though it continued to happen after they were removed. After that it was a "pre-arthritic condition" with no cure. The worst was the ENT doc who told me it was due to extra loops in my salivary glands. His cure? To stick something similar to fish wire into my salivary glands inside my cheeks and "flush" the loops out. Ouch. Finally, nearly ten years later I was given the correct diagnosis by...wait for it.....an Urgent Care doctor! Who knew? My previous experiences in Urgent Care were all about waiting too long to be referred on to my regular doctor. This brilliant man asked me if I had ever heard of Sjogren's Syndrome. Of course, I had not. Most of the world hasn't. After I tested positive for SJS, I was referred on to a Rheumatologist and there my journey began.
After my initial diagnosis I was pregnant with Annika and could not take any of the medication that would have been prescribed. Instead, I went to physical therapy to assist with the symptoms and to help me with the Fibromyalgia that I was also diagnosed with. Over the next few years my SJS spent a lot of time in remission, but there were bouts of symptoms such as not being able to sleep at night, having many dental problems, my jaw continuing to swell and dry eyes.
The older I got, the worse the symptoms became. I spent nearly a month one summer legally blind in one eye and almost legally blind in the other due to the dryness problem. Minus that incident though, my illness was still quite manageable, if annoying.
Then, in December 2011, something strange happened. I was hospitalized for meningitis only they couldn't find any cause for it. The cultures from my LP (lumbar puncture...i.e. spinal tap) were negative, I had no viral infections that could be causing it and suddenly I became a perfect patient for Doctor House. I was hospitalized five times over the next four months for a total of almost 30 days. 10 of those days were spent in ICU. Three of those visits were for meningitis. I had seven spinal taps, multiple MRIs, CAT scans, EEG's, three PICC lines and up to 14 pokes a day in my poor, bruised arms. After my second meningitis stay in late January, I happened to have a check up with my Rheumatologist. Luckily, he was able to give me a reason behind the reoccurring cases of meningitis. Unluckily, it was a very rare symptom of my SJS and therefore, there is no cure. The best they can do for me is treat my symptoms in an effort to keep the meningitis at bay.
During this medical drama that was my life, I became completely addicted to Laffy Taffy's. If any of you have ever had meningitis, you will know how miserably sick to your stomach it makes you. I lost 20 pounds in the first month of my illness because nothing sounded good and I could barely keep anything down. For some odd reason, I craved Laffy Taffy's. I mean, I had always liked them but now it seemed like they were one of only a few foods that could calm my stomach. Over the past eight months or so, each time the meningitis symptoms begin, I reach for a bag of Laffy Taffy's. I should probably own stock in them by now and this addiction is a standing family joke.
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