My symptoms started at the age of 15. My parotid gland would swell up, get very hard, red and painful. It was a mystery. At first they thought it was the mumps but that test came back negative. Then they removed my wisdom teeth because they were all impacted. One doctor said it was a "pre-arthritic condition". My all-time favorite was the quack who decided I had "extra loops" in my salivary glands that would cause a blockage and he stuck something very similar to fish wire into the glands in my cheek to "clear it out". Fast forward 9 years and I'm at an Urgent Care center for the swelling again. In a rare moment...the Urgent Care doctor asked if I had ever been tested for an autoimmune disease and that began my journey. I made an appointment immediately and found that I had both of the positive Sjgogren's Antibodies as well as a positive ANA and Rheumatoid factor. I also was diagnosed with Fibromyalgia. Not even two weeks prior to my diagnosis, I had found out that I was pregnant as well which not only limited my treatment options at the time, but it also caused me to see an OB heart specialist since the SJS Antibodies can cause heart blockage in fetuses.
Looking back, the beginning of my SJS journey seems so simple. I remember thinking....well, I just can't wear contacts anymore and will need to stay on top of dental work. As anyone living with an autoimmune disease can tell you, there are periods of remission. I had times where I could go a year or two without even meds. Then there would be periods of no sleep, pure exhaustion, vision problems and more dental problems than I could handle. I spent a month during the summer of 2007 legally blind in one eye and almost legally blind in the other due to dryness. I've had all of my tear ducts plugged so that I can retain any moisture that I do create and still I struggle with dryness in my eyes. I think most people think of SJS as more of a fluff disease....some dryness, some dental work. It's an invisible, insidious disease and people just don't realize how much work and effort it takes. Maintaining moisture in my eyes and mouth, all the medications I am on that I have to juggle. The monthly blood work that has to be done, the frequent doctor appointments, the pure exhaustion of the disease....it can be miserable and soul sucking.
And then....in early December of last year I became miserably ill. I was so sick that my husband actually had to drive me home from work on Monday morning when the illness hit me swiftly like a ton of bricks. I had a high temp, nausea, vomiting, headaches....all of the classic symptoms of meningitis minus the neck ache. My doctor said it was the flu bug and sent me home to rest and take lots of fluids. I was off four days that week but then started to feel fine again. Less than two weeks later, I was in ER getting a spinal tap. Again, the illness hit swiftly...in less than 2 hours I went from fine and eating dinner to barely conscious and violently ill. I lost consciousness that evening and didn't regain it for two days. I spent five days in ICU and was sent home on very heavy IV antibiotics because they were proactively treating me for bacterial meningitis. The spinal tap came back negative and all of my blood work was normal (as normal as it can be for a Sjoggie). I was hospitalized twice more over the next two weeks for complications of the spinal tap and then the antibiotics. Finally, it seemed like I was on the mend until the middle of January when it hit again with a vengeance. Again, it took less than two hours for me to go from normal to violently ill and I spent another week in ICU. I was sent home on IV antibiotics again even though the spinal taps were all negative. Life resumed and I finally went back to work in March. On April 1st, the illness struck again and I spent another week in ICU. At this point, they had finally determined that the meningitis was being caused by my SJS-it is apparently a very rare symptom to have aseptic (without infection) meningitis as a Sjogren's patient. The rest of the summer passed quite normally but in early October, meningitis struck again and I was hospitalized for almost a week. Less than two weeks later, it struck again. I was released from the hospital on Tuesday of this week and still I am very weak and tired. This constant illness is draining...and being hospitalized always seems to make me more ill. I'm covered in bruises (twice daily injections of Heprin will do that to you), pokes and aches. I am so tired that even doing the smallest chore can make me shaky and require me to plop on the couch for a few hours. Yesterday, for example, I spent the afternoon with a girlfriend. Four hours, just hanging at her house visiting on the couch. By the time I got home, I was so shaky my husband quickly ushered me to the couch and made alternate plans for dinner as there was no way I was going to be up to cooking.
I know that some people think that those of us who suffer from autoimmune diseases are hypochondriacs, that we exaggerate how much the diseases affect us but if they could just live one day in our shoes, I think it would open their eyes to the daily suffering we go through. Ok ok.....I'll get off my soap box!
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