Tuesday, January 24, 2012

How did I get here?

I'm going to try to start at the beginning and give you a condensed version of how I got here, but I'll warn you in advance...I can be a bit long-winded.

They (you know them, right?) say it takes an average of five years to diagnose an autoimmune disorder. Looking back, mine took closer to 15 years (and I still feel lucky that I got a doctor that finally had the light bulb go on). When I was 19, I went on Accutane for severe acne for six months. I don't think the Accutane caused my autoimmune disorder, but I think it may have "released" it. I started having dry eye symptoms the year after going off of the Accutane. I was also diagnosed with depression around the same time.

For the next 10 years I continued to battle the dry eyes, frequent sinus infections, respiratory allergies, severe acid reflux and a generally upset stomach on a regular basis. After my daughter my was born, my symptoms changed a bit. My allergies calmed down some, the acid reflux all but disappeared (at least the pain did, I still have scarring on my esophagus), and most importantly when Annyka was about 7 months old, I got the first of many infections in my parotid glands.

At the time, I didn't know that's what it was. All I knew was that I had a large (golf-ball sized) hard lump on the side of my neck, under my jaw. I went to two different doctors and was prescribed a couple rounds of antibiotics. It was chalked up to a complication of sinus infection(s). I ended up having to do acupunture and TENS therapy to get rid of it. Over the next five years, I would get these infections a couple times a year, usually on the tail end of a sinus infection. Eventually I figured out it was my salivary glands and that I could treat them at home with heat, mucinex and massage. Antibiotics seldom got rid of them, so I stopped going to the doctor when I got them.

In the summer of 2009, I became extremely fatigued. In May, I ran my first half-maraton (after training for about 6 months). I felt great, but by August, I couldn't walk a mile without having to stop to rest and catch my breath several times. Something was wrong. I was diagnosed with hypothyroidism and started on medication in the fall.

That winter was rough. I was sick with a sinus infection that I just couldn't shake for about 6 weeks and I had three separate incidents of parotitis throughout the winter. I finally started feeling less tired and able to breath again in the spring, but I still didn't feel "normal." In April I asked my doctor to retest my thyroid because I felt off. My appetite didn't feel normal and I just didn't feel like myself. He said "you haven't gained any weight, so everything is probably fine."

The first weekend in June I woke up on a Sunday morning (following a stressful night in the ER with my daughter for a concussion) with a raging infection - fever, aching throughout my body and a very inflamed, hard parotid gland. I'd had enough. I wasn't going back to my GP to be belittled again so I found an ENT. And that's when things started to look up.

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