Dave here. How ya doin'? Husband and Father of two boys, 14 and 12.
April of 2011 - Had a birthday party for my oldest son, who was turning 13. We played AirSoft in the woods behind our home. The next morning, as usual, I was feeling stiff after running / jumping through the woods in heavy ballistic gear.
The soreness didn't go away, it got worse... then I had an epic, 13 hour long nose bleed. It was awesome.
Soon, I couldn't lift a drinking cup to my mouth without being in significant pain...
Went to see the Doctor - in the woods, eh? Well, it's Lyme Disease, maybe Rocky Mountain Spotted Fever, etc.
All those tests came back negative.
4 months go by, I'm still in severe pain, Doctors have no clue. I was now almost blind in my left eye, both eyes were VERY red, so I have an intra-ocular specialist, a rheumatologist, and my family physician.
I got bumps on my arms that looked weird. I started seeing an ENT doctor too - my sinuses were crazy.
ENT had a conclusion - Vasculitis.
Dermatologist did a biopsy - Vasculitis.
Intra-Ocular guru took some photos / scans - Vasculitis.
Rheumatologist diagnosed me with WG. After he found this out, he took me immediately to the Infusion Lab and I got 500MG of steroids. Yay.
Since then, I've lived the life of Prednisone, Cytoxan, Bactrim and Pain Meds.
The weight gain has been awful. Over 60lbs. I'm just now bouncing back.
A month ago, they observed that I had no potassium or hemoglobin in my blood. They were trying to call me but I was busy with my Boy Scouts hiking up a mountain - in which I had extreme difficulty, and couldn't understand why... well, I found out when I answered the phone a few days later!
I went off the chemo for a couple of weeks, and started a potassium suppliment. When I stopped the Cytoxan, it immediately flared up and caused inflammation in my brain, which has now made me cross-eyed as the day progresses. There's no consistency, so they can't solve it with prism lenses.
I draw pictures for a living. This is not cool.
Back on cytoxan, ramping down the Prednisone, weight is starting to come off. Working out at the gym 5 days a week and eating a healthy diet.
Funny part is, this disease is the best thing that has ever happened to me. I feel like I won the lottery. Since you've endured this mile-long post, I'll share that with you soon.
Have a good one,
Davey
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