Jen Hill

Face 1820

I have had AS for probably 25 years, although I was just recently diagnosed. I always knew I had some arthritis but it came and went. I always just assumed I had a bad back also. A minor car crash when I was 18 became the reason I woke up in agony at 3 am every night and physically could not tolerate lying down.

My diagnosis finally came when I was sent to a rheumatologist after a severe bout of dactylitis in my toe was misdiagnosed as osteomyelitis and I spent 6 weeks on oral and daily IV antibiotics to no improvement. My first appointment, I’m sure the Doctor knew immediately what was wrong with me…he sent me for X-rays of my SI joints and for a HAL B27 gene test. Both were positive for AS.

Anti-inflammatory drugs don’t work well enough for me, so I am taking methotrexate (MTX), I guess indefinitely. I also take Meloxicam most days in addition. I don’t have a drug plan so at least they are inexpensive. Thankfully in Ontario Canada, we have pretty good health care and I have an excellent family Doctor.

I am a self-employed renovation contractor so I can be flexible with my work hours if need be but it keeps me moving every day. I play baseball in the summer and ice hockey all year round if I can find the ice-time.

I live with pain every day, as I’m sure many AS patients do. But like many, I have a high baseline pain tolerance and shrug off much of my discomfort. I don’t like to take narcotic drugs but sometimes that’s the answer for me. I avoid them until I cant. My pharmacy says I am the only customer who has ever left a filled prescription of Percocet sitting there for a couple weeks, but I will do everything to not become dependent or addicted to them. I mostly rely on Hydromorphone for relief from agony when nothing else works.

MTX is hard on me. I don’t tolerate it very well but it has slowed the progression right down, the benefits are real and crucial to me. Biologics are out of my price range so I’ll have to go with-out for the time being. If the MTX stops working or if I can no longer tolerate it, well, then I’ll cross that bridge.
My sympathy and also admiration for all those who suffer from AS, keep moving!

Ontario, Canada

 

 


One Response to “Jen Hill”

  1. Dear Jen,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

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