Thursday, March 10, 2011

Life As a Dinosaur: Hoping for Relief

June 2008 - My primary doctor received the results of my blood tests and referred me to see a rheumatologist. Surprisingly, I was able to get an appointment with the rheumatologist within the week (two weeks from when my toe first swelled up). It normally takes 5-6 weeks of waiting to get in to a specialist around here, so this was amazing. At this point I'm still not on any painkillers other than Aleve, but I'm hopeful that this visit will change that.

Shoes are also not my friend at this time, which for me, is seriously sad. I mean for much of my life up to this point I always wore flats. I was just getting into shoes with heals, and starting to build a small collection of cute shoes. But let me tell you, anything other than flats or tennis shoes meant a whole new level of pain in the toes. And shoes that pinched the toes together even the slightest amount were out of the picture. Also, at this time my hands aren't severely bothered. The fingers on my right hand are a bit stiff in the mornings, but loosen up fairly quickly. I'm also experiencing some minor back spasms and all over body aches, nothing too severe, just bothersome.

When we (TheHusband of course came with) first see the rheumatologist she asks a few questions, pokes a few places, looks at my hands and feet and states that I have ankylosing spondylitis. Say what?! She also states that it might be reactive arthritis, but she's pretty sure it's the first one. She asks questions about my diet and exercise program. Both took a nose dive when my primary doctor benched me from the stationary bike a couple months before (because of "runners knee"), and then I lost even more momentum when I was diagnosed with the plantar fasciitis. This whole swollen toe thing had forced them into a death spiral, or so I thought at the time (they would get worse).

And what did all this get me? An order for more lab work, an order for x-rays of the hands, feet, lower back and hips, and orders to come back in two weeks. That's right, no pain meds, no instructions for ice/heat therapy. Just "you may have this strange sounding illness which is related to arthritis" and "I'll see you in a couple weeks." My spirits were already pretty low and this visit did not help them. I can't speak for TheHusband, but I'm sure I was getting to be pretty miserable to live with (that too, would get worse).

As my second appointment with the rheumatologist approaches I am beginning to have more and more symptoms. A second toe on my right foot has swollen to epic proportions and does not bend at all the way a normal toe should bend. I've also started to have pain in my left foot, right in the area that is most often associated with gout. I wear shoes as little as possible, and even at work I hobble around in my stocking feet whenever possible. It's a good thing it's summer and a lot of people are vacationing. The minor back spasms have increased and are almost constant. While not painful, they are annoying and sometimes distracting.

It is at the second rheumatology appointment that I finally start to see a glimmer of hope. At last, someone is prescribing drugs! Mind you, I am NOT a person who takes prescriptions or over the counter medications lightly. In fact I try to avoid them as much as possible, but I have been the walking wounded for a month now and both TheHusband and I need relief. The rheumie prescribes fish oil pills (a natural anti-inflammatory & good for the heart too!) and prednisone (a corticosteroid). Additionally, she puts me on mega doses of vitamin D. Low levels of vitamin D can, apparently, cause inflammation throughout the body, and my levels are VERY low. So low they are practically non-existent.

When I leave her office this time I am hopeful. Am I excited about taking all these pills? Not at all, but if they will help me feel human again I'm willing to give them a try. Heck, at this point I'd give just about anything a try to even feel half human again. She wants to see me again in a month. This should give everything time to start working.


Author's note: This is the second post in a series of posts regarding my experience(s) with an autoimmune disease. My experience is unique to me and does not speak for all patients with autoimmune diseases. 

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