Becoming Disabled

Up until almost eight months ago, I could walk for miles without getting tired or sore. Walking, in fact, was my favorite exercise (preferably in the form of hiking) and my go-to remedy for stress. My second and third favorite activities were tap dancing and yoga, respectively.

Then I became injured from walking in hilly San Francisco’s Chinatown. I walked on uneven hills all the time, so I was surprised by that, but it happened. The doctors who saw me at the hospital said I’d be fine in two weeks. I iced and elevated and compressed as instructed, but I didn’t get better.

Back home, I saw my PCP who said I’d be fine in two weeks, but if I wasn’t, to call a podiatrist. I wasn’t, so I called the podiatrist and got in two weeks after that call. The podiatrist said I’d just have to be patient, and I’d probably be better in — you guessed it — two weeks. I asked her what I could do besides rest and elevation and ice and compression, and, after my not accepting “just wait” as an answer, she gave me a referral for physical therapy.

At the time my tentative diagnosis was peroneal tendonosis. The physical therapist, who had helped me through a wrist and knee injury with spectacular results in the past, let me know it would take a few months before I was strong enough to counterbalance the weakness of my tendons. He also said I would feel better, but certain activities like walking on sand or uneven pavement would be uncomfortable for me, probably forever. Tap dancing again wasn’t going to be an option. I went through an entire grieving process (one I still return to; tap dancing is a big deal to me), and I was determined to get better, doing my exercises and icing with religious adherence.

I did not improve. I got a little bit more range of motion in my ankle, to the point where I could rise up on my toes, but that was it. The tens and the sonic therapies felt great immediately after, but the pain would return within a day. I got a mobility scooter to stay off my foot more. My podiatrist gave me a handicapped placard. Sometimes I would have a good day (meaning I could walk about 2,000 steps before I felt the debilitating type of pain — pedometers are useful in this journey), but then I’d have a day where every step made me want to cry. I’d have nights where I lay awake the entire night because of the throbbing pain in my ankle.

I was prescribed anti-inflammatory after anti-inflammatory, but they all did unbearable things to my stomach, and the longest I could take one continuously was two weeks.

My podiatrist sent me to have custom orthotics made. After I adjusted to them, those provided the most relief, but I still couldn’t walk more than 4,000 steps without pain, and some days it was still 2,000 or 200. (For comparison, I should note that before my injury I often walked 10,000 to 15,000 steps per day before exercise.)

After three months of physical therapy, my podiatrist ordered an MRI. Due to insurance problems approving the MRI, it was a month before I got it done and another week before I could get the results. The MRI showed my tendons were no longer inflamed, but that I had Sinus Tarsai Syndrome — basically inflammation and fluid retention inside one of the sockets of the ankle. I was put on a second round of oral steroids (I forgot to mention the first which did no good but did make me unable to sleep for a week) and some strong anti-inflammatories with hopes that during this round, the orthotics would make the steroids more effective (essentially, the theory was I wouldn’t be reinjuring myself while taking them). I was told I would feel great in two weeks, but if I didn’t, I’d get a shot of steroids directly into the sinus tarsai.

I didn’t feel great, so I went back after three weeks and got the shot. That was four days ago, and my ankle now feels the worst it ever has. All my tendons hurt — even ones like my achilles that never hurt before — and my ankle is just as swollen and painful as ever, only worse. I don’t even have my somewhat painless 2,000 steps anymore; every step hurts. My range of motion is limited. I was up all of last night and the night before and the night before that in pain (the night of the shot, the numbing agents did their job, at least). The podiatrist says this is the last treatment option. If it still hurts in a month, I can have another shot, but considering how much pain I’m in right now, that doesn’t seem like a good idea. He said the relief would be immediate, but immediately after the shot, I nearly collapsed because the pain in my foot was so extreme.

I love to travel and explore new cities on foot. I love walking through my own city and hiking through nature (or what passes for it around here). I connect with my family through tap dancing. In my classroom alone, I used to walk four miles per day helping students (now they have to come to me). I used to purposefully park far away so I could get some extra walking in, and now I’m afraid when the handicapped spots are full and I don’t have my scooter. I don’t know if my handicapped placard will be renewed; if I feel like this and it isn’t, life is going to be even harder.

I think what sucks most is that these doctors keep giving me hope, so I haven’t been able to fully adjust to being disabled. It’s always, “You’ll be fine in two weeks,” and even after eight months of no improvement, I still can’t help but hold on to that sliver of hope. I think I’d rather expect to be disabled forever and then be pleasantly surprised when I get better and at least not disappointed when I don’t. I’d still try, but then I wouldn’t have this rollercoaster of emotions that has taken such a toll on me.

I’ve become hyper-aware of accessibility. There’s no way I could get my scooter into the sushi restaurant my husband and I recently visited (how is that ADA compliant?), and some metro stops don’t have elevators. Most sidewalks in my area are compliant, but there’s an entire stretch between here and the library that has no sidewalk at all — just a mile of grass and tree roots — and another high-traffic area that has big posts in the center of the sidewalk so no one in a wheelchair or scooter could go down that street.

This is my new life, and there are a lot of adjustments ahead, many of them things I’m not particularly excited about. I’m going to have to learn to swim if I’m going to get back in shape (that might be fun, at least), and I’m going to have to pick up some new hobbies. Maybe I’ll love them. Every day, though, I see my tap boards and my tap shoes, and I ache.

This entry was posted in Chronic Illness, Disability, Health, Joint Pain, Personal, Rheumatoid Arthritis and tagged , , , , . Bookmark the permalink.

4 Responses to Becoming Disabled

  1. Lori says:

    Hi Mezzie, I was so sad to see this post. I was checking in on you on FPN and saw you’d last visited January. I am your pen pal who has the same Noodler’s invisible ink.

    • Thanks for the letter. I’ll try and get a reply out soon. Sorry I’m slacking!

      • truewordsfoundhere says:

        Forgive me if I doubt you are a slacker. I read your new posts on diet. You have plenty on your mind.

        It’s totally crazy how specialists are so in demand I guess that appointments are 3 months out. Not 2 months or 4 months but 3. Family members have had the exact same wait of 3 months. Although I think one got in a week or two earlier.

      • truewordsfoundhere says:

        Forgive me if I doubt you are a slacker. I read your new posts on diet. You have plenty on your mind.

        It’s totally crazy how specialists are so in demand I guess that appointments are 3 months out. Not 2 months or 4 months but 3. Family members have had the exact same wait of 3 months. Although I think one got in a week or two earlier.

        Now I’m going to have to figure out how this site has made my signature true words found here. Weird.

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