Buying a new pair of shoes used to be one of my favorite things to do. The unsightly red spots, telangiectasia, which are generously sprinkled all over my body, limit the clothing I choose to wear. Anything backless, strapless, sleeveless, scoop-necked, or low-cut is immediately ruled out. Being that I am not by nature a conservative person, or Amish, having scleroderma has sort of sucked the joy out of shopping for clothes. But with shoes, the sky was the limit.
Though scleroderma impacted nearly every aspect of my appearance since my diagnosis at age 10, it had thankfully left my feet alone. High heels, platform shoes, open-toed sandals, flip-flops … no shoe was out of bounds for me. Aside from adhering to a reasonable budget, nothing stood between me and whatever shoes my heart desired.
That all changed in April 2006. After the healthy birth of my daughter, I suffered grave complications. What began as an infection, spiraled out of control and led to a 218-day hospital stay. During that time I endured eight major surgeries, the loss of two organs, ICU psychosis, and temporary paralysis from the neck down.
I’m thankful to report that 10 years later, I’ve made a remarkable recovery. After years of physical, occupational, speech and respiratory therapy, people see only a slight limp when I walk. What they don’t see is the searing pain, neuropathy, that was caused by severe foot-drop and massive deconditioning. In addition to neuropathy, my toes never fully uncurled after my long stint in the ICU. This leaves me highly susceptible to developing calcium deposits on all 10 toes. Although, my feet are in far better shape than doctors initially predicted, my shoe-shopping sprees died along with the nerves in my feet.
I know, I know — this is a small price to pay considering what could have been. But, man, do I miss shopping for the perfect pair of pumps! I long for the days when I used to walk into any shoe store, select a pair of shoes, try them on and buy them. The whole process could take under 30 minutes.
Now, getting a new pair of shoes means adhering to the following protocol:
Step 1: During my monthly visit to the podiatrist, I ask him to write a prescription for me to see my certified pedorthist.
Step 2: Visit my pedorthist so she can examine my feet, study my gait (this involves me walking on paper with ink pads beneath them so she can see where extra pressure is being placed), make plaster molds of my feet, and determine which shoe might best meet my needs.
Step 3: Flip through the orthopedic shoe catalogue and try to select a pair of shoes that might not make me look 90-years-old.
Step 4: Wait to get a call from the pedorthist’s office letting me know my special order shoes have arrived.
Step 5: Go back to my pedorthist, try on the shoes and determine if they will work. If they will, my pedorthist will customize special inserts for both shoes to accommodate my foot-drop and other issues she’s discovered by examining my gait and foot molds. If they won’t work, we go back to step 2.
Step 6: Wait to get another phone call from the pedorthist’s office letting me know my custom inserts are ready.
Step 7: Go back to the pedorthist’s office and try on the new shoes with the new inserts. If all the stars align, I walk out with a pair of ugly orthopedic shoes that my pre-2006 self wouldn’t have been caught dead wearing.
I fully recognize there are fates far worse than having to wear orthopedic shoes prematurely. I also acknowledge the fact that I am walking out with a new pair of shoes. The keyword here is walking, something doctors told me I might never do again. I’m also quite fortunate to have found an incredible podiatrist and pedorthist, both of whom are both experts in their fields and lovely people.
When I look at my shoes through the lens of gratitude, I know I’ve got nothing to complain about. But when I look at those same shoes and consider how much they cost, I woefully mourn the fact that with the money I spent on the world’s ugliest shoes, I could have a closet full of Pradas in every style and color!
[Learn more about Lisa’s life with scleroderma by visiting her blog: Comfortable in My Thick Skin.]
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