My Story:

Terry Good

The pain that comes with PC ironically has a positive side

I will be 69 years old on December 3 of this year. Except for a few months during my infancy, I have experienced PC pain every day of my entire life, including:

– Blistering of my feet from the shearing pressures of walking (at times, up to 80% blistering of the surfaces of my feet to include the ever present secondary infections).
– Wearing shoes has always been painful. Over the years I found I need a hard sole shoe that provided me with an even landing surface for my feet as I walk. The hard sole minimizes the shearing action and the resulting blistering friction. I usually opt for wide width and often a size larger than indicated, to make room for padded inner soles and perhaps two pairs of socks.
– Infection to my nails resulting from trauma to the nail (severe pain lasting until I would lose the nail).
Varying levels of pain from medical procedures:
-Injections of antibiotic (typically penicillin and often a thick version with extreme pain during injection).
– Draining of fluids from infected nails and blister sites (often painful, but worth it because of the immediate relief).
– The use of painful solutions that included alcohol and other stinging/burning substances (usually aimed at “killing the opportunistic bacteria”).
– At age 9, my parents decided to opt for surgical removal of my nails. I experienced severe pain during the weeks of recovery. The procedure resulted in approximately 60% removal of the nail beds on my fingers and about 90% on my toes. A significant improvement, though I continued to experience infected nails when they were traumatized.
– At age 14, my family physician was allowed to use a targeted heat device to treat (burn) a one half inch diameter section of my left foot. The local anesthesia was not very effective and the pain was severe. Recovery from the “burn site” was long and painful.
The psychological and social implications that come with PC have been significant and painful for me:
– Embarrassment
– “Unsightly nails” (I developed a habit of clinching my fingers to hide my nails)
– “Walking with a limp”
– Avoiding interaction with my friends and peers

The pain that comes with PC ironically has a positive side. I believe one who endures the pain of PC is a very brave person with a unique and valuable character. About 25 years ago, one of my doctors paid me a high compliment when she said “you have learned to manage one of the most difficult diseases we know.” A PC’er should also note that your family and friends are the absolute best. They accept you as the person you are. PC is simply part of who I am!

PCers have a great attitude

It is "do all you can, as long as you can despite the pain!" We definitely cheer that approach. However, stories from young PCers (those age 12 and under) who have mild plantar pain and few cysts or other PC symptoms may seem to show you can just be 'tougher than PC.'  That approach is not the most effective, since when full grown, PC pain will increase to the point that being tough isn't enough. It's important that youth develop and find 'off the feet' activities and skills. Most PCers are very, very high achievers and find a way to excel although PC pain has a definite impact on quality of life. That's a whole story in itself!

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