Scleroderma and the Agony of the Feet.

The Scleroderma gift with purchase includes a free facelift, and fat removal- on our feet.

Circulation, pain relief, and proper foot maintenance are key for anyone with feet, not just patients with scleroderma. I have been dying to write a post with this title for years and today I was inspired by a fellow patient who posited a question about her own feet.

My feet began to lose its fat pads in 1999 and around the early 00s, I finally figured out what I could do about it.

In 1999, there was very little on the internet about scleroderma except for worst-case scenarios. The doctors I did have would not have recommendations for long term care and maintenance of anything because they were not used to seeing patients remain active. In fact, in most cases, I was encouraged to remain sedentary but get active again and when I remained active and they saw my condition improve because of my activity, until scleroderma began to damage my feet.

I had given up walking when the fat pads in my feet had deteriorated. I had been seeing a podiatrist at the VA Hospital in Loma Linda, Ca. I’d been seeing them a while and was really not sure why, until this happened. My podiatrist had me fitted with insoles, and I went from using a wheelchair at Disneyland to running through Disneyland. Their aversion to surgery with scleroderma worked to my advantage.

At first, they tried shoes, but the shoes never fit right. So I got shoes I liked and got insoles. The insoles, coupled with gentle exercises like yoga, pedicures, massage, and a high protein diet, work together to keep me mobile.

Pedicures are not vanity. The care and maintenance of our feet is healthcare. An ingrown toenail or corn can take anyone out for weeks at a time. The diligent maintence with pedicrues and visits to my podiatrist are why I still have all ten of my toes. Thank you for coming to my Ted Talk.

I wear flip flops in the shower and around the house. I have a protein shake in the morning for breakfast every day.  Yes, sometimes, I have had a protein shake first thing and then pancakes with my son about an hour later- there’s always room for pancakes, and they are freakin’ delicious.

I was diagnosed in 1994, and now I am getting my MFA in film and TV. The loss of fat pads was a huge setback for me. It’s painful and it sucks and can trigger my depression and major anxiety disorder. My secret to managing pain is Tylenol with Klonopin. It used to be a Vicodin every morning- and it helped most, but it’s nearly impossible to get enough Vicodin to keep around leftovers from a prescription. just in case. but it’s not the end of my activity. I recently discovered brushing my skin, and I brush my feet twice a day.

For those new to podiatry, find a good podiatrist in your area that is all about surgery as a last resort. I have had no surgery or treatments. But age-related foot surgery may happen in the next 10 years for me.

My best shoe recommendations are Merrel and uggs. I wear running shoes with formal gowns. It took some time for me to build my confidence. My brother gave me the best advice. “Remind yourself, I make this look good.”

Never underestimate cowgirl boots. You can get an insole in any shoe. I have tried them in heels- one-inch heels. It’s good for photos, but not longer than 20 minutes at a time for me. I do miss my heels, but it has taught me confidence is sexy.

And when I feel like I don’t got this, I go down rabbit holes like 1980s music videos. By the way: You Look Marvelous.

A written description about the hashtag for this blog, #LaughAtWhatScaresYou