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.

In 1999, there was very little on the internet about scleroderma except for worst-case scenarios. Recommendations for long term care and maintenance of anything scleroderma were scarce, except the phrase, “get your affairs in order”.

Few doctors had seen active scleroderma patients. Thanks to research and effective treatment, the active scleroderma patient is no longer a myth.

Back then, I ignored the sedentary advice and I became active. When I remained active, my condition improved until a new symptom would pop up, like the problems with my feet. The issue with my feet sucked, but I learned valuable troubleshooting skills I revisit today when something new pops up.

Over time, the fat pads on my feet had deteriorated. It’s common in scleroderma. It hurt and I briefly gave up walking. I get my healthcare through the VA Healthcare System and I had been seeing podiatry specialists for years. When my feet went wrong, I understood why I had consistently been seeing podiatry.

I was fitted with custom insoles and I went from using a wheelchair at Disneyland to running through Disneyland. The insoles, coupled with gentle exercises like yoga, pedicures, massage, and a high protein diet, continue to work together to keep me mobile.

But with all of that help, the obstacle of depression crossed my path, often. The cause of my depression is usually grief from the loss of something or progression. Because these problems are in the long term, unresolved my depression must be managed, because it will never go away.

The first time I acknowledged my depression was a problem it was 1999 when my weight became 98lbs when fully dressed and wearing boots.

Scleroderma patients are unique, however, scleroderma patients are not alone when it comes to depression. As with any progressive chronic condition, patients constantly cycle the stages of grief. (Kübler-Ross Model).

Grief used to be associated only with death, but every loss has some level of grief from 0 to 100. I use Kubler-Ross’ example because it is the one that I am most familiar with. In my case, I use denial as a coping mechanism, but prolonged denial for me leads to depression or anxiety.

Depression hits me like a ton of bricks and I gravitate to inactivity. During those times of inactivity, that’s when things get worse mentally and physically. Currently, I am a few months out of a depression episode. Thanks to years of therapy, meditation skills and continued use of antidepressants, I have created my lifeline. It’s a couple of family members and a couple of close friends to whom I reach out to when I have depression or anxiety flares.

The thing is, with a chronic condition, there is no solution to the problem because the problem never leaves. I’m constantly facing current problems along with managing the fallout from past problems.

For me, denial is like both weather and climate: Trends in climate allow preparation for stormy weather. One can get through a storm, but without preparation, one storm can create catastrophic long term damage. Just like denial will get me through the day, but without preparation for dealing with denial, catastrophic long term damage is a guarantee.

If you get one thing from this post, it’s that there will be grief and pampering our feet is not a luxury, it’s a necessity. And that some necessities like pedicures help with emotional issues in addition to the physical health benefits. It helps me regain my power.

If you’re a scleroderma patient, something weird may or may not be happening to your feet. This blogpost won’t give you a diagnosis, but this blogpost does offer some things to do to find relief or prevent injury.

Here are some tips by Scleroderma & Raynaud’s UK (Twitter: @WeAreSRUK)
->> https://www.sruk.co.uk/raynauds/managing-raynauds/foot-conditions/
This organization bases it’s information on research.

Here are some things that work for me.
This is based on my personal experience and it somes with a warning:

Steve Martin in Dorthy Rotten Scoundrels wearing an eyepatch holding a fork that's corked in the eyepatch.
Don’t be this guy.

As always, please check with your physician before trying anything. I am not a doctor. I have a degree in psychology which means I am barely qualified to advise you not to stick a fork into your eye.
– Karen Vasquez  

Here are some things that work for me.
This is based on my personal experience.

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.

The loss of fat pads was a huge setback for me. It’s painful and it sucks and it did 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. He told me, “Remind yourself, I make this look good.”

An insole can go into almost 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. <- follow that link for an old-timey laugh.

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