Day 25 of NHPBM: Advice to Newly Diagnosed Scleroderma Patients.

Day 25 NHPBM

Mission: Not Impossible.

Because scleroderma is different for everyone, my advice can apply to patients with sarcoidosis or other chronic illnesses.  We may have different diagnoses, but we all share the experience of loss.    I hate saying, “here’s some advice,” but I will write about my experience and what has helped me.  This can apply to the newly diagnosed and the not newly diagnosed.  It took me eleven years into my diagnosis to try exercising.  I went from barely able to walk, to thriving (mostly).  My point is, it’s never to late.

I would like to emphasize that trying to stop the progression of a chronic illnesses like scleroderma, is like trying to stop a freight train.  I have used this metaphor before, but for those who haven’t hear it yet, here is is:

We can slow down the freight train, but until there is a cure we will not be able to stop it.  There are times when the train speeds up and goes to fast to do anything.   When that happens, we need to jump on the front of the train, Polar Express style,  watch where the train is going as we ride out the acceleration until things become manageable.  The trick is to survive the ride.  

How to Ride the Freight Train
We can ride out the symptoms by taking meds as needed, pay attention to symptoms of depression and get treatment for them.  If you haven’t already, incorporate deep breathing, meditation prayer or all of those.  When in pain and symptoms are accelerating, our mission is to survive.  Its hard to be hopeful the flare will get better.  There may be damage done to internal organs and an ability or two  may be lost, and we may need to learn to adapt.

If I could start again in 1994, I would have adopted a yoga practice.  Meds help, but the greatest tool that makes my meds and prevention effective, is yoga.

Before Flying, We Must Learn to Fall
Moving when in pain can help alleviate it, but not without training.  Before starting anything, talk with your doctor about gentle exercise, then ask for a referral to a physical therapist who will evaluate your movement abilities and teach you tips like how to fall.

One day, I missed the last step on my staircase and fell.  What I learned from my physical therapist, taught me how to fall and prevented a possible grave injury that day.  LEARN HOW TO FALL.  Stunt people learn to do it.  Once you learn it will become a natural reflex.  I learned in 1999 after I fell from the top of a flight of stairs and sustained a head injury that nearly killed me.   I had to be relearn balance and I fall every now and then.

It’s not easy to move while in pain.  There are days I only do a tiny bit of yoga, but that tiny bit helps.  I started  yoga in 2005, after years of resting and a great deal of loss of range of motion.  I had trouble breathing and my anxiety was off the charts.   Since learning yoga and deep breathing, I have maintained my lung capacity and I can move easier.  I stopped doing yoga regularly for almost a year in 2012.  I have started doing it daily and I can feel the difference.  I need fewer pain meds- if any at all and my anxiety is under control without sedatives.  I actually keep a stock of pain and anxiety meds because I have earned an infection in my fingers can happen at any time.  Getting the pain under control makes it easier to clean wounds and by cleaning them, I heal faster.  Exercise also increases circulation.  More blood to the wound = nutrition to cells and promotes healing.

Define Exercise
Before learning deep breathing techniques, I would think, “Exercise, are you nuts?”  Deep breathing exercises the muscles in the abdomen and chest.  By lying around and not expanding my lungs, my muscles tightened and nearly atrophied.  Getting them moving was hard, but the more deep breathing I did, the better I could breathe.  So, I classify deep breathing as exercise.  When I feel like I can’t move and I am sitting on the couch, I will take deep breaths.  I find now that when I need to move around while in pain, it’s easier because my lungs do not have to work harder to get air.  Deep breathing is exercise.  Do it.  Don’t beat yourself up if it’s hard.  Acknowledge it’s hard and give yourself kudos when you do.  Tell yourself it will get easier.

I love it because although my downward facing dog is me sitting on a step stool holding on to push up helpers unable to lift my own weight, it’s my version of downward dog.  I’m trying and doing.  When I can, I work one on one with Ashley Fiala, at Living Yoga in Temecula.  With her assistance, I can nearly do the pose.  Because my hands are contracted, I am not able to lay them flat, but I adapt by holding a chair and Ashley helps me get to the pose with support.  Every time I see her, I am amazed of what I am capable of.

Getting Started
If you have never done yoga before, find a yoga studio in your area and learn in a class.  When I started, my first class was an hour and a half Kundalini Yoga class.  I spoke with the yogi Atmah Kalsa before attending.  Throughout the class, she would help me by propping up blankets for me and eventually, I brought my own step stool to help.  When I attended Anusara yoga at Yoga Living, the instructor did the same.  It helped.  One one one instruction can be expensive, but if you can swing just one hour, you will learn enough to help in classes.

Staying in Practice
It’s tough for me to stay consistent.  By nature, I am easily distracted and if I find a project, I throw myself into it and other things get ignored.  I can talk myself into and out of anything.  It’s a blessing and a curse.  I am the master of, “It can wait until tomorrow.”  The truth is, tomorrow is always tomorrow.  The time is now, and I need to remind myself to be in the present or nothing gets done.  The upside: My fingers are messed up; but I have convinced myself that someday, I will be able to open my hands again.  Yes, it’s may sound delusional, but it will get me to my yoga mat.  Once I am on my mat and things get hard; I talk myself into just doing one more exercise, one more second in that pose, one more breath of fire, one more leg lift- you get the point.

It’s hard to get started, its hard to do and it’s hard to maintain.  Anything worth having isn’t always easy.  If we just “show up” and talk ourselves into the next step to keep moving, it can be done.  It’s impossible to stop a freight train, but it can be slowed down.  Our mission is not impossible.  Choose the mission; you won’t be dis-avowed, but there is less of a chance of self destruction.  I will apologize now for the following picture of me in shorts.


Downward facing dog adapted for scleroderma:  Push-up bars: because my hands will not straighten out.  That is also the straightest I can get my arms- my elbows used to be worse.  I use a step-stool because my legs are not yet flexible enough to bend to sit on my heels -yet.  T-shirt courtesy of Bounce to a Cure & X-Pogo.  My apologies for me in shorts.  Brain bleach not included.

Helpful Links:

The Scleroderma Research Foundation

Yoga Assisted Downward Facing Dog (I cannot hold my own weight yet, so my goal is to strengthen my arms.  This video is a great example of how it’s done with assistance.  Do not try this alone! Get approval from your physician before even walking into a yoga studio and  of course, seek help from a yogi.  As always, beware of anyone selling products to “cure” your condition.

Living Yoga my local Yoga Studio

My one on one yoga instructor is Ashley Fiala   Watch this video of her teaching a class.  It’s a great example of how a good yoga instructor pays attention to students in her class by walking around and checking her student’s form.

My Yoga Meditation Teacher Yoga Dan

Power Yoga Evolution Studio in Andover MA

An excellent post about yoga by Chris Dean of Life Your Way

Bounce to a Cure


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