What I Would Tell My 23 Year-Old Self When I Was First Diagnosed With Scleroderma Part 1

A fellow patient asked me what I would tell my 23 year-old self, if I could go back in time.  Three weeks, and a Cliven Bundy rant later, I found the guts to do it.  I started thinking about it and I decided to stop.  His 15 minutes are over.  There are so many things- and things I need to explain.  Not just to other patients, but to myself.  There are so many things I wish I had done differently, but really there was no way for me or my doctors to know what to expect.  Scleroderma is different for every patient.   

So, this is going to be a series.  It may have different posts nestled in between, but I will make it easy to find by labeling them with the same name, and number them in order. 

I am writing this as though the reader is familiar with scleroderma.  I have a ton of past post explaining my symptoms, and how they were treated.  Don’t use my blog, as a reference for scleroderma.  I am not a doctor, this is a blog, and I only explain symptoms from my perspective.  Please visit Scleroderma Research Foundation and The Scleroderma Foundation and the NIH About Scleroderma page for definitions and terms.  I will usually post links to terms, but if I do not, you can find the proper clinical explanations there.  Thank you for readin, and be sure to follow those organizations to keep up with what’s new with Scleroderma.  

  This is what I would go back and tell my 23 year-old self, what I need to do.  This is not “gospel”.  I am not an expert.  This is what I would have done differently, and how I would encourage myself to keep going.  I still need to encourage myself, just like any “healthy” person who for example; exercises, etc… to stay that way.  

Part 1 

Big changes I wish I had made sooner, rather than later. 

It took me nearly two years to stop smoking.  Before my diagnosis, I moved from San Diego, to La Crosse, Wisconsin.  I continued to smoke after my diagnosis.  It caused my Raynaud’s to worsen, contributed to the loss of the tip of my thumb and slowed healing.  In addition to making my symptoms worse, it made it harder for my ulcers to heal.


I did not see an occupational therapist, until after the tip of my thumb had been lost.  If I had, I may have been able to prevent damage.  Again, that’s may have.  Some symptom hit so fast and hard, intervention will not help.  Never give up on trying.  And if for some reason you stop going, but think about going back to an OT, please do.  Don’t be hard on yourself about stopping.  If you are able to start again, it may encourage you to keep active, and prevent injuries or learn adaptations when change happens.  There is only one guarantee in life: Things will change.   It doesn’t need to be labeled good or bad, it just is.


Exercise or keep exercising.  It would have helped me cope with my stress, as well as keep me stronger.  I find that when I exercise, I have less pain. I have stopped and started again too many times to count.  It will also prevent muscle atrophy and loss of rang of motion.  At one point, any skin showing was shiny, hard and thick.  It hurt to move.  And the damage that was done, still leaves parts of my body in pain, but when I exercise now, everything feels better.  After a rough patch of not exercising, that is when it is hardest to start up again.  Don’t give up.  As long as a doctor says it’s okay for you to exercise, keep moving.  Even if it’s just a short walk around the room.  Ask for a referral to a physical therapist.  


Drink more water.  Stay away from the soda, and stay hydrated.   I’m not saying quit everything.  Have an occasional soda or alcoholic beverage.  Know your limits.  Learn from how you feel after putting these things into your body.  If you feel awful after having them, remember how it made you feel.  At age 43, I do not know how to even order a drink.  I recently had my first Smirnoff Lemonade.  I am very thankful cheap alcohol was not this tasty when I was in college.  I drank one, then went to a different bar and ordered a vodka lemonade, and sent it back because it tasted too much like vodka.  I never said I was the sharpest knife in the drawer, but I did feel better the next day than I would have if I drank three Smirnoff Ice.


So, that’s my first post in the series.  If you have any questions, please leave them in comments, or feel free to message me on Facebook at The Mighty Turtle’s Facebook page.  If you ask medical advise, I will remind you to ask you doctor.  If you would like to know how something specific affected me, or a topic suggestion please don’t hesitate to ask.

On To The Mission At Hand…


In order for occupational therapy to be effective, the patient must be on time, and consistent with appointment attendance. I was not. A trip to my closest VA was a four-hour excursion. An hour one-way, an hour there and an hour back- with no traffic, which would almost never happen- I changed my appointments frequently when I had them with OT, so my therapist limited me to just splinting. And really, driving over two hours for each appointment. Something had to change, and for me, it was my location.

The VA does provide options to see local providers called, “Fee Basis”, but that’s a whole other post.

If You Skipped to the End

I will be posting more about my progress in occupational therapy to restore function to my hands devastated by scleroderma, called sclerodactyly. Today, I will share a milestone: I was able to wear the splint for my right hand through the night, two nights in a row. Woo whoo!


Hand in splint designed by patient's occupational therapist for patient with scleroderma

Notice how the splint is cut around boney prominences to avoid pressure sores.



hand in a splint made by an occupational therapist to gain or maintain range of motion.

Yes, that is nail polish. I’ve been moving, there’s no time for a manicure. Don;t judge me!

















In the pictures, there is some hyperextension going on in the ring and pinky DIP’s or distal interphelangeal joints. The splint will need to be adjusted. It feels comfortable to me, but as I strengthen, that hyperextension will be counterproductive and possibly harmful in the long run. During my fitting appointment, my hands were further back and the DIPs were in line. So, my hands have opened up some and my fingertips have crept toward the end.

Are you receiving occupational therapy?
Please give me a shout if you are. I’d like to know how others are doing. Hand therapy for functionality is not just for scleroderma patients. I meet stroke patients, paralysis patients, RA patients and more. So let me know what goal you are working toward. My goal is to maintain what I have, and gain some functionality. Of course I’m shooting for the stars for being able to play some guitar again, but I will be happy with even a small gain. Post your progress in the comments. Not for me, but for other patients who might read and be encouraged, or learn from your difficulties.



Link Sources:

Scleroderma Research Foundation

Joint Replacement.com

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