Here it is again: World Scleroderma Day.
I used to be a high school biology teacher before I became a scleroderma patient, and I took my students on field trips sometimes. We would all pile on the bus and off we went on one adventure or another: into the mountains for an ecological assessment, or to the Natural History Museum for an anatomy lesson, or a visit to a biotechnology center, or even off for the weekend to study for the Biology AP Exam. It was always exciting, exhausting, sometimes joyful, often a little overwhelming, and at the heart, an educational experience.
Lately I have been thinking about my illness as a ride on a little teal-colored school bus with a crazy rainbow striped zebra behind the wheel. That dang scleroderma zebra is careening down the road on its way to an unknown destination just over the horizon, and would you believe it, he keeps stopping to pick up more passengers along the way.
When the bus stopped for me, and I stupidly jumped on board, I only had a few symptoms. I had some trouble swallowing sometimes. I had GERD. I suddenly lost circulation in my fingers if I got cold. Speaking of my fingers, they were pretty fat and puffy. I had lots of red blotches on my face, and the skin was pulling tight. It was hard to open my mouth wide…
Still, I was feeling pretty hopeful as I jumped onto the bus. “This will be fun!” chortled the scleroderma zebra. Bad zebra, bad!! Before I knew what was happening, that dang striped miscreant had pulled the bus over, opened the door, and couple of little demon passengers had hopped on board: kidney disease and gastric complications. What kind of an outing is this… have you ever heard a zebra laugh?
Bouncing down the road, suddenly screeching to a halt periodically to pick up a new passenger, the zebra continued the crazy outing in the little teal school bus. The little demon passengers kept piling into the bus, and those little monsters even started to sing “the wheels on the bus go round and round…” while laughing and clapping. What kind of a field trip is this, anyways?????
The demons all wore little nametags:
- Gastroparesis
- Pericardial effusion
- Chronic respiratory failure
- Diastolic dysfunction
- Pulmonary Arterial Hypertension
- Interstitial Lung Disease
- Heart Failure with preserved ejection fraction
“STOP THE BUS!!!!” I shouted at the zebra! “I absolutely did not sign up for all of this sh*t!!!!” Nope. Evidently there is no stopping the bus. Ten years on the road, and we are still on our outing. Somehow some extra demons that don’t even wear nametags snuck onto the bus, but they are certainly annoying as they are making all my tendons hurt and what is up with all this edema!!!! Did I mention the fatigue? Always, always there is fatigue. That fatigue demon is sitting on top of the bus blowing raspberries at all the other people on the road…
It has now been a decade for me on the little teal school bus: always exciting, exhausting, sometimes joyful, often a little overwhelming, and at the heart, an educational experience.
I learned about prioritizing and not worrying about things that haven’t happened yet. I learned to advocate for myself, and I have maneuvered myself into the care of some great doctors. I have learned to build for myself a network of supporters. I pretty much have lost interest in making money, but I’m highly motivated to help others. I’m keeping notebooks and collecting souvenirs while on this field trip, and to be frank, it is the outing of a lifetime. Believe it or not, I’m now singing along with the little demons on the bus with me…
The wheels of the bus go round and round… and the zebra is still laughing its head off… and I’m okay.
Happy World Scleroderma Day.
Note: Scleroderma (systemic sclerosis) is a rare autoimmune disease that is chronic, progressive, and often fatal. It has three main hallmarks: damage to blood vessels, the development of autoantibodies, and subsequent scarring of tissues and organs. Right now, while there are many excellent treatments emerging to handle the serious complications due to the underlying disease (like my pulmonary arterial hypertension and interstitial lung disease), there is no cure. You can learn more about scleroderma and systemic sclerosis in the links below.
Yarn, Books & Roses 
10 years, and you are doing well. Your attitude is amazing! I have another friend with scleroderma, I think she’s also around the 10 year mark. Ups and downs, but her attitude is great, and currently things are pretty stable.
Silly zebras!
Hugs to your friend. When I was first diagnosed the 10-year survival rate was about 70%, but with new drugs things are much better now. I’m also pretty stable right now (other than my heart… it gets checked on next month to see what is up with it…) so that is good. A great attitude is just what is called for in situations like ours.
You’re OK, Marilyn ? – you’re bloody MARVELLOUS.
So very well and entertainingly described
Some of those demons need to be kicked off that bus. There are rules about overcrowding.
Seriously, there should be a strict limit!! Nope. Those little buggers just keep piling on. When I see the list of diagnosed conditions in my chart I kind of just burst out laughing these days; the fear factor drops as the demons keep piling in. The bus is now absolutely packed!! I met someone this spring who was SO UPSET about getting diagnosed with hypertension and what that meant in terms of having to change his diet, lifestyle, and maybe even needing medication. Another moment of struggling to not burst out laughing… but one thing can be really frightening because of the impact on your life and how you view yourself. After a while you just roll with the punches and work the problem.
The good news is that some of the new drugs that I’ve been placed on are starting to make a huge difference and the party on the bus is dying down a little.
That’s wonderful news!
Your positive, and humorous, attitude is quite inspiring.
Thank you. In situations like mine, it is best to embrace the hilarious.
Thank you for sharing your knowledge and your inspiring attitude! I am so glad that things are getting better, little by little, with your excellent caregivers and some new medications.
I certainly am in a much better place than I was two years ago. I am benefiting big time from drugs that were developed in just the last 5 years, and there are more in the pipeline.
Awesome developments!