It’s been a year since I was first diagnosed with scleroderma. Actually, it has been decided that I have the form of scleroderma called limited systemic sclerosis (the disease formerly known as CREST). Sounds kind of fraught, huh. That’s because it is; no matter what I think I know about my condition this week, by next week things will probably change. It has been quite a journey this year and now that all the dust has settled from the latest rounds of medical tests I wanted to share my thoughts.
There is no question that the first months after my diagnosis were filled with waves of horror and grief. At first I was just stunned to discover that I might lose the use of my hands. Then it dawned on me that my ability to live independently might become problematic; I needed to make plans to activate a support system for myself at some time in the future. Eventually I found out about the fatal complications and the high mortality rate. Well, shoot. During this time I became a driven knitter: endless pairs of fingerless mitts rolled off my needles.
Yet, it has been a year and I am still here. I sailed through the medical tests and none of the frightening medical complications have manifested themselves. My lungs and heart are fine (huge woohoo!!). My GI tract hasn’t gotten worse. My hands are very swollen and the skin is getting hard (one of the hallmarks of scleroderma is hard skin that forms due to lots of collagen deposition and scarring; my arms and legs are getting hard too), but they work just fine and are actually much better than they should be. My rheumatologist has advised me to knit as much as possible; what a hardship! Other symptoms have improved and I have transitioned onto a battery of drugs that have good track records for improving the quality of life and increasing survival rates in patients with my condition.
So, what have I learned this year? Here is my reflective collection of observations as I look back from the one-year viewpoint:
- People are more important then things. Period.
- ..but they just don’t get chronic conditions and they tend to underestimate the seriousness of conditions that they can’t directly observe. In general people on crutches or using oxygen activate concern, but if you have flaming gastritis, the dizzy wobblies, and your muscles are on strike it’s easy for them to adopt a dismissive attitude. <sigh>
- Medical personnel can be appallingly insensitive. Last week the technician doing my lung scan mentioned that I had a lot of doctors because my disease was really rare; it was important that the doctors get to learn as much from me as possible. Good lord, I wondered. Maybe she was raised by wolves…
- As a corollary of the above observation, I have also discovered that I can’t assume that the medical personnel that I come in contact with actually know about my condition. One nurse thought that “systemic sclerosis” was “multiple sclerosis”. A doctor gave me a pep talk about how other conditions were worse because some of those patients actually can die from their disease. (“Did you want to hit him?” asked my rheumatologist…) One thing I can count on, however, is that they will put me into some scary machine to look for a possible blood clot. What is up with all the blood clot hunts?
- There are few things as empowering as discovering that you won’t live forever. Why sweat the small stuff when you are facing down the long odds? My drugs have a small chance of a fatal brain infection? Whatever. Hand them over, Sparky, I am on board! I never worry about money (bad when I’m in a yarn store) or running out of gas, and I am taking more risks than I was comfortable with before. I mean, what is the worst thing that can happen? This week I figured out how to identify all of the electrical circuits of the house and rewired and installed a new doorbell. I didn’t worry (more than once) about getting knocked on my butt by an electrical mishap. Ha! In my younger days I hated to even change light bulbs…
- No, I won’t be skydiving! I’m not that risk-seeking. 🙂
- It is so much easier to be happy than sad. Plant flowers. Read books. Knit like the wind! Chase bees. Go to lunch with friends (and get dessert!). Watch meteor showers and be sure to catch the Super Blood Moon. Talk to strangers in bookstores and coffee shops. Be kind whenever you can. Never miss an opportunity to take a picture of a great sunset (or a cat). It is really, really easy to be happy, even when you’re in a crazy machine that is looking for blood clots. 🙂
I finally went to my first scleroderma support group meeting a couple of months ago. I’d never met another person with scleroderma; it was a little extreme but good. Like me, they all suffer from cold hands. Unlike me, most of them also talked about the struggle to manage pain in their hands, and I could see that several of them had limited use of their hands because the skin was so tight. Remember all of those fingerless mitts I knitted during the sad times? I think that I have found a home for them.
17 thoughts on “The View from Here: One Year of Scleroderma”
You are very courageous
It’s so easy when you don’t get a choice. I admire those people who are brave, happy, kind and appreciative even as teenagers. I have been so lucky to teach some kids like that. 🙂
Such an amazing and inspiring post! Your second to last paragraph ‘It is so much easier to be happy than sad’ is just beautiful. What a bonus to know that your knitting is a kind of therapy for you, physically as well as mentally. I sometimes say to Hubby that I think I would end up depressed if I couldn’t rest creatively! Your support group sounds interesting, I have looked for a support group for lupus but there isn’t one local to me but I have found a couple of people through blogging and it’s great knowing you are not alone in it. What a great use for all those knitted mitts too 🙂 It sounds such a tough disease and you keep so bright, I really do hope that they can keep it well under control for a long time to come 🙂 x
Thank you. One of the lessons of the support group is that there are so many others dealing with worse issues than I am, and also there are new drugs and treatments on the way. I met a man who had a stem cell transplant which had halted his disease. We live in amazing times.
Wow, that really is amazing, let’s hope things progress really fast with the research 🙂
Your attitude is amazing. To face this, deal with it, live with it and be so impressively positive is a gift. Many many happy days of not sweating the small stuff. You go girl!
I took to blogging as I didn’t have a good local support system. You all help me a lot!
You’re doing a marvelous job. ❤️
I love your philosophy about living with this condition! I have M.E. another of the little known (even by doctors) autoimmune diseases. We share some common symptoms and fears (I will need to be ‘put down’ if I can’t knit and crochet). Positive attitude, self-affirmation and non-judgemental support are so key for people with less visible diseases aren’t they? I hope many people will read this and that you continue to manage well 🙂
Oh, that is hard! People just don’t get chronic fatigue like that. I do sometimes feel frustrated that people can’t empathize with something beyond their experience, even medical people. Thank heavens for knitting!
BTW, my energy is coming up with the latest immunosuppresant drug.
Thank you for this post. I’m glad you get to keep knitting and I hope the people in your support group enjoy the mitts;-).
I just sent the email offering the mitts. I’m taking them to the Saturday meeting.
I love your outlook so, so much! Also, I really benefit from learning about how you live with scleroderma. I’ve taken care of many, many patients in the ICU with scleroderma, but it’s a completely different picture there. I don’t often get a glimpse into the other side of it.
Thank you. Let’s hope I can maintain a sunny attitude if I end up in the ICU! Thank also for the job you do. 🙂
This is a really fantastic post. I love your reflections. Although illness is a burden, it really does teach us to appreciate life so much more. Like you, I worry so much less about the trivialities and the small stuff. I have become much more of a doer (when I am well enough, that is), instead of an anxious observer. I’m gripping life by the horns and living it in the best way I possibly can.
I’m so glad your knitting can continue, and you’re being encouraged to do so. It looks so incredible! Big hugs, and best wishes for a second year free of any disease progression ❤ xxx
There is nothing like a chronic illness (and a limited supply of energy) to make a person refocus priorities. Thank you for the hugs!