I didn’t realize it at the time, but at the end of December, I wrote my 700th post on this site. I launched Living with Scleroderma on January 3, 2012, and have been posting nearly every week since, with time off for good behavior when on vacation.
That’s a lot of posts. While there always seems to be plenty to write about all the daily challenges of this complex disease, my goal since the beginning has been to emphasize the living over the scleroderma. Whether it is this autoimmune disease or another chronic condition, the biggest challenge of all is to understand that you are much more than your diagnosis. It is a part of you, certainly, and commands all too much attention some days. But I strive not to let my scleroderma define me.
Writing about it weekly, a good discipline in itself, has really helped me to maintain that perspective. Most days, even as I’ll curse like a sailor when I accidentally bang one of my fingers, right where the calcium is pushing just below the skin or at the jagged bone at the tip of my resorbed digits, I don’t really think about it. Scleroderma is a demanding presence in my life, but it doesn’t own me.
Because I can’t let it.
And so, Dear Reader, some of whom have been with me for the past 14 years, thanks for your interest, your comments, and your encouragement. May we all live the fullest lives we are able. Each day is a gift.
Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.
Image: Beth Macdonald
Enjoy your blogs! I was wondering what you use to cover your hands when your fingers are bandaged…in cold weather, mittens or large gloves and to protect your bandages from water
during the day.
Yes, each day is a gift.
Thanks, Janet! I have insulated mittens and wool gloves, but honestly, when I have a lot of bandages, they are hard to use. This winter I’ve been using my fleece wrist warmers, which have a thumb hole, to cover most of my fingers, and keep my hands in pockets of my very warm down coat when I’m walking. Not ideal, but it has been the most comfortable solution. Another option I’ve tried in the past are gloves that are open at the finger tips and have a mitten covering that you can flip over them. My problem is that one finger on each hand is fused by pins, on the left at a 90 degree angle, so even flexible knit gloves are hard to wear.
As to protecting my bandages, which are fabric, from water, I only use hand sanitizer, and I wear disposable latex or rubber gloves when cooking, doing dishes, or other tasks which could wet my hands.
Hope this helps! Be well.
Thanks for your reply! Please let me know about your new book. I love historical fiction.
Janet Blumenshine
Thanks, Janet! Will do! 🙂
Each day is a gift, for sure. Hats off to you, Evie.
Thanks, Pat. 🙂
Love and Hugs
🙂
Thank you for sharing your journey with us. There are moments when I am frustrated by the challenges scleroderma throws my way and your positive-yet- realistic attitude really helps me to find the balance I need.
Thanks, Dana! You just made my day! Be well. 🙂