One year ago, on New Year’s Day, I was sitting with friends in their cabin out in Western Massachusetts, talking about the idea for this blog.
Writers are always advised, “Write what you know.” Well, with three decades’ experience, I certainly know about scleroderma. For several months, I’d toyed with the notion of writing about this disease, possibly as a freelance project. Those plans didn’t materialize, but the idea lingered.
Even still, I was unsure about going public online. It was scary. For many years, I’ve remained mostly silent about having scleroderma, sharing only with Al, our daughters and a few close friends. The disease is relatively rare, hard to explain, and just plain strange. I’ve had trouble accepting my health challenges, even as I’ve lived with the daily consequences for so long. Like everyone else, I just want to be healthy.
But, reality is, I have this disease and a gift for words.
So, with encouragement from friends and family, I decided to go ahead and blog about what it’s like to live, day in and day out, with this most complex and mysterious illness.
I didn’t want this blog to be a harangue about my travails, or a litany of symptoms and doctor’s appointments. Rather, my goal was to explore the experience of living with a chronic illness, how it shapes your daily life and relationships, as well as how you perceive yourself.
It’s been quite a journey, writing every week. I’ve become more comfortable and confident, sharing with all of you, my loyal subscribers and readers, what it’s like to live with scleroderma. I’m no longer embarrassed when a stranger asks about my hands. I’ve found greater self-acceptance.
I’ve also been deeply moved when readers have shared their thoughts and taken inspiration from my words. And I’m so appreciative of both the Scleroderma Foundation and the Scleroderma Research Foundation, for their wonderful work toward finding a cure, and for their encouragement and help in sharing some of the content of this blog.
Some of you have asked if I will turn this blog into a book. My answer: I’m working on it. Will let you know as I explore concepts, formats and options. Meanwhile, I plan to keep posting for another year, and see where it leads.
To all of you, my profound thanks for reading, commenting and sharing this blog. Most of all, for caring. My best wishes for a healthy, healing, prosperous and peaceful 2013.
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.
You have touched so many with your words and inspiration as you live your life. Looking forward to hearing about how the book moves forward! Happy and HEALTHY New Year!
Thanks, Deb! Same to you.
It has been a pleasure to read your weekly posts, which have more to do with your attitude about life than simply the facts about scleroderma. You do indeed have a gift with words that defines you, as well as your interests in life. I have learned about the stars, weaving and its soothing effect on the mind and body, and much more. Keep writing and I will happily keep reading.
Thanks, Kathy. I really appreciate your support.
Dear Evie, thank you so much for sharing your thoughts. I agree with Kathy that your blog is about so much more than scleroderma. You and I have been friends for a long time, and yet I feel I have gotten to know you so much better, and gotten so much closer to you, through conversations here. I am very grateful to you for that. Best wishes for a happy, hopeful new year.
Thanks, Pat. I’ve enjoyed our blog conversations, too! Your friendship means a great deal. Best wishes to you, too.
Dear Evelyn,
I came across your blog through the Scleroderma Foundation Web Site as I was just searching for information not too long ago. I immediately logged on and instantly became a fan. I look forward each week to logging on to see what you will share with me in regard to “living with scleroderma”. You have giving me hope.
I was diagnosed with SSc in June 2011. The 1st year was horrible – disease was progressing very quickly outwardly and internally. Started chemo infusion monthly in March 2012, and on November 26h, 2012 had a stem cell transplant because my lungs and heart were showing effects of the disease.
Stem Cell Transplant for Scleroderma is showing some promising effects on slowing down the disease and if I am so fortunate, your words and inspiration will help me live with scleroderma and do the best I can.
Thank you!
Debbie
Thank you, Debbie, for your kind words. You’ve had quite a rough course, but I sincerely hope that your treatments are effective. It sounds like you’re getting state-of-the-art care, which is great, though, I’m sure, exhausting.
I’m very glad to know that my words have given you hope. When I was in the early stages of the disease, I was very scared and felt so vulnerable, especially as my body started changing in so many strange and discomforting ways. There is much more known about the disease today, and more treatment modalities available–more reasons to feel hopeful. My prayer for you is that you respond well to your treatments, have loving support from family and friends, and begin to feel more strength and energy soon.
Best wishes for a year of healing,
Evelyn
Hi Evelyn,
Ever since I met you at Grub Street, I have been a faithful reader of your blog–because you deal with the challenges in your life with inspiring grace and dignity and because indeed, you do have a way with words.
I wish you a New Year of good health and joy.
Yasmin
Hi, Yasmin! So nice to hear from you, and I’m very glad that you’re enjoying the blog. I hope your own writing efforts are going well. Best wishes to you, too, for the New Year!
Evelyn,
I agree with Kathy’s comments above. I enjoy reading your posts. You make me feel like I am not alone on this journey of life with scleroderma.
Thank you for the inspiration and insight. Mary
Thanks, Mary. I’m so glad you find my experiences uplifting. I wish you all the best on your own journey.
My dearest Evelyn I am so thrilled to speak to you. and so glad to have found your blog a while back.
Because you do not just inform me about living with scleroderma, but about living life to the fullest of my capabilities …. And you give me HOPE!!
My name is Paula I am now turning 50 in April. I was diagnosed in 2008 . It was a difficult period before the diagnosis… That was partly finding the right physican.The first 2 years I had were rough we think I have stabilized. Anyway Thank YOU!! Please keep writing !!
Hi, Paula. Thanks so much for writing. I’m very glad to know that you are doing better and that my words are helpful to you! It’s wonderful to hear from you and others I have never met, to know that this blog has such meaning for all of you. Stay well and keep healing!
hi I was diagnosed with scljeroderma an raynauds at 30 yrs old I am 56 now and threw the years my skin turned real hare for about 5 years then it softened up but still very tifght but doesn’t look dark and leathery any more I lost almost all the hair on my body but not my head thanku god for 20 years I was ok except for ulsers on my hands Iand my fingers started curling I actually roofed from 40 to 50 years old at 59 that csummer I stood on top of a Victorian house rightvon the peak put my hands in the air and yelled look at me im 50 years old and I beat scleroderma well at the end of the summer my lungs started thru the next 6 vyears I had major lung surgery with an 80% chance of not making it and god pulled me thru that was july 2011 then feb 2012 I had spinal cord surgery c4 an 5 were bulged an my vertabrey was crumbling they did emergency surgery they got one of the best nero surgeon aroun he showed me the xray thaf showed the vpermanent damage he didn’t now wbat damage till he did vthe surgery but he said there is a good chance I could b paralyzed from the neck down but he would do everything in his power to not let that happen god came thru again the resuts were I lost the signal from my brain too my feet to walk so I went to rehab to learn how to walk heel toe I also vhad bad muscle and nerve damage mybright vside was wors there vis so much more to my story but ill say this 4x iv vbeen to rehab to learn heel toe 2 fime I was on a vent for 8 days and god god me thru the v3rd time vi had major backvsurgery and back I went baqck to learn how to walk 3 vmonths later I fell and broke my hip had to have va full plastic hip replacement back I wentvthr u all this viv had 3 fingers amputated went in a nursing home for speech therapy cause I got asperating pneumonia 2x a month I ended up getting a feeding tube jan 30th an have not aspirated in 7 mths I got out of cthe nursing home april 30th and im back with my dog yogie he is my boy my medical dog my rock anyway ile end with this iv been so greatful but mostvof the the pca”s iv had have been so cruel and my 2 nieces that iv been there all their lives believe these terrible rotten pcas instead of me because myblegs r vbroken theyvthink somethings vwrong vwith my brain well with vall that vis wrong with me they never would vof let me leave cthat vnursing home they told me vmy bmind was strong and aware and I could read people very well now I feel so depressed I wish god took me in the beginning my heart is broken and vi feel so alone the only thing that keeps me going is my boy yogie
Hello Donna,
You’ve had a very hard course with scleroderma. I think you might find some comfort, support and advice on the Scleroderma Foundation’s Inspire Forum. You’ll find a link here: https://www.inspire.com/groups/scleroderma-foundation/. Take care of yourself.