Comments on: Grateful https://livingwithscleroderma.com/grateful/ Reflections on the Messy Complexity of Chronicity Tue, 22 Sep 2015 19:33:49 +0000 hourly 1 https://wordpress.org/?v=7.0.4 By: Evelyn Herwitz https://livingwithscleroderma.com/grateful/#comment-43560 Tue, 22 Sep 2015 19:33:49 +0000 http://www.livingwithscleroderma.com/?p=1215#comment-43560 In reply to donna duyon.

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.

]]> By: donna duyon https://livingwithscleroderma.com/grateful/#comment-40387 Sat, 29 Aug 2015 22:04:57 +0000 http://www.livingwithscleroderma.com/?p=1215#comment-40387 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

]]> By: Evelyn Herwitz https://livingwithscleroderma.com/grateful/#comment-521 Wed, 02 Jan 2013 03:20:54 +0000 http://www.livingwithscleroderma.com/?p=1215#comment-521 In reply to Paula osterloh.

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!

]]> By: Paula osterloh https://livingwithscleroderma.com/grateful/#comment-520 Wed, 02 Jan 2013 03:03:25 +0000 http://www.livingwithscleroderma.com/?p=1215#comment-520 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 !!

]]> By: Evelyn Herwitz https://livingwithscleroderma.com/grateful/#comment-519 Wed, 02 Jan 2013 01:45:32 +0000 http://www.livingwithscleroderma.com/?p=1215#comment-519 In reply to Mary.

Thanks, Mary. I’m so glad you find my experiences uplifting. I wish you all the best on your own journey.

]]> By: Mary https://livingwithscleroderma.com/grateful/#comment-518 Wed, 02 Jan 2013 01:21:20 +0000 http://www.livingwithscleroderma.com/?p=1215#comment-518 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

]]> By: Evelyn Herwitz https://livingwithscleroderma.com/grateful/#comment-517 Tue, 01 Jan 2013 23:45:42 +0000 http://www.livingwithscleroderma.com/?p=1215#comment-517 In reply to 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!

]]> By: Evelyn Herwitz https://livingwithscleroderma.com/grateful/#comment-516 Tue, 01 Jan 2013 23:43:30 +0000 http://www.livingwithscleroderma.com/?p=1215#comment-516 In reply to Debbie Burns.

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

]]> By: Yasmin https://livingwithscleroderma.com/grateful/#comment-515 Tue, 01 Jan 2013 22:50:27 +0000 http://www.livingwithscleroderma.com/?p=1215#comment-515 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

]]> By: Debbie Burns https://livingwithscleroderma.com/grateful/#comment-514 Tue, 01 Jan 2013 22:26:55 +0000 http://www.livingwithscleroderma.com/?p=1215#comment-514 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

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