Comments on: Salt and Pepper https://livingwithscleroderma.com/salt-and-pepper/ Reflections on the Messy Complexity of Chronicity Tue, 12 Mar 2013 21:07:40 +0000 hourly 1 https://wordpress.org/?v=6.9.4 By: Evelyn Herwitz https://livingwithscleroderma.com/salt-and-pepper/#comment-781 Tue, 12 Mar 2013 21:07:40 +0000 http://www.livingwithscleroderma.com/?p=1375#comment-781 In reply to Karen.

You’re right, Karen, those discounts do help ease the sting!

]]> By: Karen https://livingwithscleroderma.com/salt-and-pepper/#comment-780 Tue, 12 Mar 2013 20:31:23 +0000 http://www.livingwithscleroderma.com/?p=1375#comment-780 In reply to Kathy Pulda.

actually, AARP gives you discounts at age 50 and up! It does hurt the pride, but not the pocketbook. I recently got 25% ($100) off my prescription eyeglasses and I’m 55 !

]]> By: Evelyn Herwitz https://livingwithscleroderma.com/salt-and-pepper/#comment-779 Tue, 12 Mar 2013 18:47:33 +0000 http://www.livingwithscleroderma.com/?p=1375#comment-779 In reply to oona.

Well said, Oona.

]]> By: oona https://livingwithscleroderma.com/salt-and-pepper/#comment-778 Tue, 12 Mar 2013 18:30:41 +0000 http://www.livingwithscleroderma.com/?p=1375#comment-778 First, I am so happy to see people with scleroderma are living long enough to have age misperception be a concern. My Mom died from complications in 1989 when she was 63. At the time , she was considered to be a unique case due to her age and we took some small comfort in knowing that all kinds of folks in the field wanted to see her because her age was so unusual. As far as I remember her, she was brave, kind, loving, encouraging, funny and extraordinarily beautiful to the end.

I write a blog called parentingwithoutparents.wordpress.com be cause I lost her (and three other in-laws) before my daughters were born. I think there is a blog post in all of this. Hopefully, through how she influenced me, my daughters can learn about her.

]]> By: Evelyn Herwitz https://livingwithscleroderma.com/salt-and-pepper/#comment-777 Tue, 12 Mar 2013 17:57:08 +0000 http://www.livingwithscleroderma.com/?p=1375#comment-777 You’ve been through quite an ordeal, Jeannie. How ironic that you don’t “look sick” enough for people to understand you need access to handicapped seating! Looks can be deceiving in so many ways. I hope you continue to get stronger and fully back on your feet.

]]> By: Jeannie https://livingwithscleroderma.com/salt-and-pepper/#comment-776 Tue, 12 Mar 2013 17:45:03 +0000 http://www.livingwithscleroderma.com/?p=1375#comment-776 I say take the discounts!! If they want to insult you then let it cost them a couple of dollars 🙂 I had multiple organ failure due to Scleroderma a few years ago, and the doctors said that if I came through I would need 24 hour care. That thankfully turned out not to be the case, however my muscled atrophied severely after being in a hospital and then a nursing home for a total of 2 1/2 months and I’m very unsteady on my feet. My weight dropped to 89 pounds but I have gained 40 pounds and pretty much look the way I did before my “episode”. My biggest problem is that I don’t “look sick”. I’ve been confronted while parking in handicapped spots, and was once accosted by a drunk amputee while sitting in the handicapped section at a concert, berating me for taking up space in the handicapped section. I’ve gotten the stink eye for sitting in the handicapped section on the bus. People, like in your case, need to stop making assumptions about us based on the way we look.

]]> By: Ana Luisa Monge-Naranjo https://livingwithscleroderma.com/salt-and-pepper/#comment-775 Tue, 12 Mar 2013 17:28:48 +0000 http://www.livingwithscleroderma.com/?p=1375#comment-775 In reply to Evelyn Herwitz.

Thank you!

]]> By: Evelyn Herwitz https://livingwithscleroderma.com/salt-and-pepper/#comment-774 Tue, 12 Mar 2013 17:15:24 +0000 http://www.livingwithscleroderma.com/?p=1375#comment-774 In reply to Ana Luisa Monge-Naranjo.

Hi Ana Luisa,

Thank you! I’m so glad you enjoy my blog. I can’t speak to whether scleroderma worsens sunken eyes. This has not been my experience, but the disease is so unique in each individual. You might ask your dermatologist about this. What happened to me was a general tightening of the skin on my face during the active phase of the disease. At its worst, I began to have some discomfort blinking. But this eventually reversed itself, thanks, I believe, to the medications I was on at the time.

However it manifests, scleroderma, when it affects the face, does tend to age you prematurely. That is one of the most difficult aspects of the disease, emotionally. I’ve wrestled with this for years, trying to come to terms with how my appearance has changed. I’ve made my peace, somewhat, but not entirely. I think the biggest frustration is how you have absolutely no control over it all, and the mask-like transformation can be quite stark, as well as uncomfortable. Skin can loosen again with time, but again, this varies from individual to individual.

I hope you are doing well, managing your disease and that you have good care. Thank you for sharing.

]]> By: Ana Luisa Monge-Naranjo https://livingwithscleroderma.com/salt-and-pepper/#comment-772 Tue, 12 Mar 2013 16:51:01 +0000 http://www.livingwithscleroderma.com/?p=1375#comment-772 Hello Evelyn,
Let me introduce myself first. I’m from Costa Rica, was diagnosed with CREST Syndrome almost two years ago, and I’m 47 years-old. I found you through the Schleroderma Foundation. I love your posts! I’d like to ask you if this disease worsens the sunken eyes. I’ve always had sunken eyes, but they have become more sunken in the last years, and I’m sure they make me look older. I don’t want to dye my hair yet (I have some white hairs now), so this issue of “looking older” is starting to be increasinly important for me.

]]> By: Evelyn Herwitz https://livingwithscleroderma.com/salt-and-pepper/#comment-769 Tue, 12 Mar 2013 14:48:29 +0000 http://www.livingwithscleroderma.com/?p=1375#comment-769 In reply to Allen Katzoff.

HA!

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