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My Scleroderma Story


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#1 Monu

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Posted 05 November 2009 - 09:23 AM

Hi all,

I have had Scleroderma for 6 years, I was diagnosed when I was 26 years old. First symptom that I ever noticed was Raynaud's. The doctors in the begining said it's common, not to worry about. My major problems are 1. tight skin on face, neck and hands 2. Raynaud's - I feel so cold in the air conditioning at work (it seems like I am so allergic to A.C ) 3. Pigmentation on face. I am a very optimistic person and I know one day someone will come up with the answers. Any suggestion that can help me will be great. Thanks a ton!

Monika

#2 Jeannie McClelland

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Posted 05 November 2009 - 11:26 AM

Hi Monika,

Welcome to the Forum!Good grief, do they still have the air conditioning on at work?! Poor you. I don't think any of us with Raynaud's likes A/C (or even winter very much).Your doctors were right, Raynaud's is pretty common. We've got a good section in the Main ISN site on Raynaud's, with not only some good scientific research, but also tips on how to cope with it. Have a read sometime.

Best wishes,


Jeannie McClelland
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#3 Shelley Ensz

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Posted 05 November 2009 - 04:08 PM

Hi Monika,

Welcome to Sclero Forums, we're delighted to have you here!

I'm sorry you have scleroderma. I'm sure your optimistic spirit will be a nice boost for all of us, and look forward to hearing from you more.

How do you cope with air conditioning at work? I know others have had similar problems, and have resorted to everything from space heaters in their cubicle to wearing thermal underwear and dressing in many layers.
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#4 janey

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Posted 06 November 2009 - 04:14 AM

Monika,
I'd like to join the others and welcome you to the Sclero Forums! It sounds like you are having to deal with one of the troublesome symptoms of Sclerodera - Raynaud's! UGH! The link that Jeannie provided is a great link and should give you lots of ideas. The main thing is not to let yourself get cold in the first place. Once you get cold, it's so hard to get warm again. So I wear lots of layers, shoes and socks ALWAYS, gloves (I even have a really thin pair of gloves that I can type with), I never drink or eat anything cold (I even heat my cereal milk in the microwave for 40 seconds every morning), and I drink lots of hot tea. There's nothing that warms your fingers faster than holding a cup of hot tea.

As far as dealing with the disease in general, your optimism is the best thing for you. Just stay positive, eliminate as much stress from your life as possible and have fun!
Janey Willis
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#5 debonair susie

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Posted 06 November 2009 - 05:51 AM

Welcome, Monika!

You have found a "family of folks" who share a common denominator...a desire to share experiences, support and to help one another in a search for information relative to the illnesses we may share.

I am so happy to read that you are optomistic! That, to me, translates this way: You have a good attitude,which will definitely help, where your health is concerned.

I look forward to reading your posts, as well as your presence in our community!
Special Hugs,

Susie Kraft
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#6 amberjolie

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Posted 06 November 2009 - 12:03 PM

Hi Monika!

I'm pretty new here too but welcome! The members here are very supportive and knowledgeable.

Luckily they've turned off the AC at my work (since I live in Canada and we're getting into the colder weather), but what I did was buy a cheap pair of thin gloves that I could wear and still type with (well, not too badly anyway :) ), and then keep my jacket on if needed.

Hope you can persuade someone at your work to at least turn it down. Maybe try the excuse that it'll save the company money if they just turn it down a few degrees. B)

#7 Monu

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Posted 09 November 2009 - 04:32 AM

Thank you all for sharing your knowledge with me. The AC is off at my work heat is on, since we are approaching winters. I live in Canada too, I am glad winters are here. I was asking about AC so I can prepare myself during winter season of how I can cope with AC at work in summers.

No matter how hard I try to stay warm in summers at work, I feel cold all the time. I thought maybe I am allergic to AC or something but I guess its part of Scleroderma. I always wear socks, shoes, jacket, even 3 layers in summers at work but when AC is so high it doesn't really help me. I complained so many times this summers and had the electrician come around and fix it but its an ongoing battle for me. Last time when I called the electrician, he saw me using a small personal heater and told me off for that. He said it will be taken away if I use it again as I could be careless and cause fire etc. Anyway, I am happy for now as its winters.:happy1-by-lisa-volz:

Take care all,

Love,

Monu

#8 janey

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Posted 09 November 2009 - 11:59 AM

WOW - Your AC at work really must be bad! You're the first person I've ever met with Raynaud's that is looking forward to WINTER. If I could afford it I would be one of those people that had a summer home and a winter home. My winter home would be where the average high was above 70 and nights didn't get below 50. Maybe the equator? I hope they solve the problem next summer.
Janey Willis
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International Scleroderma Network (ISN)

#9 dustygal

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Posted 12 November 2009 - 08:23 AM

Dear Monu,

Wow. I remember this battle from my work days. I worked in a building where they could not turn off the AC--it was a total building temperature control system or something, but it did individualize each work area. So, I got a letter from my doctor saying that I HAD to be able to use personal space heaters.

I smile thinking back on that time. It was the most frustrating, annoying, and ironically funny time of my work years. I would turn the space heaters on in the morning, and in about 30 minutes the AC would crank up. I would crank the space heater, and the automatic AC would work harder. My desk was right below the AC. The harder I tried to warm the room, the more I was blasted by the AC.

What a frustration. :( Eventually, I was not able to work for these and other more serious reasons. I never did figure this one out, though.

So, while I cannot offer you a solution, maybe at least you'll get a smile. :lol:

Ideas? Dress in layers. Use gloves with the finger tips cut off so that you can write or type more easily. Remember that your core body temperature is very important in Raynauds, so don't wear light summer clothes just because it is hot outside. (Back to the layers.) Get on an effective treatment regimen through your doctor. And remember, patience and optimism. Sometimes, Raynauds improves. Sometimes, another solution will present itself, such as working from home...

Good luck!

Dusty

#10 Snowbird

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Posted 12 November 2009 - 02:07 PM

Hi Monu

How about a Plan B!! My thought is a nice hot water bottle and a nice clean tea towel to wrap it in. They wouldn't have any reason to take that away from you....and most work places have a kettle!! Keep your feet toasty on that for most of the day with your shoes beside it (in case of fire drill or anything like that which you might have to quickly get your shoes on for!).

I told my boss just today that was my Plan B if the company doctor didn't let me have a heater (I'm lucky though, the doctor did approve one for me with special tip over shut off/temp control thing, etc.)...but I also told my boss I still might bring in a hot water bottle anyway because the doctor said it wouldn't do much for my hands (my boss is so funny...he said he was going to draw a picture of my husband on it... then no one would ask me why I was always hugging it!).

I sure hope you get some luck in getting help with yours....hope you try for it again with a medical route...I don't think a company can refuse if it's medical (I'm in Canada too)!

Keep us updated on how you are making out with the situation :)
Sending good wishes your way!