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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 truman

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Posted 12 August 2007 - 12:40 PM

How does everyone deal with the "sick" days due to the condition we have. I've tried to use sick days as 1/2 days when I get struck with IBS. Sometimes the workload makes my arm so swollen and red, I can't wait until I can get home and put ice or the heating pad on it. My feet get so swollen, it's impossible to walk and then phebilitis sets in for days. I asked HR about my sick days, and was told in my employment capacity, I had unlimited, but after 7 days they will reprimand you. So far, I've had five this year and use my vacation and personal days (1/2 days if possible).

Also, my company cannot regulate the air conditioning and heating in the bldg. after numerous attempts by repair companies. Winter and summer months require the employees to wear winter coats throughout the year. "Normal" people in the office are complaining they are "freezing" so you know what I'm going through. I've complained to HR I have Raynaud's and that my feet and hands are numb, but we are not allowed space heaters. I've convicned them to place cardboard of the vent in my office, but it's not enough. Presently I have an ulcer on my finger and big toe that will not heal and have to go outside to warm up several times during the day. What are my rights?

Tru
Tru

It is what it is...........

#2 peanut

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Posted 12 August 2007 - 04:31 PM

I don't know if you're in the states but a chronic condition like scleroderma qualifies you for FMLA leave - unpaid protected leave from your company. Ask HR about it.

Also, get a large heating pad from the grocery store and a small blanket for your desk. Even a small piece of fleece from a fabric store will work. I even wore slippers, but my boss didn't care.

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#3 Kamlesh

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Posted 12 August 2007 - 05:59 PM

Truman,

Have you discussed with your HR? I also work full time and I have Scleroderma, Reynaud, depression and severe sleep disorder. My HR discussed with me various options available to me including flexible work hours, sick days, short term and long term disability.

I do not know what labor regulations are in your area, here in California; employers are required to provide reasonable accommodation including work place and work hours.

My manager knows that due to sleep disorder, I rarely come to work before 9:30 AM. I make sure my work is completed in a timely manner. Many times I have to attend conference calls 5AM or 6 AM, and I just skip my sleep medications and choose not to sleep at all.

I understand it is not easy to maintain full time job with this disease, but you need to find a compromise.
Kind regards,

Kamlesh


#4 Sweet

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Posted 13 August 2007 - 04:16 PM

Hi Tru,

Peanut's suggestion of using FMLA, (Family Medical Leave Act) is an excellent idea. Prior to being self employed I used it for 2 years. There is a bit of paperwork that goes with it, but it's not bad and it protects your job. Meaning they can't fire you saying "You are gone too much" once all of this paperwork is in place.

Let us know what you decide to do.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)