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Raynaud's at work


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#1 KarenL

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Posted 12 January 2009 - 02:45 PM

Hi everyone!

I have started nursing school and am so excited! Things are going well, and I find that in addition to my 'older' age being helpful in the learning environment, I am already ahead of the game for having spent so much time in hospitals and in researching my own illnesses. The silver lining if you will.

One problem has come up. The uniform is freezing ice cold. It is the typical white thin cotton scrubs, short sleeve with a long sleeve thin cotton jacket on top. NOT warm enough for me in a million years.

I went to my supervisor who was dressed in a short sleeve dress in January (thanks to menopause she said) and I was dressed in my long johns a turtle neck and a sweater, and I was cold and she was fanning herself. She said I couldn't wear completely invisible long johns under the uniform. No one would ever know it was there as I will probably never take off the flimsy jacket! Still she said NO.

I showed her where I had ulcers, scarred, as well as where I lost the tip of a finger to gangrene, still she said no.

What's the next step? Maybe she needs education but I don't want to come off as condescending. Write a letter? A doctors note? A letter to HER supervisor? What do you all suggest? I have about two months to iron this out. I was even excused from outside recess duty when I was a teacher! HELP!

Karen

#2 Shelley Ensz

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Posted 12 January 2009 - 03:30 PM

Hi Karen,

I'm dumbfounded by her response. I'm sure others here will have a better idea as to what the next step would be.

Personally, in the meantime, I'd wear the invisible long johns. I'm trying to figure what business it would be of anyone's what "underwear" I happen to prefer?!?
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

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

#3 janey

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Posted 12 January 2009 - 06:21 PM

Karen,
I'm with Shelley. I see nurses wearing clothes under their scrubs all the time. I've seen short sleeve T-shirts, long sleeve shirts, wool socks and clogs. Is there a regulation book that has the do's and don'ts of scrub wear in writing. I'd certainly check. Since your supervisor knows about your situation, maybe you should ask her opinion on what you can do to rectify the situation. After all, she is a nurse and thus, should be a problem solving for such things. :) I can't believe she wouldn't be willing to work with you to make you more comfortable so you can do your job.

Hope you find a solution!

You go girl!
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#4 canon

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Posted 12 January 2009 - 07:03 PM

Hi Karen,

First days of school are still tough. It is too bad the supervisor is a by the booker. Let things settle for a couple of days then see if there is someone other than her you can talk to. Find someone with a kind face. Wear your invisable underwear in the meantime and change the subject should it come up. There are rules about people with disabilities or special needs for modifications even in school. Check with one of the advisors. Good luck and hang in there.

With gentle thoughts,

Judy
A happy heart is good medicine.

#5 Buttons

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Posted 12 January 2009 - 11:13 PM

Karen it never ceases to amaze me how people show so little sensitivity to other people and nursing is supposed to be a caring profession! Personally I would just wear the long johns etc to help keep you warm and I think it's really none of their business what you wear underneath your uniform so long as it is not visible.

'Excused from outside recess duty when I was a teacher', you where very lucky Karen because while I was teaching I was still made to go outside and they didn't care that when I went back inside I couldn't even hold a pen because my hands were so bad. Some people just do not realize how painful Raynaud's can be and the damage that it can cause!

Take Care
Jen

#6 Jeannie McClelland

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Posted 13 January 2009 - 05:34 AM

Hi Karen,

I'm with Shelley and Janey, too. Good grief~ And a regulation that is not posted in writing isn't legally enforceable, I do believe.

I think I'd get a doctor's note and ask the admissions office to put it in my personal file for the record. I'd also carry a copy of it with me at all times, wear the invisible long underwear, and produce the note if Hot Hannah mentions the underwear issue again.

Best of luck. We already know you'll be a better nurse than Hot Hannah.
Jeannie McClelland
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#7 KarenL

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Posted 13 January 2009 - 10:24 AM

The reason she will know whats under my clothes, is the handbook states exactly what our uniform consists of. It's a uniform for student nurses. Of course nurses wear whatever, but as students, well it's like boot camp. It's their way or the highway. The official uniform is white scrubs only. Short sleeves. No rings. No earrings, or bracelets. Nothing. The only concession to the upstate NY winter weather is a scrubs jacket. It does have long sleeves but still is just cotton. I would probably still wear it in summer! The way I got out of recess duty was with a note from my doctor. So maybe I will involve him again and go back to "Mrs. No" (as we are calling her. If she still says no, I'll appeal to the school board. I will never have my jacket off anyway, so no one would see the long johns unless she does inspection which she will. Thanks for the support. will keep you posted.
Karen

#8 Amanda Thorpe

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Posted 14 January 2009 - 11:13 AM

Hot dog would be a better nurse than Hot Hannah!

I wonder if it's a "germ" issue with the clothing, nevertheless asking to "inspect" someone's under garments is just plain weird.

Some people have control issues and I wonder if this is hers. Ask her to spend the day bundled up so she knows how uncomfortable it can be to be subjected to a temperature not compatible with your body.

Amanda
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#9 Sam

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Posted 15 January 2009 - 04:10 AM

I was wondering if you can get ahold of the BVR services for your state and let them do the talking.
Sam

#10 CraigR

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Posted 15 January 2009 - 10:20 AM

Seems like the ADA Act attorneys haven't gotten to this organization yet! Perhaps an opportunity (just kidding...).

There must be someone higher up with a bit more compassion for the disabled and a little better understanding of the law.

Amazing...

You might add a thermal undershirt (though I have no idea if they have these for women). I wear them half the year, and I live in southern California.


Craig

#11 lizzie

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Posted 16 January 2009 - 10:43 AM

Hi Karen, glad that the nursing is going well. Being in the UK I do not know what the regulations/ system is in the US, but here if you have systemic sclerosis you are almost certainly classed as disabled under the disability discrimination act and your workplace are obliged to consider resaonable adjustments to working conditions, equipment etc to accommodate your disability.

Lizzie

#12 bowbec

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Posted 16 January 2009 - 11:46 AM

Karen,

Check into silk long john underwear. You can get through popular mail order catalogs.
Wear the pants, if you can't wear the top, wear 2 lab coats... If she can't see them..ie, underwear... how would she even know?
I wear the silk underwear long johns under my uniform because it is not bulky. It is very comfortable too!

Stay Warm!
Becky
Diagnosed with Diffuse Systemic Scleroderma May 2005
Raynaud's, GI, esophagus, skin and lung involvement.

#13 omaeva

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Posted 16 January 2009 - 08:17 PM

Have your doctor write a note.

#14 KarenL

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Posted 20 January 2009 - 11:35 AM

Thanks for all the ideas and suggestions! I have long silk underwear, the pants will be fine, it's the long sleeve shirt peeking out from the short sleeve scrub shirt that's the issue. But I think it will all work out.

I have a meeting with my immediate supervisor tomorrow, she can see the active sore finger tips...I think the cold is making tiny cracks near he corners of the nail? Ow they hurt! Anyway... Thanks for the contacts...I'll let you know how it all pans out.

Karen

#15 smac0719

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Posted 20 January 2009 - 12:19 PM

KarenL,

I'm with everyone else, get a letter from your doctor advising of the need to wear the extra clothing. Surely through the disabilities act they should make that allowance for you. I've learned over the years not everyone in the medical profession has the disposition to do the job.
I may have Scleroderma, but Scleroderma doesn't have me!

#16 KarenL

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Posted 21 January 2009 - 11:58 AM

Success!

I spoke with my teacher and clinical supervisors and they were TOTALLY supportive! They said that "Mrs. No" doesn't have to know a thing and I should go ahead and wear what I need to wear. My fingers cooperated right on cue and turned blue as can be (cyanotic in nurse talk :) And they both cooed over me an said oh you poor thing and such. So, all that worry for naught. Thanks again everyone and it just goes to show ya, that sometimes, It's not what you know it's who you know!

Peace
Karen

#17 Shelley Ensz

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Posted 21 January 2009 - 02:46 PM

Congratulations, Karen! That's terrific good news! I'm really glad you went the extra step of talking to them.
Warm Hugs,

Shelley Ensz
Founder and President
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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.

#18 Jeannie McClelland

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Posted 21 January 2009 - 05:32 PM

Wow, what wonderful (and warm) news! Good for you!

Lots of hugs,
Jeannie McClelland
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#19 Buttons

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Posted 21 January 2009 - 11:17 PM

Karen that's great news for you now you can stay warm with your silk undies on!
Enjoy the nursing course.

Stay Warm
Jensue

#20 Shelley Ensz

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Posted 22 January 2009 - 06:05 AM

Karen, I sure hope you are participating in the Online Survey: Needs Assessment of College Students Diagnosed with Autoimmune Related Diseases!
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

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