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Hard time with Raynauds

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#1 marsha

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Posted 12 December 2012 - 07:47 AM

I am having an awful time with my hands and feet so far and It's not even "winter" yet!! I started a very part time job a couple months ago, I work one day a week LOVE IT!! They keep the office at 62 degrees :( !! Yesterday I was sooo cold I could NOT get warm. I can't wear gloves or mitten at work because my job is laying out a newspaper and I need my fingers free to be able to work.)!!

I came right out and said several times, "Oh, its freezing in here I can't warm my fingers up", but to no avail. I ended up going to the bathroom and running my fingers under warm water.

The problem is this, well there are actually two:

Once my fingers spasm I can not get them warm, the color is either red or black! I just saw the rheumatologist 2 weeks ago and he noticed the capillary delay and mentioned it to the PA working with him. My fingers are constantly in pain or numb.. Also, I have been so stiff, I hurt all over every joint! I just want to cry. :(

I am not sure if the swelling in the fingers and hands is due to the Raynauds or if it is sclerodactyly!! ((SCREAMING IN FRUSTRATION))

The other problem I have is how can I get them to turn the heat up in the office without going into such labored detail about my illness :( which they won't understand anyways? I fear this is going to be an awful long winter up here in the north. <Sigh>.

I hope everyone else is keeping warm and symptom free. I have fallen into the pity pot and I can't seem to climb out. I am sick of being ill.

#2 Shelley Ensz

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Posted 12 December 2012 - 09:09 AM

Hi Marsha,

I'm sorry you are so very cold and in so much pain. I'm willing to bet that most of us wouldn't be able to function at that temp, not with Raynaud's and especially not with Raynaud's and scleroderma.

You could ask them to turn up the heat by telling your manager that you have Raynaud's, which is a severe reaction to cold that causes your blood vessels to go into spasm. You can (and should) dress in a lot of layers to try to keep as warm as possible, and keep hand warmers in your pockets, but since your hands must be free for work, you probably really need the room itself to be warmer. If they can't turn up the heat in the whole office, ask if they can (safely) provide a space heater near you.

The Americans With Disabilities Act (ADA) only covers employers with 15 or more employees, and it only applies to part-time employees who have worked more than 20 consecutive weeks for them, so be careful about expecting them to comply with your request unless you are certain that the ADA applies to your situation.

I've read that some courts don't uphold ADA cases for people who are already receiving disability benefits based on being completely disabled, with the argument that of course you can't work that job, because you have already been determined to be disabled for any job. So you see, there is a big gap in coverage for people who are disabled; you need to be able to somehow leap over that 20 week mark, with an employer who has more than 15 employees, first of all and then really hope that they will accommodate you without a legal battle if you are already receiving disability.

One way or another, it sounds like you are going to have to figure something out. It's pretty much certain they are not going to budge the thermostat setting just because people comment that they are cold. By itself, being cold is not an illness and living in a northern climate you are expected to just toughen up. But of course, in your case, that's not possible, so something will definitely have to change. Soon!

I'm hoping you work for a large employer and that you've been there over 20 consecutive weeks and/or that they are eager to provide more heat and make the workplace more bearable for you. I'm giving some extra warm hugs in hopes they help for a minute or two. If they don't, can't or won't turn up the heat, you may want to look for other part-time work in a nice WARM office! Brrrrr......

:emoticons-group-hug:
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.

#3 Joelf

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Posted 12 December 2012 - 01:10 PM

Hi Marsha,

How horrible for you to be in so much pain with your Raynaud's symptoms; I'm so sorry.

I have found that wearing lots of layers, as Shelley has suggested, can help as you can then keep your core temperature a little warmer. Unfortunately I think that you are going to have to approach your manager about the office temperature; 62 degrees isn't very warm, even for employees who don't suffer with Raynaud's. It's such a shame, as you've obviously found a job that otherwise you're enjoying so much.

I do hope that you can find a way to improve your working conditions and here's another warm hug to keep company with the one Shelley's given you!

:emoticons-group-hug:

Kind regards,

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#4 marsha

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Posted 12 December 2012 - 02:29 PM

Unfortunately I have only been at this job for 7 weeks, I am not receiving disability, and the office comprises of about 12 employees. I will ask about the space heater, I didn't think about that, even if I have to buy it myself it might just be worth it.

If I am not collecting disability does that mean I do not qualify for ADA accommodations? I am layering up, but my hands just are always cold as I am sure you all can relate to. I wear nice big winter boots where ever I go. Thanks for the hugs!

#5 Shelley Ensz

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Posted 12 December 2012 - 07:34 PM

Hi Marsha,

As I understand it, you don't need to be on disability to qualify for ADA accommodations. But the kicker is of course that the company must have more than 15 employees, plus then you must be on the job for at least 20 consecutive weeks.

Therefore, it seems like the most you can hope for is that they will be understanding and make some sort of attempt to accommodate you anyway, just out of the kindness of their heart. Brace yourself a little bit though, as some employers aren't very big on "heart" if they think it might affect their bottom line (such as increased heating costs) or productivity. I also tried to check OSHA requirements for your state, but it looked to me like there is no law about temperature regulation in the workplace in your state.

Meanwhile, I suppose you could try to do everything you can to keep your metabolism fired up. Eat regular meals including sufficient protein; only drink hot liquids; avoid eating or drinking anything cold while you are working; do as much aerobic exercise as you can manage; do windmills (in the restroom) to keep circulation going into your fingertips; and avoid caffeine, nicotine and anything else vasoconstricting like the plague. Wear two more layers than you think you need, including thermal undies. Keeping warm to the point of hot from head to two may help your hands, but also keep hand warmers in your pockets so you can instantly warm them up. Put everything you've ever learned about Raynaud's into practice because a little space heater isn't going to solve the whole problem.

And, if all else fails, start looking for another part-time job with better, and more humane, working conditions.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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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.

#6 JudithL

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Posted 12 December 2012 - 07:38 PM

Marsha, I have two suggestions. Neither is ideal, but one or the other may help you until you find a more permanent solution.

First, you could try wearing surgical gloves. They're obviously not insulated, but they do afford some degree of protection against the cold. And if surgeons can operate while wearing them, surely you can do your newspaper work with them on.

Second, you might try fingerless gloves. It's obviously best to cover your fingers, but I find fingerless gloves to be better than nothing when you need to keep your fingers uncovered.

Best of luck to you with this dilemma.

#7 Sweet

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Posted 18 December 2012 - 09:54 AM

Ugh, I'm sorry!

I'm having the same problem. I don't work, but I have had more Raynauds attacks this winter than I have in years. Shelley is right about the ADA. It would be worth talking to your employers about it.

Hang in there.
Warm and gentle hugs,

Pamela
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#8 Shelley Ensz

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Posted 18 December 2012 - 05:40 PM

Hi Marsha,

Have you worked anything out with your workplace yet, or resolved the issue in any way? I'm thinking of you and sending more hugs your way.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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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.

#9 Shelley Ensz

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Posted 18 December 2012 - 05:48 PM

Sweet, I'm sorry you're having more Raynaud's attacks than usual this winter. Is there anything more you can try, to lessen them?

I am going to send a lot of warm hugs your way, in hopes they help!

:emoticons-group-hug:
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.

#10 miocean

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Posted 18 December 2012 - 09:33 PM

Dear Marsha,

Brr...I am freezing at 70˚ and have a blanket over me!

Keeping your core warm is essential. I invested in long silk underwear and this time of the year layer them under my clothes. A warm scarf around my neck helps as well. I also wear warm lined boots and have the most wonderful slippers that look like boots, they could be worn in a office environment but I wouldn't wear them outside. A thread from the UK Forum has some good advice for keeping warm.

I was in my doctor's office and there was a wonderful portable heater in the waiting room. It didn't make a sound and radiated a lot of heat. My husband commented on it and a woman who usually works in the billing office said it is hers, she usually keeps it under her desk and even uses it in the summer but since the waiting room was so cold she let them use it.

Are you laying out the newspaper on a computer? My husband was in the newspaper field back when everything was done by hand and had to adapt as the times changed. I believe there are mouse warmers and other aids that might help.

Do a search on Raynaud's or Keeping Warm on the forum and you may find information from other forums that can help you. I am glad you love your job and hope you are able to continue to do it.

Good luck and stay warm!

miocean
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#11 marsha

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Posted 19 December 2012 - 07:54 AM

Shelley,

I am now working from home, mind you it's only one day a week but I bundled up and it was a nice. The only problem now is learning to focus on work with 2 cats chasing a mouse and the kids calling and asking all kinds of questions!! My heart goes out to anyone who suffers with Raynauds, it sure does stink!! But I always wake up thankful that I can walk (even if stiff and achy) and live a relatively good life. There are many others who are not so fortunate.

Thank you all for the warm hugs and thoughts. Right back at you!

Marsha

#12 Sweet

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Posted 19 December 2012 - 06:20 PM

Thanks Shelley, I'm doing a lot of warm baths and hand washes lol, gloves, hand warmers, the usual. :)
Warm and gentle hugs,

Pamela
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#13 Shelley Ensz

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Posted 19 December 2012 - 08:43 PM

Hi Marsha,

Oh my goodness, that was sure a fast, compassionate, and downright brilliant solution to the problem! I am sure you miss your co-workers, though. That's the part I always craved about working outside the home, just the conviviality of being around other people. Even though the trend is certainly towards working at home, and even though it has tremendous advantages especially for those of us who are ill, I am sure you are missing the office atmosphere.

As for the cats, I hope they've caught all your mice by now! Our cat throws a fit when we do the mailings, insisting on sitting smack dab in the middle of the paperwork. So far no donors have complained about cat hair in their receipts but I am braced for it anyway.

Now, about the children. Please do make sure that whatever arrangements you had with them when you worked in the office are exactly the same as when you work in the office at home. For example, if they are of babysitting age, send them to the babysitters. If they are grown, do not let them call you anymore than they would if you were working in an office. It is way too easy for people to assume that people who are working at home are not working at all. If you don't draw the line, fast and furious, with everyone, the whole world will walk over your precious work time and you will be unemployed faster than you can shake a stick.

The flip side of that is that people who are working from home, even very part-time like you are, also tend to skip the mandated breaks that they would take if they were at their employer's offices. Do NOT fall into the habit of doing that. Take your mandated breaks and set the oven timer if you have to, to make sure you relax, without any type of work, for your breaks and lunch hour.

That's a good time to call back the kids (until the buzzer goes off) or play with the cats. People are probably used to you being accessible 24/7. You're a career woman now, even if only part time. And dress for work that day, even if you can do the work in your pajamas. If you look like you are really working, and act like you take your job very seriously, then your family and friends will relent and let you become career woman for a day. But meanwhile, sorry to say, they will just naturally do everything in their power to try to defeat the new career woman in you. If only because that is their "comfort zone".

Okay I probably gave you a ton more advice than you needed or wanted, so I apologize for mother-henning you, but please do not underestimate the challenges of working at home. It is much easier to work in an office, in many regards!

:emoticons-group-hug:
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.

#14 Sweet

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Posted 20 December 2012 - 06:51 PM

Oh Marsha thats's great! Pet the kitty for me hehehe
Warm and gentle hugs,

Pamela
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#15 Amanda Thorpe

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Posted 21 December 2012 - 05:02 PM

Hello Marsha

At least you have a solution and I assume it's only for winter and you'll return to the office when it's warmer weather?

Take care.
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#16 marsha

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Posted 22 December 2012 - 07:18 PM

I will pet the kitties Sweet, Amanda I will be working from home from now on I am not sure if I am totally happy with this.. I think I am going to miss the company! I think It's going to be a looong winter here in Northern Maine, We already have had 2 feet of snow!!! It was kinda warm today 40's so some was melting but it is supposed to turn off really really cold below zero on Monday :( UGH~~ Keep warm and happy holidays to everyone
Marsha

#17 miocean

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Posted 01 January 2013 - 08:47 PM

I have discovered the hand warmers Sweet mentioned! These are advertised mostly for hunters or those that work outside but they are great for Raynaud's. My husband gave me some as a gift after I saw Sweet's post and said I'd really like some. They are these amazing little packets you shake and put in your gloves for warmth, they also have ones for the feet.

Yesterday I was on the beach with my gloves and my hands got so cold I had to leave, they were white and blue as they warmed up they hurt so badly. Today I used the hand warmers and they were great. The ones I have still are warm 8 hours later! They reactivate with a shake and I now have them on my neck because it is a little achy.

AgaIn, READ THE WARNINGS on the packets if you decide to try them. They do get hot and can burn, especially if you have sensitive skin. They should not be used in areas with open sores. You could layer them between two sets of gloves if you did have a problem.

Maybe these would help you, Marsha.

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#18 Shelley Ensz

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Posted 02 January 2013 - 11:49 AM

Marsha, I am sending lots of WARM hugs your way. Even at home I bet it is still a challenge trying to stay warm.

Miocean, how thoughtful of your husband to get you hand warmers. Perhaps I should mention that these are really hard if not impossible to find in normal stores, but they are readily available online and at hunting and sporting goods stores. If you buy them in bulk, they are under $1 (US) for a pair (two of them) and most of them last for a very long time (most of the day).

Yes, I agree, the hand warmers are really great. But I found out years ago that it is a good idea not to use them in your shoes or slippers; they can get too hot and if your feet are feeling that sort of frozen cold, it makes it hard or impossible to feel the burn, too.

I suppose we have to be similarly careful with hands, but most of us probably don't normally put shoes on our hands. :(

Anyway, if you are experiencing a temporary or permanent lack of sensitivity, be sure to be careful using them. I find they work best when I just keep them in my pockets. I can warm my hands up at any time and nobody is the wiser.

For that matter, I've paid a lot more attention to just having (or sewing) pockets in my clothes because just in themselves they are a wonderful anti-Raynaud's program.

Jeannie went on a sewing extravaganza and added warm pockets to all her old clothes. If you are a sewer, you can also use thermal materials for pocket linings, such as recycling an old pair of thermal underwear.

When I'm getting dressed I try to remember to consider the pocket situation so that I have pockets available either in my slacks or tops. It took me a long time to learn how to take anti-Raynaud's measures *before* an attack occurred. It is a zillion times easier to try to prevent an attack, than to try to recover from one. After awhile, you can learn your trouble-spots -- that always chilly restaurant, the frozen food aisle in the grocery store, even tense situations -- and take measures to keep warm before it's too late to avert an attack.

Some people with more advanced disease might find it impossible to completely prevent attacks, but really proactive measures to try to avert them should still help to reduce the frequency and intensity or duration of them. We should all consider medication for Raynaud's when we need it, as well. Sometimes it can be as simple as switching the type of blood pressure medication we take.

:emoticons-group-hug:
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.

#19 Joelf

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Posted 02 January 2013 - 01:15 PM

Actually it's interesting reading about everyone's experiences hand warmers.

My husband and I had a day out in London (busman's holiday for him ;) ) and we came across this lovely market on the South Bank. There was a fellow selling gel pads that heat up as hand warmers and I bought a couple, after regaling the poor chap with lots of information about Raynaud's and explaining all about how painful a condition it was. I can't quite remember exactly how it came about but he insisted on my trying one on my neck?? where it was a little too hot (I can see how easy it would be to inadvertently burn yourself!! ^_^ )

Having used them inside my gloves they do seem to be quite effective as hand warmers, although I really wouldn't recommend using them on necks (or any other sensitive parts of the body!! :P :lol: )

Kind regards,

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#20 miocean

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Posted 02 January 2013 - 03:55 PM

My husband bought my hand warmers in a big box store that sells home building supplies. Mine are a charcoal base, not a gel, and reactivate by shaking. This morning I tried to reactivate them but they were "done." They say the are environmentally friendly and you throw them out when done.

Another great thing I have seen lately but don't have is a scarf with pockets at the ends. It serves the double duty of keeping your neck and your hands warm. I know there are a group of knitters here, they might be interested in making them. I have found scarfs to be a great addition to my wardrobe, both in changing the way an outfit looks and keeping warm.

I've learned to check for pockets before I purchase sweatshirts and jackets to make sure they are big enough and open properly for sticking my hands in.

miocean
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