Purple hands....and school

[littlemissshy]

Hi, can someone help me? I obviously have raynauds but i have it in my hands and feet, i am still in school which is a problem i have to overcome everyday. I have to carry my bag where i go, but it keeps cutting off my circulation and causes my hand to go purple. People ask why i have gloves on as it is, and having a purple hand and a white hand doesnt help my situation. Does anyone have any suggestions? Also, when people ask me what the matter is should i explain what happens, or call it raynauds-the problem is when i say i have a medical condition people feel awkward and then i hear them talking about me, if i call it raynauds disease -as my doc refered to it as, i will be bound to be called the disease, im stuck....what should i do?

[Hidden]

I believe it is now referred to as Raynaud's Phenomenon (that's a mouthful) as in fact it isn't a disease. Just say, "ooo I have a very rare medical condition, which means my hands and feet are always cold and sometimes change colour". That might actually intrigue them. Curious did your GP pronounce it "Ray nards" or "Ray nos" my Rheumy pronounces it "Ray nards".

[zenabb]

The disease or phenomenon is called the French doctor Raynaud who discovered it in the 19c. In no way can it be Renard which means fox in French.

To get back to littlemissshy. You can't be expected to cope with all that at school. It needs to be official with a letter from your doctor, explaining it all, addressed to the head of your school and the school nurse. Do that as soon as possible is my advice.

[littlemissshy]

Thats a very good idea no-one, i somehow intruiged a kid at school today =) and ok, yes it is, ill have to practice haha and my dr says it ray nards. And zenabb, i have a note in my planner from my mum and im getting my dr s letter photocopied-im kinda prone to ripping things!! :/ i might mention it to the head but we dont have a school nurse, which doesnt help! Luckily, i have a few friends in school who understand my condition and accept it, and of course you guys! Thanks fof the support, i dont get a great deal of it while in school,

Littlemissshy

[Skwiglee]

If too many people bug you about it. Tell 'em to Google! It sounds like you have a very supportive teacher, which is great news. I hope that your mates are sticking by you too. Are you in Wales? The map looked a bit familiar, as I am in Bristol.

I don't know how old you are. But I have always been interested in how the body works. I'm 55 now, but I'm really glad I took biology at school. Obvious thing being is the circulatory system.

If you and your parents are willing to look at complementary treatments. I have lots of things that I have used myself, over the past 6 years. Nothing at all painful!! So that's even better I have used Natures Best Veintain, which boosts your circulation. I would suggest that you check with Natures Best on the dosage, as I don't know how old you are.

I also suggest that you read The Power of Now, by Eckhart Tolle. At the very least, it should give your confidence a boost. As I guess things are pretty scary for you now. So my advice to you now is to avoid any 'doom and gloom' merchants.

And one last thing. This winter, I bought a massive range of wrist warmers, mitts and scarves. The more bling and fun the better! Turn things around, by making gloves etc as a fashion accessory! I got a lovely leopard print scarf with paws from Boohoo.com. So many people asked me where I got it from. When it was really cold, I sat watching the telly with it. Warm neck and hands. Result!

Good luck xx

[littlemissshy]

Thats a good idea! Yes, he is very nice, and my friends are too. Yes im in wales, near abergaveny....i am in my early teens, i would say my age but im not allowed as im not over 18.yes, i am actually learning about blood now! My mum is hoping im not getting fibro mialgra...my nan has it, and as there is no cure and its very rare, i might not be properly diagnosed with it.., ok thats interesting, ill look into it, thanks. Wrist warmers, havent heard of them before...are they any good? I dont know i you ve seen these, but i have a blanket with arms in it from b and m? Anyway they are so cosy!! All he best,

Littlemissshy xx

[Skwiglee in reply to littlemissshy]

Hiya!

No, I totally understand about not giving your age away. But as I'm 55, going on 15 I can appreciate what you're going thru. At first, I used to hide my hands away from view. But I could still see people looking. So I thought, to hell with it! And that's when I started with the bright colours. I also paint my nails. My fingers are very bent, so I can't wear gloves. That's why I wear wrist/hand warmers - fingerless gloves except there's only a thumb hole. I'm sure you've seen them. You could start a trend in school. Actually I've noticed that it actually seems to put others at ease, with me.

As you're learning about blood in class. It might be worthwhile having a quiet word with your teacher, so that they might help your class mates to understand. Also, to learn about the nutrition that you need to keep your body healthy. I've recently started having chia seeds everyday. I have so much more energy, sleeping better too.

I have a couple of slankets, but I do find them a bit restrictive when I need to get up and down. So I now have a poncho which keeps me warm all the time. The slanket across my knee - that would make it a blanket, right? - but put my arms thru the sleeves into the pocket.

Hopefully we will have a lovely warm summer! Best be off, the washing up is calling me.

[living-the-dream-ssc-ray]

Hiya check out the Raynauds and Scleroderma Assocation's online shop at raynauds.org.uk for helpful accessories also ! x

[littlemissshy in reply to living-the-dream-ssc-ray]

Hi, thanks, i just did.... these some cool stuff on there x

[Lindalo1]

I might suggest carrying your bag over your shoulders or use a backpack. That was suggested to me by my MD. Good luck to you.

[littlemissshy]

Yes, im going to experiment next week, im also going to put the books i dont need before break in my locker. Thanks, all the best,

Littlemissshy