Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 08-02-2007, 08:08 PM #1
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Default RSD and sun...

Hey all,

Well, as you all know I'm english, so all I am used to is grey skies and rain. I have just been invited to the Middle East next week.. and I don't know if RSD can stand heat? The hottest place I've lived is LA but we were right up passed Pasadena and so had a breeze alot of the time.

However, as a female, I will have to wear a burkha and put up with wearing it all the time outside - does anyone know what they are made of? How does RSD react to extreme heat? If I go then apparently everything I need will be taken care of (hoist, carer room etc) but there's no point if I will be stuck in bed in agony for the entire visit!! LOL!

I REALLY want to go (if it gets finalised I'll give you all the goss later - it's very exciting)...

But, if it was you, would you go? I really want to go but not if it's going to make me ALOT worse...

Thanks

Froggsy xxxxxxxxxx
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Old 08-02-2007, 09:26 PM #2
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frogga,
That sounds great...would I go...yes. As long as everything will be taken care of for you, I'd say go. I'm sure they have A/C in their homes..My sister used to work in Saudie. She word the proper clothes whenever she went out. She is like me and hates the heat. She didn't have much of a problem with it. She did say that most of the time, during the day you stay inside. The only thing I would consider is this. Will you be in more pain and discomfort there? If you are going to be in the same amt of pain, then why not be in pain having a little more fun. Let us know if you are going....

Mary
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Old 08-02-2007, 09:36 PM #3
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Hi ya Frogga!
I so agree with Mary here.. "GO my friend"!! It will be a chance of a life time"! Is there any way of asking itf there is AC there?? have a list ready and ask any questions, concerns.. etc. you may have! Love and hugs as usual Frogga! Love, Desi
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Old 08-03-2007, 12:10 AM #4
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Hi Frogga,
I live in a hot climate (in the summer) & I don't really notice anything that I can directly say is heat related. Of course I wear shorts & t-shirts.
It sounds like you will be wearing quite a bit more than that when you go out sight-seeing.
I'm wondering how the flight might affect you though. What about the pressurized plane? I've been thinking about this myself as I am still planning my trip to Hawaii (somewhere in the future) and it is a long flight. I've only been on planes for short flights since the RSD & that was before the leg swelling became such an issue.
I notice you had ALOT capitalized. Sounds to me like you kinda decided already. As long as you don't get ALOT more pain, why not?
sounds like fun. Hope everything works out.
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Old 08-03-2007, 12:29 AM #5
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Oh Frogga,

Check this photo out.

http://www.cartoonstock.com/newscart...y/b/burkha.asp

I want a burkha, which one will I look great in.

http://www.time.com/time/photoessays...uslim_fashion/

Enjoy yourself and have a blast, even though they don't have pubs. To Life, Roz xxx
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Old 08-03-2007, 12:32 AM #6
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I have noticed that in the sun I can overheat quickly. PLEASE DRINK LOTS OF WATER. In seeing people wearing burkhas (sp?) here in California where hot gets to 90-100 in the summer, the material seems sheer. Try to wear lighter colors if possible. The benefit I can see is this: when I am flared up, I enjoy rolling up my pant leg and letting my leg soak up the suns warm rays. The leg stays COLD to the touch, but it pretends to be warm

Also, should you happen to be in the sun, be careful and wear sunscreen as your medication might cause you to be very sensitive to it.
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Old 08-03-2007, 12:31 PM #7
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Frogga,
Last fall when we went to Disney it was recor 100* temps so sunny, no breeze. We survived on sheer love of the days and a misting bottle. No one can stop you from using that. It has a small fan on top and strap to carry and some fit about a quart of water.
Keep spraying yourself.

When there are pain issues and long term health problems it is difficult to maintain core temp. I would take tylenol for a fever if you get too warm, they can be taken more often then the other meds,. Also have a back up plan in case youd suffer from heart exhaustion as if it turns to heat stroke that is very serious.

Check into health care facilities in the area you are at, perhaps a doctor is on staff at the hotel, Also how do they get paid, Just in case...nothing but positive thoughts.

I would read about the area too, nights may get brutal cool..
There must be that the clothing is keeping the sun off you too being helpful, like a hat on your head.

Keep a shorty list of medications, allergies and how to treat you from your doctor on your person somewhere, or a person with you case you were to faint...if your home doctor tells you what to do it can avide looking for immediate treatment at that moment.

But these are just back ups we don;t think you will have a problem just plan as if you were taking a loving pet or reletative with a health issue how would you plan...
ENJOY and I envy you
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Old 08-04-2007, 06:47 PM #8
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Hi,

Sorry I didn't reply before. However the laptop deleted my first attempt etc

Thanks for all your responses:

Mary, Thankyou!! I'd forgotten about AC because we just don't use it here as the climate is generally cold not warm! I think I will be taken good care of.. From what I understand my sponser sent one of his secretaries with a list of what I need to the local hospital and is getting it all organised. I think it's worthwhile. I am not making a 100% decision until I know how I am next week... but will let you know xxxxxxxxxxxx

Desi - thanks babe !!! xxxxxxxxx

LinMarie - thanks, you are so right, I do want to go an awful lot!!! I think the flights have been sorted to make it as easy as possible for me... but will let you know when I get back how it was... Thanks xxxxxxx

Roz - I loved some of those burkhas! was abit scared of the masks though! not a fashion item really. Margo has been practising tying the prayer scarves so hopefully we won't get off the plane and then discover we are not fully covered!! you know how it could be! (embarrasing!). I was very keen on the white one... Thanks xxxxxxx

Christine - Good plan about the light colours! I also find that warmth helps me look better and removes some of the ice coldness from my skin...Great plan about sunscreen!!! especially as I am a red head!!! Thanksxxxxx

DiMarie - Thanks! I will not be allowed the air fan apparently because it's disrespectful or something. I guess I will be boiled alive in long sleeves, long pants and a burka...and apparently a prayer scarf as well now. Geez this is getting complicated! I've been invited over by some Muslim friends (my dad is a Muslim) and am trying to not break their traditions but I am pretty ignorant. I feel I can't visit and force my Western ideas on to them.. Heat stroke - good point..! Will definetly watch out for that one. As for cold nights as well! forgotten about that one! Thanks xxxxx

So... Ok.. A bit more luck? Well. My new carer Margo who is South African arrived on Wednesday and she has agreed to accompany me. And guess what? She knows the middle east because she worked as an au paire for one of the princesses there!! suggests that it was supposed to happen I suppose? All I have to do is make sure I don't get worse before we go and that I don't get a pressure sore... then YAY!!!

Thanks so much!!

Frogga xxxxxxxx
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Old 08-07-2007, 11:17 PM #9
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I am beyond excited for you
Have the time of your life

Peace

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Old 08-07-2007, 11:36 PM #10
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Burka advice - watch out - it's almost impossible to buy anything in the M.E. other than 100% polyester so try to find one that is only cotton (good luck!) Second best will be silk. The polyester is utter misery in the heat! (I learned this when I lived in Iran). The one I ended up wearing every single day was the one I made myself out of cotton gauze before I left the States. The ones I purchased from various suppliers (mostly Jordanian) were 'stylish' but sooooo unbearably hot and sticky. It was 110F when I was in Tehran.

Also - I wouldn't worry overmuch about the heat if you wear all cotton. It really is cooler to be completely covered in blazing sun as opposed to being almost completely bare, as Americans are. Folks in the Middle East and the Arabian desert know a thing or two about surviving in heat without air conditioning!!!

Also a warning about wearing light colors: they are not fashion choices in some cultures, but religiously coded. For example, in some Muslim cultures white is reserved only for the most highest ranked religious clerics in special orders. Dress code is a legal matter in Countries where law is shar'ia (Muslim religious, not civil).

And finally! wouldn't it be better to be in complete misery in exotic Saudi Arabic than dull old England! Good luck and off you go!
hugggggs
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