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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. Sacajawea

    Wheelchair wedding...

    Hi Eve. Congratulations! I am getting married in about four months. I may or may not be able to be able to walk down the isle myself. I have a transport chair, which is more narrow than a wheel chair since it doesn't have the big wheels. We already discussed (other friends of mine and...
  2. Sacajawea

    Getting Married-- How to handle a wedding???

    hi all...I have intended to go through these threads but after two weeks of dental work, I'm still a wreck. I found my wedding invites on etsy...my mom thinks they are too pricey but it's all put together so I like that. I have trouble doing too much online these days. Fortunately, my...
  3. Sacajawea

    Getting Married-- How to handle a wedding???

    Thank you! Thank you so much for the replies and wonderful advice! So much I hadn't considered so I'm glad I thought to ask! We are keeping things as simple as possible and delegating help. I won't be able to move the date due to friends/family coming in from far away, plus the hall has been...
  4. Sacajawea

    Getting Married-- How to handle a wedding???

    Hi All, It's been awhile since I've visited the forum but I'm hoping you might be able to help me out a bit. I am actually getting MARRIED in about six months. Fell in love with a wonderful man, disabled himself, very compassionate and helpful but much healthier than me. Originally we...
  5. Sacajawea

    Cooling vest???

    Sushi and others...oh boy do I love my vest! When I first got it out of the freezer it refused to zip and I totally freaked out thinking I made a mistake but it's fine now. I was able to take it to the party and had a good time (can't remember if I wrote about that). I've worn it in the car a...
  6. Sacajawea

    Overseas trip, tons of flying, relatives in a different culture -- I'm freaking out!

    overseas trip http://www.mosken.com/sit.html Can't type much tonight but this is a nice site that might help you handle the relatives and maybe you can get in contact w/ the site owner. What an exciting adventure...the stuff we dream of, but your concerns are very real. I hope you get some...
  7. Sacajawea

    Cooling vest???

    Hi All, sorry it has taken me so long to get back to you. I went to a convention for one day two weeks ago and have been flat ever since. I did get the cooling vest in the new size. This time the bag it came in had VERY little odor, nothing compared to the first vinyl bag. I've used the...
  8. Sacajawea

    Anyone else finding it hard to prioritise Austen over XMRV?

    I'm so sorry to say I haven't even started the book-- or been to PR for awhile. I plan to start it today. It's been a rough few weeks! SJ
  9. Sacajawea

    Cooling vest???

    Hi Sallie, I edited this since I didn't see your reply. I got mine from Arctic Heat USA. I called to talk to someone about the measurement issue and other than her not helping me much, I love the product itself. She's kind of irritated at both myself and the friend who purchased it. I'm...
  10. Sacajawea

    Cooling vest???

    Hi All, I didn't get to return the vest until this week so hopefully I'll have it by next week. I had trouble getting a correct size to order, and the lady (Nancy) wanted me to go down "one" size...the thing was so big on me! But it matched my chest measurement. So a good friend who weighs @...
  11. Sacajawea

    Cooling vest???

    Hi All, thanks for the replies! The wet denim jacket in front of a fan, yes, I've done that myself! But I have air conditioning in my house (it does a poor job these days) and none in my van. Anyway, I got the vest yesterday. I was so excited I could hardly get the package opened...
  12. Sacajawea

    Money for Phoenix Rising and WPI: Isearchgive instructional video!

    isearch Hi Frank, I tried it out the day you sent the email... I couldn't get it to become permanent-- it only worked when I went to the site. Do you have to go through these steps each time? I wouldn't mind doing this to help out but I feel like I missed something here. I ended up going to...
  13. Sacajawea

    Cooling vest???

    Does anyone here own or use a cooling vest? I am getting one and have chosen a model made by ArcticHeat. I live in a very humid climate and can't tolerate the heat at all. I can't wait to get it! Any feedback/experiences would be appreciated. This one is lightweight, made with...
  14. Sacajawea

    Life Upright (good bye OI)

    That's really amazing! Over the years I've done some crazy stuff in order to be out and about...I say whatever works! Never tried that, though. I saw someone mention using a wetsuit and thought of this article someone sent me last year about a boy with ataxia who uses a wetsuit to stay up...
  15. Sacajawea

    Your voice quality-- do you often get hoarse or are you unable to speak?

    Voice Hi June and all-- thanks for asking. She was deeply touched by all the replies. She sees her doctor on March 8th and will mention the thyroid and what you, june talked about...I can't remember the name but I fwd everything to her. I have some more comments but my computer/internet is...
  16. Sacajawea

    Your voice quality-- do you often get hoarse or are you unable to speak?

    Hi All-- I'm asking this question on behalf of a friend who has suffered from Asthma starting at age 40, on to develop Fibromyalgia about ten years later with a possible CFS/ME diagnosis. She's not able to post on her own. I've told her about different ones here that have mentioned an...
  17. Sacajawea

    Today on Dr. OZ ~ EBV & Chronic exhaustion, cancer, etc.

    EBV Hi Koan!!:Retro biggrin: Hi All, Darn, it already came on here and I wanted to see that show. It comes on right when my kids are coming home and I never thiink to just turn it on. I haven't been here much either, trying to deal with so many other things. I'm sure someone will post it...
  18. Sacajawea

    Can you trace your illness back to about 1980?

    I have my medical records from birth to age 21...we sent off for them a few years ago and I was surprised to find out when I tested positive for mono...July, 1981...I just went and looked it up. My mom took me to the doctor, even ER several times and they tested me at the ER but guess...
  19. Sacajawea

    Scary book about problems with supplements

    Hi! Dreambirdie, I could just kiss you...I have been slightly worried over the last year or two or so because I took a series of chinese herbs prescrbed for me from a TCM doctor in California. I went to him while visiting family to try acupuncture for persistant sinus infections. He helped me...
  20. Sacajawea

    How do you manage a laptop while lying down?

    Lol I added Fern's name to clear up that confusion...part of the trouble is when I hit reply to a post my memory of sorts disappears....gotta get better at this! Thanks IF and Koan...still sitting up for now but if I don't get the hang of this particular keyboard I may have to upgrade. :( SJ
  21. Sacajawea

    How do you manage a laptop while lying down?

    Hi All! I finally got a new keyboard today. A big difference! :D It's been impossible since a crash last week to even type a few words on the laptop so I'm just thrilled. I love my Logitech mouse too, as I mainly use it on my hip. I'm glad you discovered that handy use, Andrew...
  22. Sacajawea

    Klimas XMRV Lecture in Florida

    Fantastic Transcripts! Koan...remember to breathe :D! I found myself going back and forth between the two number 2's and they're both fantastic, as are the whole lot-- you should be proud... (I've read 1 and 6 thoroughly, and will go back for more tomorrow)...so perhaps others have too and for...
  23. Sacajawea

    How do you manage a laptop while lying down?

    Smiling!! Koan, I know...I am just beside myself with joy, smiling, laughing, just tickled beyond belief...not even going to kick myself for the wasted months, I probably needed that rest anyway. A small victory...bringing me the biggest thrill right now. Asante sana!!!! Merci! Obrigado...
  24. Sacajawea

    How do you manage a laptop while lying down?

    Another keyboard! :DKoan, It really was that simple...but don't think I haven't tried it before. I tried it last year w/ my son's laptop and it wouldn't work. So I tried it w/ the exsisting keyboard (wireless) on the other PC and it didn't work (and I have no idea where the disc is but I...
  25. Sacajawea

    How do you manage a laptop while lying down?

    Voila!!! You got that right, Lodershaw...I just realized I can't see any of the replies so I won't address each of you but I'm so thankful I asked this because I NEED my internet life, lol...I'm so behind on emails I feel I'll just have to start over. And not joining in here, it's been rough...
  26. Sacajawea

    How do you manage a laptop while lying down?

    I'm going nuts here. I've had a laptop for a few months now and yet I still haven't figured out a way to type while lying flat. I am so limited in my ability to type upright that I'm unable to answer emails, post, etc... I used to use a desk top with a wireless keyboard. I had the monitor...
  27. Sacajawea

    Vertigo

    Hi Jody-- I had the same experience with my chiro's chair. I could not go down on it but would have to climb off and on. He had never seen a patient with that issue but knew the vertigo was real. Then I switched chiros and the new one thought I was being ridiculous (of course, insurance or...