• Welcome to Phoenix Rising!

    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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. T

    My Airbnb Situation..

    Sorry, but is it possible for me to add a word to my longer post above? My sentence in the third should read, "I have HAD them tell me, etc." Thank you-- tudiemoore
  2. T

    Long Term Plans- Hope for the Best, Plan for the Worst

    Wow! Wow! Wow, sparklehoof! That's all that I can say... tm
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    Long Term Plans- Hope for the Best, Plan for the Worst

    Sparklehoof, as far as utter practically goes, you may want to look at a website I throughly, enjoyed "How to Get On", (I believe is the name or something very close to that). Lots and lots of info about looking at little known programs and assiantance. I felt that it was great information to...
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    If you are in the Atlanta, GA area and need help with shopping or food prep

    Hi. CW1--How long did you have Grace cooking for you? How did you meet her? How great to have healthy meals prepared for you! Do you know if she, or someone else you might know in the Atlanta area, does "around the house" assistance? Another pair of hands, so to speak! Even after moving over a...
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    Please help me find medical explanation for noise sensitivity which will convince my parents

    Seems you have gotten lots of good info and suggestions but none exactly fit for you? Obtaining earplugs and all the other things might seem impossible for you if you are bedbound. Maybe we need to think of things that are within your power to help you cope. Keeping the door shut might be the...
  6. T

    My Airbnb Situation..

    And, MisFit, you are not a toy--you are a real person. These people are strangers with whom you have a business agreement. Period.
  7. T

    My Airbnb Situation..

    You don't have to go that far--eeek! I believe some of these things can be helped tremendously by not being so helpful and friendly--really! In my own interactions I learned that being my "normal" self can be seen by others as being really, really, really interested in learning everything...
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    Dr Raymond Perrin(perrin technique) is hoping to have published reports this year

    Sorry I haven't chimed in since my post in May--just simply didn't come back to this particular post--lots and lots of interesting things on PR :love: Re: my remission after initial treatments--I am sorry but I honestly don't have notes and don't remember. But I did have the list and worked on...
  9. T

    How many hours do you sleep?

    Currently no daytime sleep but "stretching out for a few minutes" as my grandmother used to say, (about an hour) in the afternoon. At night--ugh! Never nearly as much as would be healthy. Nothing seems to work and certainly not on a consistent basis. Lucky if it's 5 hours--it's 2:30 AM here...
  10. T

    Map of US Based ME/CFS, POTS, and Lyme Doctors (Feedback Please!)

    Jesse2233, I didn't read this thread very carefully! I overlooked your statement about layering in more detailed maps for clarity. This looking more and more awesome! Thanks for your ideas, expertise and time-consuming work-- tm
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    Map of US Based ME/CFS, POTS, and Lyme Doctors (Feedback Please!)

    Anne Corson, PA? tm
  12. T

    Map of US Based ME/CFS, POTS, and Lyme Doctors (Feedback Please!)

    Since I know nothing about creating something like this, or anything at all re: technology :D, I will chime in as a seriously right-brained CFS-er, Lymie-- Always hard to sort through lots of info-but visual is definitely the best-so---what about the map as a series of "overlays"? Or whatever...
  13. T

    what causes the sore throat we get?

    Early on I very often had rather mild, fleeting sore throats. I say fleeting--at times at times they disappeared overnight. I developed a severe version, but no congestion, inflammation, etc., when social plans abruptly changed one evening, had to wait for taxi, etc. and was up almost all...
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    Anyone had Mohs micrographic surgery for basal cell carcinoma?

    Had a squamous cell tumor removed by Mohs surgery some years ago. All turned out fine but lots more complex than had been expected. It was in the crease by my nostril. A concern I had was that the growth looked different from the many other basals I had had. Surgery went a total of eight hours...
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    Anyone have a personal assistant or caregiver?

    I would never have thought of copies of driver's license and social security card! Background check, yes--due to my "criminal background", as therapist in a prison. A lot to consider, Offset Entiity, I know. I hope you'll take your time to go forward. I know I regret sharing/hiring some of...
  16. T

    Small business owner - and struggling.

    lior--sounds like a job that would be quite challenging under any circumstances, but fun! It's wonderful to have found something you can be so enthusiastic about-- Do you have a mentor? Or someone who has had experience in similar settings, someone who you are comfortable with, who is outside...
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    Anyone have a personal assistant or caregiver?

    So happy you found someone to come in as a helper-- You most likely will quickly think of many things she can do to help you. I would just really think about those things that are difficult for you, bathing and dressing, doing errands? I don't have anyone currently but when I did I gave a lot...
  18. T

    What Psychological Topics Need to Be Researched?

    I've been giving this serious thought. I believe we all benefit from connection, support, encouragement-- However, the physcial piece usually prevents me from accepting these things. I really just don't give a s###t -- give me the possibility of not having to decide which of the things I...
  19. T

    PEM and pacing

    Pushing through--the trite saying--"Have to learn the hard way" led to such physical, as well heightened mental and emotional exhaustion, that I lost inhibitions about giving in and giving up. Especially a few experiences were vivid in my mind. I still don't pace well but am learning after so...
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    Sunblock factor 50 available in UK -anyone found one that works on very sensitive skin?

    How well I know the search--stings, smells odd, somehow moves from my hairline into my eyes--and on and on-- I read some reviews in Spring and selected the reviewer's first choice, Australian Gold Mineral Lotion. It is a botanical broad spectrum sunscreen with an SPF of 50. The tube also says...
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    Anyone have a personal assistant or caregiver?

    Yes, I'm paranoid--some of that comes from doing therapy groups with prisoners in a maximum-security prison, doing a "good deed" but having jewelry stolen by a seemingly innocent young woman I had met at yoga class and later invited for supper. And then there was the retired nurse (friend's...
  22. T

    Allergy in bed/sleep?

    You may want to look at some websites that specialize in products to use for help with allergies. I've found this useful to get ideas about things I should check into and/or strategies as well as products that help. Very possible that your mattress and pillows are the problem. I have a...
  23. T

    EMF Sensitivities

    Court--I have seen several websites which have information re: EMF and some suggest products which are supposed to address different issues. The one that has the most information and has products that seem like a sensible way to address problems is lessemf.com (not sure of exact address but I...
  24. T

    Chamomile or Peppermint Tea - Night-time

    Yes, chamomile is a calming herb while peppermint is thought to be an energizer. Since I work to avoid anything that can keep me awake, I avoid peppermint after 4:00 PM I do seem to fail badly at walking away from the computer, usually with PR keeping me up!
  25. T

    Food dehydrators

    Loved looking at the dehydrators--I have been interested in one to do a moderate amount for use and keep on hand. I have enjoyed a meal or two a friend prepared. Beautiful piece of equipment, Old Bones. I have a fondness for kitchens and kitchen "stuff"! Seems it would take an eternity to...
  26. T

    In home sleep study

    A thought--don't some of the sports watches have apps or programs (?) or whatever as part of their deal? I mean as part of their design? I heard my son and friends discussing their sleep. Now that they're in their 40's conversation has changed :) I am sure everybody here knows more than I do...
  27. T

    How to forgive

    skipskip30--Thank for your response. Actually, my statement "good people forgive, etc." was meant tongue-in-cheek but my two little blue emjois didn't get my point across I guess! I will have to choose more wisely next time--and put on my glasses! Until the past two years I lived very far away...
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    In home sleep study

    I've had numerous sleep studies but always through a doctor who specializes in sleep issues. I had mild sleep apnea and was treated with use of an oral appliance. I had no complex issues. I lost 10 pounds and lost sleep apnea! (This is not uncommon.) Often a machine is used--common name C-PAP--...
  29. T

    How to forgive

    skipskip30--well, both--with my marriage situation I was really negative so often--just problematic in so many ways And secondly, yes, good people forgive and forget--don't they :confused::confused:??? tm
  30. T

    Speech Difficulties

    Once again, it's not just me! When I'm with others it sometimes seems that I can't get the word from my brain to my mouth or I am still choosing words I want as I am already speaking. When I am writing and or thinking about a specific topic, at times I cannot, absolutely cannot, come up with...