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

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  1. Jessie~

    Housing or Section 8, etc in the USA

    Yes, that was exactly the reason. Federal $. But I knew I couldn’t hide it, because there was so much proof of it in doctors paperwork and the state licensing. And when on assistance programs, you are constantly reminded of fines, jail time, and all of that much needed help that will be taken...
  2. Jessie~

    Housing or Section 8, etc in the USA

    Here is a screenshot that I took today from Michigan’s MiBridges website. It says that the waiting list for Housing Choice Vouchers will be opening soon in 61 counties! On March 22, 2023. I thought it might be helpful for some (in Michigan) if I post this here to let you know of the opportunity...
  3. Jessie~

    Amazon Smile Ending

    I use Amazon Smile, and Phoenix Rising is my chosen charity. I was really mad when I read that they are taking it away. I don’t think I will participate in it any longer. I feel bitter about it right now.
  4. Jessie~

    Housing or Section 8, etc in the USA

    Just a side note to share about Section 8 housing vouchers: About 12 years ago I applied for Section 8, and after a waiting period I was accepted and getting set up to receive it. I went to a meeting with others who were being accepted to go over the rules. Around that time I had also recently...
  5. Jessie~

    Ladies, do you feel worse before your period?

    This has been a problem for me for awhile. Especially physical and cognitive fatigue. My brain fog and cognitive processing is consistently so much worse for the week before my period, and as soon as my period starts I have a little more clarity and my cognitive functioning is back to my...
  6. Jessie~

    Questions about heart rate monitoring

    Sorry about that. The dash in front of my name has been a pain for me too, and I’m sure for many others who have had to tag me. I have happened to catch people tagging me using multiple forms of other Jessie’s user names accidentally, only because I was already watching the threads that they...
  7. Jessie~

    Questions about heart rate monitoring

    I know this thread hasn’t been active for awhile, but I wanted to add an update regarding the Mio Alpha 2 wrist heartrate monitor that I posted about in this and other threads. As far as I can tell, there is no longer an app available to support or work with this device. So I have lost all of...
  8. Jessie~

    Struggling bad about getting Covid Vaccine

    I am struggling too! I keep deciding to make my appointment soon and get it over with, no matter what, how bad, or how long the side effects last. Then I get worried and put it off again. (Ultimately I would like to avoid Covid AND avoid any long term or lifelong Covid vaccine effects). I feel...
  9. Jessie~

    I have this hope for making a healing center for ME/CFS

    I’m wondering... Considering all of the ideas posted in this thread so far, how much land would be needed?
  10. Jessie~

    British Shows

    There are a lot of shows that I enjoy watching on PBS too (British and American). That calm and quieter factor also works well for me, although I still watch a mix of American shows and movies. I only do free TV, but I have a Roku streaming media player and have found so many shows and movies to...
  11. Jessie~

    A symptom I didn't tell my doctor but should have: phantom smells

    My experience has been a little different than the pleasant versus unpleasant phantom odors. Instead, about 4 or 5 years ago, I began occasionally experiencing phantom smells that are attached to my memories. You know how a smell can cue a memory? That is what I have been experiencing... I smell...
  12. Jessie~

    Struggling to attend appointments.

    @Jemima37 I am hoping that this post can bring you (a little) relief... I just turned 40 a little over a week ago. I have not had a smear/"female physical" done since fall of 2014, for various reasons. So that is almost 5 years. Here in the US, I believe that I was always told that it is needed...
  13. Jessie~

    anyone try Mayo or Cleveland clinic?

    To be fair, it was a mixed result. They did help with a couple of other health issues and also let me down with a couple other health issues. But I did get some benefits. Example: One of the tests ordered helped me to finally know that after over 10 years of suffering painful symptoms, I needed...
  14. Jessie~

    anyone try Mayo or Cleveland clinic?

    I went to the Cleveland Clinic about 6 years ago. It was 7 months after I received my "CFIDS" diagnosis, but as is common, I had been living with it unknowingly for many many years prior to that. I did not go specifically to investigate CFS. I saw around 7+ different specialists about multiple...
  15. Jessie~

    Questions about heart rate monitoring

    @I love lamp, I messed around with mine today to try to find an answer for you. There may be 2 reasons why your audible alarm (beep) isn't working... *1. Make sure the correct alarm that you wish to use (Audio Notification- beep, LED zone lights, or both) is turned on. Here are 2 screenshots...
  16. Jessie~

    Watching Unrest again, I'm noticing something.

    I always sit like that too. Legs and feet elevated, making my body more into a horizontal and compact position from my head to toes. Knees bent, legs crossed at either thighs or shins, sometimes at ankles, or if trying to sit more upright I have my legs crossed at ankles and feet under me. I...
  17. Jessie~

    Anyone seen Dr Conley in Michigan?

    I can't figure out what INIM stands for.:oops::thumbdown: Could you tell me? Thanks in advance :)
  18. Jessie~

    Anyone seen Dr Conley in Michigan?

    Two years ago I spent about two months playing phone tag with him. He left me a message describing the length of time for the initial consultation, doing a lot of testing, then having a follow up after all the results came in. I was having a lot of increased cognitive and communication issues at...
  19. Jessie~

    Are there skills from your education or career that have helped you as an ME/CFS patient?

    There are 2 jobs from my past that have helped me with this illness... 1.) I was a Home Health Aide for about 6 months while in college. 2). After FINALLY earning my degree and graduating from college, I was a COTA (Certified Occupational Therapy Assistant). After so much work and effort to...
  20. Jessie~

    What would you be doing if you weren't riddled with ME/CFS

    I would be working as a COTA (Certified Occupational Therapy Assistant), like I used to. I would be volunteering and advocating in a variety of settings and also helping out family, friends, and strangers. Lots of Travel and Road Trips, Road Trips, Road Trips! Beach days, and walks in the woods...
  21. Jessie~

    Anyone quit their benzo or would like to?

    I chose to quit using mine around 6+ years ago. It was rough. I have many health problems, limitations, and symptoms from ME/CFS and my other diagnosis',... but that med and the side effects from it are no longer a factor in all that I have going on. I'm really glad to be off it.
  22. Jessie~

    News Report: 1 million Americans suffer with Chronic Fatigue Syndrome

    Ugh, that was disappointing to watch. Do those people really expect to be taken seriously in their professions? Argh!!! :mad::bang-head: I guess some of the things they said were correct, but they did not seem to be taking the topic or information very seriously. The way they were acting was...
  23. Jessie~

    Questions about heart rate monitoring

    @Kenny Banya, I haven't figured out my resting heart rate yet. But once I get this monitoring figured out a little better, I will try to remember to post it here. @Sidney, thank you for the information on the Oximeter and Heart Rate Variability test. I will look into those too. Good luck to you...
  24. Jessie~

    Questions about heart rate monitoring

    @Sidney I also just started using a HR monitor last week, and I agree with your post about continuing use for any benefits I can get from it. Sorry, I do not have an answer to your Fitbit Charge 2 question. I am using a Mio Alpha 2, which has options to have an audible alarm when going over...
  25. Jessie~

    Brain MRI for ME Patients?

    I have had MRI without contrast and then years later with contrast. The first one was supposed to be with contrast, but my insurance wouldn't cover that at the time, so they did it without contrast. It showed a lesion in my left frontal lobe, and that Neurologist told me it probably correlated...
  26. Jessie~

    Things I'm grateful for, feel free to add

    I am grateful that I have a diagnosis and disability income. Life was physically and emotionally way more miserable when I didn't know how sick I was and kept trying to push myself through everything every day. My efforts to catch up and keep up with "normal" made life worse for so many years. I...
  27. Jessie~

    cystoscopy.

    I have had 2 so far. I have no symptoms or complaints in that area. There has been blood in my urine (not visible) for years and that is why I had to start going to a Urologist. The cystoscopies are not exactly pleasant, but they are quick and no pain, IMO. But it has become frustrating because...
  28. Jessie~

    What do You think is your most disabling symptom?

    Cognitive, Fatigue/Stamina, and PEM. These are constants that limit everything every day. I can deal better with all of the different types and locations of Pain as long as it fluctuates and there is occasional relief.
  29. Jessie~

    How do i learn my limits

    I love everyones tips. Good stuff! I put a lot of thought and effort into learning my ever-changing limits and am constantly making tweaks to my life to try to find the balance too. I wish that I were more successful at this. It often feels like strategizing daily life with this illness, just to...
  30. Jessie~

    Does anyone else have an extremely exaggerated startle response? Need help with this.

    This exaggerated startle response issue is a problem for me too. I do not have any answers to offer as to why it's happening though. It is definitely not fun :(.