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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. sissypop

    Flu vaccine and ME/CFS - MEA info leaflet for 2017 - 2018 vaccine

    I think this needs a timely bump.
  2. sissypop

    Considering flu shot

    I got the flu shot day before yesterday. I’ve avoided it for years but have gotten so sick the last two winters that took months to get better and even then don’t think I got back to point before getting sick. Thought I may as well try. So far just a little sore around area of shot.
  3. sissypop

    In memory of Jasper80

    Rest In Peace sweet soul. You truly were a sweet soul. I just re read your guilt thread.
  4. sissypop

    Time to stop work?

    Yes @DoggerFisher we could! This is such a great thread and I want to thank @nettle_tea for starting it.
  5. sissypop

    Time to stop work?

    I know, if I quit work I think people will think even less of me. If I keep working they will think “ see she’s not sick”.
  6. sissypop

    Time to stop work?

    Oh @DoggerFisher i so understand. The fact of not looking sick and the fact I’ve pretty much given up on doctors make everyone even more skeptical. “Yeah, she’s mentally disturbed “ ;)
  7. sissypop

    Time to stop work?

    I totally understand. I worked in accounting for years and years. Work 50+ hours a week most times and always had work backlogged because they wouldn’t hire enough people but I made very good money until I just couldn’t keep up that pace anymore. My elderly parents need caregiving so I moved in...
  8. sissypop

    Time to stop work?

    I’m in the same dilemma. I’m still working but it is so hard. And it’s all I can do. I’m always skirting around being fired for too many missed days. I don’t really make enough money to “live”. Like I said it’s all I can do ( more than I can do to be honest) and I have no energy to clean my...
  9. sissypop

    How young doctors view us?

    Yes we have put doctors on a pedestal, kissing their ass or ring or whatever Because we thought they had the power to give life or take it away. My generation and family especially believe this and doctors in my area don’t consider ME a real disease and think that it is all in your head and you...
  10. sissypop

    ER refused to treat me

    OMG. I am so sorry for everyone having experienced this. I went through a similar experience with the ER and it's so soul destroying. Mine wasn't as bad as some here. But it affected me greatly, still does. Even the way they look at you with such disgust. Like how dare you come in here faking...
  11. sissypop

    Grocery Delivery--Target (US) and other options

    Kroger and Some of their umbrella stores, Fred Meyer, Frys, Ralph's, Dillion's, Smiths, Harris Teeter, King Soopers etc offer delivery and/or pick up but not all stores.
  12. sissypop

    Huge energy today with Grapefruit and Ubiquinol (Coenzyme Q10). We'll see about tomorrow.

    @Mary I'm no longer doing the grapefruit with coq10. Stopped about a week to ten days ago. Initially I thought it had a negative effect but now I'm not sure it was the grapefruit coq10 combo. I was having a lot of trouble sleeping at that time and that always has a big negative effect for me...
  13. sissypop

    Comment by 'sissypop' in 'Is there really “mild” cfs'

    I agree with snowdrop. I consider myself mild compared to some others affected by it. But if I would compare myself to a totally well person it would be an entirely different thing. I've often said if people I know that don't really understand this ( which is really everyone I know in real life...
    • sissypop
    • Blog entry comment
  14. sissypop

    Huge energy today with Grapefruit and Ubiquinol (Coenzyme Q10). We'll see about tomorrow.

    I'm still doing this. While at first I thought it might be having a negative effect I think now it was probably coincidental. But haven't had any noticeable improvement either. I'll still take it until at least I run out of it any way. And the grapefruit juice is good for you. Both should be...
  15. sissypop

    Huge energy today with Grapefruit and Ubiquinol (Coenzyme Q10). We'll see about tomorrow.

    I wanted to report in. I'm still doing this everyday. I've not noticed any difference but I am in kind of a bad slump now as I mentioned before. I hope if I keep at it it will kick in.
  16. sissypop

    Huge energy today with Grapefruit and Ubiquinol (Coenzyme Q10). We'll see about tomorrow.

    I did not have a good night at all. I don't know if coq10 and grapefruit juice played much of a role though. I stayed up too late and it seems when I do that then I'm awake really really late and can't fall asleep. Then when I do fall asleep I wake up a lot. I feel terrible this morning and...
  17. sissypop

    Huge energy today with Grapefruit and Ubiquinol (Coenzyme Q10). We'll see about tomorrow.

    Since this appears to make me drowsy I'm going to take this tonight. Although I'm not sure when to take it, I want to stay awake for Marshall WVU March Madness.
  18. sissypop

    Huge energy today with Grapefruit and Ubiquinol (Coenzyme Q10). We'll see about tomorrow.

    Second day of coq10 and grapefruit. Went back to bed after taking it first thing morning, but only for 1 1/2 hours. Might not be a good time for me to trial it either. I haven't slept well for a while now and am very tired. I did slept pretty well last night and my naps.
  19. sissypop

    Huge energy today with Grapefruit and Ubiquinol (Coenzyme Q10). We'll see about tomorrow.

    I was so excited to stumble on this thread! Thank you @BeautifulDay . Unfortunately my first try of this this morning sent me back to bed for a 4 hour sleep. This is usually the case for me, I read something that works for someone and I get so excited. Then it does absolutely nothing for me or...
  20. sissypop

    Is anyone else terrified of catching the flu?

    I've had the flu since December 18. I'm still sick. I've been to Urgent Care twice and the E R once. I've had tamiflu, 2 rounds of prednisone, 2 rounds of antibiotics a truckload of otc medicine. Nothing has seemed to help. They diagnosed me with acute bronchitis. Maybe I would be worse if I...
  21. sissypop

    "Unrest" viewing schedules on PBS

    Tonight. Monday 1/8 10:00 pm est Tri State Ohio/Kentucky/West Virginia.
  22. sissypop

    My Airbnb Situation..

    Yes wonderful idea. @Misfit Toy could "just so happen" to have a display of certain jewelry that she may think would appeal to a certain guest or occasion in plain view when they come. :)
  23. sissypop

    My Airbnb Situation..

    Thank you. I'm so happy you found a way to make some money. I've read many of your posts and admire your fight and grit toward this disease and all the crap it brings with it.
  24. sissypop

    My Airbnb Situation..

    This does sound wonderful. When I was well enough to travel to the beach I loved staying at b&bs in old historical houses. My only concern if I were to do it in my own home would be I would be concerned about letting strangers into my home, especially at night while I'm asleep! :nervous...
  25. sissypop

    How to help

    Yes this. While some, myself included, sometimes have a hard time coming straight out asking someone to do such and such for me. But often times I do drop some not so subtle hints at things I need or want. Like my kitchen faucet has leaked for months. I have it rigged so a pot catches most of...
  26. sissypop

    MEA website survey on Weight Change with ME/CFS (September 2017)

    Large increase. I blame multiple factors. The lupron injections I took, which I believe triggered my me, put me in menopause. So hormonal changes there. Also big drop in activity all I could do is work my job and go home and eat and go to bed. Crashed all weekend. Plus doctors were throwing all...
  27. sissypop

    Cravings when fatigued

    Yep. Notice a big difference in appetite and feeling worse. I've steadily felt worse since December and have gained 15 pounds since then. It seems I'm always starving now. Very frustrating.
  28. sissypop

    Severe crash

    I was told to follow up with appt with my regular doctor within 2 weeks. Well he can't see me for 2 or 3 months ( all booked up ) So I have an appt with his P.A. They will have all they records from my hospital stay so I am going to wait and see what they say. My regular doc wasn't available...
  29. sissypop

    Severe crash

    Oh they thought something was wrong alright. They thought I had overdosed on some drug that miraculously slipped through their blood screen. To say I was beyond insulted was an understatement. Now I realize the area I live in has one of the highest rate of drug abuse in the country. And that...
  30. sissypop

    Severe crash

    Oh I know. I had a doctor once tell me "hey we're all tired". I really gave up on doctors for several years after trying every prescription they would throw at me hoping this will be the one that will make me well! Not! I am going to try and see about that doctor in Ashland. But other than...