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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. Shoshana

    They found something growing in the lungs

    Thank you, HABS, You made my day, with that. And you inspire me too, and you probably inspire many other people, with your strength and the amount of determination and fight, you have. You go beat the disease, whatever one you have! You have a life to live, the best one you can find or make!
  2. Shoshana

    super depressed about MD's and Montoya news

    @humanrising I am sorry, that is truly and so understandably upsetting for you, and it was nice that you expressed the concern for others of us, as well, at the same time as your own disappointment and difficult worries. I wonder if you could be put right onto a wait list for next available. I...
  3. Shoshana

    They found something growing in the lungs

    I am glad you got that step behind you, of the biopsy procedure, @HABS93 (Good job on that accomplishment in itself, and thank you for letting us know , so quickly!) I hope this will lead to a treatment plan for you, that will make a big difference in your life.
  4. Shoshana

    They found something growing in the lungs

    You are welcome. You always give such positive feedback for us, as well. That's another impressive statement from you. Rings clear as a bell/:) We like having you around here.:hug: We will think of you, tonight and tomorrow! And will be glad to hear your update when you get to it.
  5. Shoshana

    They found something growing in the lungs

    It's very good to see you and to read your update, @HABS93 And it sounds like they will get a lot of very useful info for you, from this procedure. We are definitely on your side. When i get scared before a procedure like that one, i tell myself (and repeat to myself) that i do want the info...
  6. Shoshana

    They found something growing in the lungs

    I am thinking of you, @HABS93 This situation is hard, and will surely feel scary, at times. We are hanging in with you, and hoping you will feel so much better, after this difficult process is behind you.
  7. Shoshana

    They found something growing in the lungs

    Thank you for that update, @HABS93 It was good to hear from you. Hang in there. We are all thinking good thoughts for you!
  8. Shoshana

    Big birthday approaching.

    @Jemima37 Dear J, I was thinking of you, yesterday, as i think that was your birthday. Thank you for this note for me, here. I had written my post here, long before i saw that you had the other one. Sending you a hug, Shoshana
  9. Shoshana

    They found something growing in the lungs

    @HABS93 I thought of you this week, and hope that your biopsy procedure this week, at the hospital, went alright for you.
  10. Shoshana

    Big birthday approaching.

    Also, do you usually build up to this huge amount of wave of grieving, at special occasions, like the one this week, and then, do you calm some, after they are passed for now? That happens to me.
  11. Shoshana

    Big birthday approaching.

    Everything you wrote is so understandable to me, @Jemima37 :( I am sorry you feel all of the anguish and anxiety, and the worries, on top of the already extremely difficult symptoms of the CFS. :cry: It is truly very emotional and difficult. And a depressing situation and very discouraging...
  12. Shoshana

    Big birthday approaching.

    Very understandable for me, @Jemima37 I have those experiences as well. It is so difficult. I am sorry you are living with this too.
  13. Shoshana

    Struggling to attend appointments.

    Thank you for the sharing and the response, @Jemima37 We understand, the therapy is not what you need, at this point, and you do know yourself and your entire experiences, much better than we do. It is definitely true, i find for me too , that the severe CFS/ME symptoms, are the most limiting...
  14. Shoshana

    Considering brain surgery...any feedback?

    To me personally, it seems like a last resort. I would try everything else first. Including waiting to see how things go. I would myself prefer to wait and see how things go with my condition severity and with additional options that might be available, that I hadn't tried yet, or that I...
  15. Shoshana

    Considering brain surgery...any feedback?

    @Singout That sounds like a rough situation. 2nd and 3rd opinions from experts, sound good to me. That is a big and serious decision. I would seek additional medical expert input . On both, the doctors assessment that your seizures will increase without it, AND, on the outcomes of that...
  16. Shoshana

    Painful ear cartilage anyone ?

    I do have that, often, as you describe, @Oswestry I think what @Wolfcub wrote , above, about nerve endings, might be the cause, but of course, I have no idea. Just guessing. Quite painful and persistent, for me. That explanation seemed like the most similar to mine, from reading the posts...
  17. Shoshana

    Going Into Remission Again!

    That is great to hear, @crypt0cu1t
  18. Shoshana

    They found something growing in the lungs

    I agree, that was so well said by @MTpockets , and it means a lot to all of us. Thank you, @HABS93 for what you give us, the strength you show us, and the kind feedback you give us, and thankyou, @Judee who gives so much to us, as well, and as MTpockets, said it best. Thinking of you...
  19. Shoshana

    Struggling to attend appointments.

    I am tagging @Wolfcub who might want to see the updates, on this thread. Thinking of you, @Jemima37 !
  20. Shoshana

    Struggling to attend appointments.

    @Jemima37 I am glad to see you , :) even though I am sorry that the anxiety spikes, as I know it does. :aghhh: I agree with everything that @RebeccaRe said above. :thumbsup::hug: And it is worth trying to get a reply from your own doctor, about why you in particular, would probably be at...
  21. Shoshana

    They found something growing in the lungs

    Maybe you were very busy trying to distrat yourself from some of the symptoms beforehand, and now that you know for sure, they are "real" , you are noticing them differently. OR, possibly, some of the symptoms wax and wane, or are getting worse, until you start the treatments. I am sorry you...
  22. Shoshana

    Anyone care to discuss Bladder Issues?

    This is another form of the salt thing. Wee bit of baking soda, in small amount of water, I find most helpful, in middle of night, away from all food and other drinks. I wonder if a wee bit of salt in the coffee would help? To offset?? That was just a wild thought. I have no idea on that...
  23. Shoshana

    Anyone care to discuss Bladder Issues?

    That's right. They don't stand out, until we post them! :D:D:D And they seem so very complex to fix, o_O:confused:o_O until we are told how to do it. :rofl: Hurray, you did it! :thumbsup::trophy: :_:_:_
  24. Shoshana

    Anyone care to discuss Bladder Issues?

    Over on the right side, of this page we are on, in front of YOU, below the Thread Title, and above the actual posts listed, ONLY YOU , have some small symbol to the right of the "watch/unwatch" little box. If you click on those ... (that extra symbol there) then it gives a couple of options...
  25. Shoshana

    Anyone care to discuss Bladder Issues?

    If you are not salt restricted, then putting a bit of baking soda ( 1/8 to 1/2 teaspoon) dissolved in a small amount of water (1/2 cup ) and drinking it alone, away from eating times, calms my bladder quite a lot.
  26. Shoshana

    They found something growing in the lungs

    Good thinking! :rofl::rofl::rofl: Now there's some added motivation for you to kick butt! :thumbsup: After you are better, i will become a fan and root for them for and with you. Until then, all hands on deck, rooting for YOU ! :)
  27. Shoshana

    They found something growing in the lungs

    It was great to see you had written a follow-up for /with us, @HABS93 Thank you. I felt upset for you, after that news, but yes, you are strong and can fight this, step by step, and we are in your corner. You have been good and kind, back to us, and i remember that, too. There is a lot of...
  28. Shoshana

    They found something growing in the lungs

    Oh my gosh, @HABS93 That is an awful shock. Thank you for telling us. I was thinking of you, today. That would account probably, for everything, that was NOT in your head, so onward with whatever treatment plan is best.? Very sorry you have to deal with this. We are all rooting for you!!!!
  29. Shoshana

    vit d making me sick?

    I have wondered at times, if different people actually should have different levels for themselves, and if maybe more vit d is not good for some, while is perhaps needed for others. Of course, I have no answers to my quandaries. I did find, as @YippeeKi YOW !! that the only type i could...
  30. Shoshana

    They found something growing in the lungs

    I have been thinking of something very similar, about you, for the past 24 hours. That I hope that they do find something specific and treatable, so that you can then take the treatment, and then get actually well! That is my vision and my hope for you, @HABS93 There must be some doctors who...