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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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  1. Sue C

    ICD-9 Codes / Diagnosis

    MEG, Am another RN. worked until longest I could keep a job was the initial two week stage orientation. Then quit on my own due to physically dropping items or realizing slower response time should not apply to position. By that time was only a part timer and SSDI goes back @ 10 work quarters...
  2. Sue C

    Cardiac irregularities and a useless cardiologist

    Know how it feels, Tulip. to have cardiac symptoms either minimalized or have antidepressant reccomended. Remember Cheney research on cardiac issue. Am in mid-move to another apt but can google it. Am overwhelmed at times with appearance of new symptoms or relieved at ones not present (yet)...
  3. Sue C

    Schutzer, Natelson study of XMRV in CSF article

    As a mod-severely limited medical professional w/this illness, I had severe incapacitating migraines in my initial group of symptoms later dx's @ Cheney clinic plus Qeeg brain mapping. By that time my cognitive deficits were there to live with now for years. Dr Natelson is a bright neuro...
  4. Sue C

    Comment by 'Sue C' in 'Empty Sella Syndrome: A Proposed Patient Study'

    Very interesting discovery...was dx'd by Paul Cheney MD and was his pt for several years. No MRI only sinus series as primary migraines existed first two years....probably the initial viral component but my ssdi case stated HPA axis dysfunction. Did undergo QEEG brainmapping with Dr. Myra...
  5. Sue C

    Article: Who cares that I feel like crap? Not me (anymore) by Suzanne Wigginton

    This is an intense thread, due to emotions raised when one tries to express their innermost experiences. Somedays, cannot even read the Forum as am too sensitive and reactive. It has been the nature of the beast. Can see the truth in the many comments given. Yet, have found honesty and...
  6. Sue C

    Comment by 'Sue C' in 'Be-ing and Accepting (Quality of Life Blogs #2)'

    Me, too, Cort. Today responding is quite complex for me but your effort with this valuable topic means so very much to read and absorb. Sure, in all these years, so many efforts to treat what ails, but to acknowledge that simplicity which is running parrallel to a sometimes miserable, painful...
  7. Sue C

    Being and Thinking: the Quality of Life Blogs Begin :)

    Thanks, again Cort. It has been my ongoing effort to use what tools I have learned over the years to 'quiet the mind'. Even knowing not just believing, it is still a challenge as you wrote with all of the nervous system, etc involvement. Not able to write often...
  8. Sue C

    Cerebral blood flow is reduced in CFS as assessed by arterial spin labeling

    In following this thread, can see why it has been such a slow process, although unacceptable from a pt perspective. Due to long term cognitive dysfunction, I am grateful to Rich, Cort et al and agree that the difference in PhD and MD is pertinent. My background in Nursing +20 years in hospital...
  9. Sue C

    Article: Christmas XMRV Video - Giving Hope and Thanks This XMAS

    Thanks Village Life for the reminder. A quote that I recently read:: 'If you feel your lamp is lit: wonderful. Because it should be lit. Know. Do everything to make sure that your lamp is lit, that it stays lit. And make sure that there is never darkness in your room." P. Rawat Although, in...
  10. Sue C

    Sue C

  11. Sue C

    Up Close and Personal at 2010 NJCFSA conference

  12. Sue C

    NJCFSA Conference with Dr. Mikovits Oct 17th

    Up Close and Personal at 2010 NJCFSA conference Hi everyone, It has been a long while since posting. Yesterday, had an early birthday present attending the conference. It was 'packed' with families and as noted those from WPI, including VIP lab member who is in front lines of XMRV...
  13. Sue C

    Webinar on Chronic Pain Conditions & the Overlapping Conditions Alliance

    Have restrained comments re CAA before as too angry with years of avoiding patients' priorities...but this! Another example of 'dilution' by overlap or grouping of such conditions tends to make them LESS significant. Time has been wasted and money down the drain while we suffer from misguided...
  14. Sue C

    Dr Peterson retiring from medical director at WPI

    True, danib..... and I second Tina's emotion. Remembering what hx I can about the Incline Village outbreak when both doctors Peterson and Cheney became involved. There they were out of Air Force? I think and starting their practice in an idyllic mountain resort setting. It almost reads...
  15. Sue C

    bit by a tick, suggestions welcome

    Hi Sarah,,,am so sorry to hear of your current crisis. Can tell in your posting that even though you are upset, you are trying to be objective. During years of counselling on how to deal with chronic illness, and other life's major changes, my therapist had a chart where we prioritized...
  16. Sue C

    Comment by 'Sue C' in 'Lightning Strikes a CFS Patient'

    Dear Gracenote, You have a calming and nonabrasive way of giving a reality check when topics can send one into hyperexcitability. Not in anyway, Cort's intent on sharing this story of anothers path to recovery. Being one who has experienced the connection...
  17. Sue C

    Low dose Naltrexone

    Thanks for your kind reply, Sushi.. You have been very informative in sharing your LDN experience. Am seriously considering a trial , hopefully this year. As others have stated, one wonders the best time to introduce a new med to the arsenal. I know which meds have been 'safe' for me the...
  18. Sue C

    CAA recommends, to me, questionable article on pacing. March 2010

    thanks Tee and a hug back to you...will check CBD thread Sue C
  19. Sue C

    CAA recommends, to me, questionable article on pacing. March 2010

    hi...just catching up on this thread. It is with emotion that I respond, tears that I can see how strong we are in our truth. Many years, I pushed myself beyond physical and mental limits trying to prove that I wanted to get well. If damage was done, it was due to being encouraged to pursue...
  20. Sue C

    Low dose Naltrexone

    So much info on this forum....had visited the LDN site a while back on Yahoo but as many, can only focus on a few things. If I want to implement a new tx it takes a bit of effort, energy and time...so many years so much pain and suffering....have read most posts here related to LDN and feel...
  21. Sue C

    Comment by 'Sue C' in 'Clearing out the Trash'

    Hi Vicki, Just want you to know that I find your blog/posts extremely relatable to where I've been and am cuurently inhabiting. Thanks for sharing your difficult moments and the upbeat. Your gardening images remind me of past herb and flower gardens that gave me pleasure during days too ill...
  22. Sue C

    Comment by 'Sue C' in 'Clearing out the Trash'

    Hi Vicki, Just want you to know that I find your blog/posts extremely relatable to where I've been and am cuurently inhabiting. Thanks for sharing your difficult moments and the upbeat. Your gardening images remind me of past herb and flower gardens that gave me pleasure during days too ill...
  23. Sue C

    In need of a new doctor, I live outside of Philadelphia

    finding a doctor Hi there, Am very moved by your story. How exhausting, it is going through many years of trying to get answers and a treatment plan to help you gain balance and stability. I became ill with a gradual onset in early 1990's, had a great nursing career, went...
  24. Sue C

    A Visit to Dr. Peterson V: Tests and the CFS/ME Bond by Corinne (conclusion)

    thanks for sharing As one who has been through similar experiences with dx testing, I am grateful to Corrine for all the info from her doctor visits. It is a huge effort especially travel, to get there! After I became ill in 1994, I went to the Cheney clinic for dx tests and tx. It...
  25. Sue C

    Neurological link and Music

    Today on CBS Sunday Morning,there was a story about singer Melody Gardot. She was hit by a vehicle while riding a bicycle a few years ago, suffered massive injuries including TBI, Traumatic Brain Injury. One of her doctors of neurology suggested music therapy to help her rehabilitate her...
  26. Sue C

    Medical Marijuana set to be legalized in NJ

    Hi All Happy to be able to post since lapse during new format. Since pain has been one of my top 3 symptoms, have kept up to date as possible with alt or conventional txs targeting pain. This week, the New Jersey State Senate and Assembly signed the bill to legalize medical marijuana...
  27. Sue C

    I tested Negative

    test results Hi impatient, It is still so early in terms of what will be discovered. If Nancy K. suggests waiting to test....I can try that, Remember RNase testing ?...my result was low having been ill for several years when tested. Dr. Cheney had explained that I had a lower...
  28. Sue C

    The Onset Poll

    Another gradual onset..... Hope its ok to comment re: my answer to the poll. It was gradual. with severe migraines, possibly the encephalapathy for a couple of years while continuing to work. Then, after no clear medical reason given for my increased viral symptoms, cognitive fog and sleep...
  29. Sue C

    Dating...

    Thanks, Jen, for the NYTimes link re: man who stepped beyond his limits and connected to another...so touching. Just watched "March of the Penguins" a second time this week. The narrator says its about surviving, and most of all, the power of love. Another nite of the Empire State building in...
  30. Sue C

    Dating...

    So it is what it is... after weeks slowed to a near halt, am uplifted and even amused by the candid, heartfelt contributions. Its like old war buddies sitting around the campfire but in this case smoke and marshmallows aside. Thanks, Chris, for your start with this thread as my holiday induced...