• 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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  1. keepitreal

    Comment by 'keepitreal' in 'Survey for the Chronically Ill (When it Comes to Cooking!)'

    there are two sections. the first section is for everyone who watches my channel (which is a gluten free channel with other recipes too); the second is for folks who live with chronic illness/invisible disability!
  2. keepitreal

    Survey for the Chronically Ill (When it Comes to Cooking!)

    hi all, i make cooking videos for my youtube channel that are health-conscious and reflect recipes and lifestyle changes that have helped me manage symptoms over time (for example, gluten free, sugar free, SCD, etc). i've shared a few of these videos here, especially from the "cooking with...
  3. keepitreal

    Comment by 'keepitreal' in 'Recovery is possible!'

    checked out your blog--good work! i find that diet plays a huge role in my daily wellness too. in fact, i have a youtube cooking channel devoted to naturally gluten-free, real foods recipes (with some side episodes devoted to cooking with chronic illness on those low energy days). left you a...
  4. keepitreal

    Day Of Visibility Activism: From the Couch Keepin' It Real

    so far i've posted two episodes in a series called "cooking with chronic illness" to this forum, which are part of my overall cooking channel on YouTube http://www.youtube.com/user/AriyeleKeepinItReal why i'm writing though, is that i made a video for the annual "Day of Visibility" and wanted...
  5. keepitreal

    Cooking with Chronic Illness: Tips and Recipe

    i make videos for a youtube channel that are geared towards those folks who are living with chronic illness and need validation, tips for cooking nourishing meals that require minimal output, and recipes that are gluten/dairy/sugar/processed food free. this was the second installment where i...
  6. keepitreal

    Comment by 'keepitreal' in 'Valcyte 2013- Week One'

    yes, and yes. i was on the high dose for the first three weeks (as i mentioned above, alongside the famvir--also at a high dose) and my labs were more or less ok throughout. nothing that alarmed anyone (even when it was a bit off in the beginning). however, by the end, everything was in range...
  7. keepitreal

    Comment by 'keepitreal' in 'Chronic Illness friendly Cooking Show'

    hi sheryl! thank you so much for the kind words. yes, i do know what we live with. very intimately. and my hope with the show is to share hope (i'm SO much better than i was, though this is changing), share humor (so that people who are home and can't get out feel entertained), share my...
  8. keepitreal

    keepitreal

    Due to improvement with anti-virals I launched an online (gluten-free) cooking show in order to share hope through my own story, nutritious food, entertainment, and validation. "Cooking with Chronic Illness" is aimed specifically at folks who have low energy and want/need to cook without...
  9. keepitreal

    Chronic Illness friendly Cooking Show

    hi everyone, i wrote in a separate post about my experience this past year taking valcyte + famvir. today is the 1 month anniversary of my stopping them, and my functioning has been dropping consistently since getting off the drugs. i used the available energy i had in the best month of the...
  10. keepitreal

    Comment by 'keepitreal' in 'Valcyte 2013- Week One'

    good luck! today is the one month anniversary of my ending valcyte (i also took famvir at the same time). no one prepared me for how good i would feel being on the meds. i never had any crazy side effects. in fact, i improved with every month of being on it. since stopping, i've declined...
  11. keepitreal

    Famvir and Valcyte treatment experience.

    once a month as of now. i had been getting it once a week.
  12. keepitreal

    Famvir and Valcyte treatment experience.

    hi heapsreal on the whole, i do not feel worse than before i started the av's. on the whole, i actually feel better than before i started them. i was not expecting this response, and so it's been quite welcome. from reading other threads on this site, and from talking with a few people who i...
  13. keepitreal

    Famvir and Valcyte treatment experience.

    wanted to give an update on my status in case anyone comes to this post and reads it and wants to know more about my progress. (as i said, it's hard when i read people's updates and then they disappear). today is my 1 month completed of valcyte and famvir and i have not stayed as good as i...
  14. keepitreal

    13th week of Valcyte

    when you say that you feel fine, but not all the way well, what do you mean? what makes you feel "not all the way well?" i read back over some of your older posts to get myself more up to day with your process. you mentioned feeling like you still have "immune issues," do you still feel this...
  15. keepitreal

    13th week of Valcyte

    how are you feeling now that you've been off it? what is your detox regimen? you were able to exercise while on the drug? i'm taking valcyte and famvir at the same time. yesterday was the completion of the first week. i feel amazing. i have more energy and no sore throat, which is a miracle...
  16. keepitreal

    13th week of Valcyte

    undcvr! your posts are inspiring. i too have made ground up changes to my diet, experienced the most improvement when i focused on detoxing my body (lymphatic drainage massage worked amazing wonders for me) and have improved my functionality by boat loads with the right supplements, herbs...