sarahg
Admin Assistant
- Messages
- 276
- Location
- Pennsylvania
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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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Hi Sarah G.
I don't know you as well as others on this forum, but am always interested in your posts. Also, what you offered to the CFSAC meeting is absolutely sensational. Since you need to post these in the morning, I'll offer you my thoughts tonight.
I think your photo choices are great. In your "very sick" one, you look like a queen in the midst of all those beautiful colors. Of the two you had taken today, I like the second one. It shows your beautiful spirit, but also your lack of energy. I like your cat, too.
I think you are very courageous for doing this. And I admire the thoughtfulness you bring to it.
Thank you on behalf of all of us who haven't found the words to communicate to the outside world yet. I hope you can rest in a job very well done.
Gracenote
I have made quilts in the past, and was into it quite a bit, still have the fabric and tons of magazine (quite the expense) But the interest drifted away, got into cycling, and then photography. Now that I am sick, I do a bit of crochet when my wrists allow me to.
I certainly can appreciate the work of love ofquilting, so many hours spent, and probably your grand mother used scraps off dresses and clothings etc... It is truly art.
So I had my final little fact check correspondence with the journalist and I got to see a draft of her first paragraph. She has given the info that I sent her to the head health writer at ProPublica and said it will be looked at and they will see what they can do. I've got my fingers crossed and we will see, but she sounds serious. I will let you all know when the story is out and put up a link. It's mostly going to be about my insurance, after all, but I really did everything I could to point out that if no matter what kind of insurance I had I would not be able to access the care I need and have my insurance pay for it- there are no doctors to see. I spent a fair amount of time ranting about all of the proverbial brick walls I have hit. I hope it comes through. I really just wanted to do it as a way to present them with the institutional mess that we are stuck in and urge them to report on it and investigate. I mean, just imagine what could be dug up by somebody with the funds for FOIA requests. It would be a juicy story. So even if it turns out to be a dry article about my insurance coverage I'll be happy knowing that I got them to take a look at CFS and hopefully turn over a few stones.