Discussion in 'Action Alerts and Advocacy' started by Cort, Aug 10, 2009.
the very sick one, I have ones that are less cheerful and more jarring...but cheerful seems good
today. I haven't decided which of these.
As uncomfortable as I feel being a "media message", I hope I am sending the right message and that this turns out ok and raises some awareness.
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.
What gracenote said. Thanks so much Sarah.
Sarah, thanks for sharing your pictures!!! Remember that this is an invisible disease and since I don't know you, I see you knitting in bed- ! can't see your pain, your symptoms and how long you were in bed for.
I am not writing this as a critic at all, just an observation- It makes me think of Gina at Dr Oz today, she looks fine to the untrained eye.
Again thanks for letting us put a face to the person that is talented with her words.
ETA: I wrote this not seeing your sick picture, and indeed there is a difference with the before. Big hug to you.
What Gracenote said
And I like photo number two the best - just perfect.
Gracenote, Islandfinn, Kati, Marylib
Thanks for all the kind words and advice! much appreciated!
I sent it all off, with a thank you note, a plea to investigate the institutional status of this disease further, and a list of sources and documents to get her started if she goes for it.
We will see what happens, I'll keep you all updated if I hear anything else or when the article is published.
Again, thank you guys all for the encouragement as I irrevocably "out" myself in the national media. Let's hope it gets us somewhere!
Sarah I couldn't help but notice the beautiful quilts in the background or on your bed- is there a quilter in the family or perhaps you are a quilter?
A quilter I am not, the one on the first couch (yes- they are both actually old fashioned "convertible sofas", they fold out like futons but are very unassumingly couch-y when not folded out, but very comfy and bed like when folded out) was made by one of my friends in Maine, the one behind the second couch is actually just the an unfinished quilt top that was made by my greatgrandmother. My mom and I made a wooden frame and stretched it over it (kind of like a canvas) when I was little. We have a lot of finished ones that she made and they are beautiful, but really starting to wear. Are you a quilter?
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.
I have come to late to this thread but I just want to say that you are a lovely young woman! It's interesting that the same pic.s which illustrate the illness also show your beautiful bone structure and your lovely hair.
Thinking good thoughts about treatments and remissions so that you can take that lovely young woman out into the world!
peace ~ like your t-shirt!
Even better, my great grandfather ran a feed store! (along with a chicken and dairy farm, and a chicken hatchery) Bags of feed for animals used to come in all sorts of pretty patterns so that people could reuse them to make clothes. So I think there were a lot of instances where he would take things out of big bags, keep the bags and sell them in smaller quantities...they're all made entirely of feedbags!
Koan, thank you, you're so sweet...I've got my fingers crossed for that relapse!
One day I took one of my quilt to show my grand-ma (she's 96 today) at her nursing home. I could see her eyes light up when I showed her my work, and told me the story of her and her mom making quilts out of clothes- it was depression time and everything was precious- they would line the quilts with paper journal. My grand ma had 16 kids including one that died of polio.
Wow Kati I bet your grandma was proud! I've always had a deep reverence for the ability to seemingly make something out of nothing and that is it! I bet those quilts your grandma made were a lot like my great grandmother's in that the seam allowance is next to NOTHING so as not to waste a fraction of a centimeter of cloth. I think this side of my family was pretty lucky in the depression because they had the farm, it was paid off, and they were therefore self-sufficient. My grandma remembers bringing apples to school for other children who were not so lucky. It is something I can't help but think about when I pick an apple from one of those trees (2 out of 4 are still going!) The other side of my family is all immigrants so it was a very different story for them.
Anyway, I meant to write this to update on the news situation, I just couldn't help but have a tangent first, so sorry I hope you read this far.
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.
Bravo to you for doing this! I'm sure it was a lot of work for you but it seems like it was worth it...you seem to have a knack for advocacy. Please keep us posted on the story!
here is the article
It is the bland public policy insurance article I expected, similar to the others in the series, very informative about insurance reform. (you should read them all if you can). A couple of minor facts got turned around (like when I got diagnosed) but I don't really care- it's my fault for not answering the fact check fast enough due to total lack of brain power!
so I can't complain. I'm kind of bummed my comparative effectiveness questions (how would that impact emerging and misunderstood diseases?) didn't get brought into it, that was what I really wanted addressed...but I think that was something there is no answer to at this time.
The good news is, the journalist asked a lot of questions that had nothing to do with insurance, and was very interested in my responses and questions. What is covered in the article was but a tiny fraction of what we talked about. That was the point really anyway- to make them want to do other articles later.
I think that sending emails may be better than leaving comments, that way we won't detract from their health reform issues and also because emails may well have more impact, but that's just me. Later on today I am going to find the email to contact their health department, maybe in a week or so (I think they still have one or two more articles in this series to finish) we need to make an effort to urge them to investigate the government and healthcare "system's" handling of this disease.
They have in hand the sources that I sent them (found on the first or second page of this thread) and will need to know it is of importance to people, and that this would be a great public service as they could access documents we will never get our hands on. It could spark the congressional investigations we hope for and could help shake up the CDC leadership. More on my thoughts later...my hands feel like they are rusting and my brain hurts!
Thank you, sarahg! Rest up now!
I am so impressed with your participation in this, the background info you gathered and presented, and your follow through. All those details! Thank you so much. I didn't really understand what you were trying to do, but now that I've read the article, I'm very appreciative of your efforts. Good job. Rest well.
Oh! resting- I am indeed! not so much related to this project, but I am in a big crash nonetheless. I've just been trying to do too much around the house and with friends and stuff. You know, fighting the inevitability of my inability, so to speak . My brain is quite subpar but I really just wanted to stop and say...
to every single one of you that cheered this on. Without it there is a very good chance that towards the end I would have just dropped off the face of the earth rather than finished giving her all the info. so again, THANK YOU!
I really will get those email addresses up as soon as I feel up to the task. Maybe even write a "sample" letter if I get really into it...but I don't know if that's going to be possible.
I know it's silly, but I've been too nervous and/or shy to show it to my family or close friends thus far. I'm not really sure why? I think I hate pointing out to people that I'm on welfare, even if they know, even if they're not judgmental, etc.etc.
I've always been all about welfare for people who need it and yet, I've felt a lot worse about...for example... people staring me down and looking me over for using food stamps, or even examining my food choices, or taking out a medicaid card (trying to figure out WHY I need them) then I ever have about people judging me for being sick. (even if in the end it's pretty much all the same thing) I guess (lucky or unlucky) I've encountered a lot more welfare hate from people than I have CFS hate.
Ok that was a brainless rant...sorry in advance if it stopped making sense somewhere along the line there.
You can also try a Google Site Search
Separate names with a comma.