Ok, so I just figured out why some comments were vaporized after I just vaporized another 25 comments by accident!!! I just learned the hard way that I freaking HATE the new dashboard layout for WordPress.
HATE.
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This is something I hope we all can agree on:
Next January, the political leadership of the United States will change significantly. It is important that the candidates who seek to lead the country after the Bush Administration define their objectives and what they plan to achieve not with vague language but with clarity.
But each of us will have to read the full speech, and the positions of the other candidates, and decide whether we agree with the objectives and methods.
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I’m not sure what happened, but at some point yesterday all the comments going back to mid-April were vaporized. It’s not my fault. Mr. Tumblyday was doing something on the server yesterday, and I don’t know what happened. He’s the geeky one in the house. Anyway, feel free to offer theories, but know that I’ll just pass them on to him because I don’t understand most of this crap!
My apologies to all of you who had comments disappear. It was completely accidental and is not a comment on what I think of your comments! Know that I read every comment as it is posted, and I am so grateful for your support during this last week.
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I made it to the meeting Friday.
I’m home.
I’m crashed.
It was worth it. More details soon.
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This morning, the CFIDS Association hosted a Senate briefing on Chronic Fatigue Syndrome with Senator Tom Harkin (D-IA). The presenters included Scott Simon from NPR, who spoke about the personal impact of CFS upon his friend Laura Hillenbrand. Ms. Hillenbrand, who lives near Capitol Hill, was too ill to attend the briefing.
So was I.
I am trapped here, in my hotel room, just two miles from the Capitol. This afternoon, the Board of Directors of the CFIDS Association and other advocates will meet with members of Congress and their staffs to discuss the desperate need for more federal funding of CFS research. This is the main reason I came to DC this week - to plead for research funding - but I can’t do it.
Since giving my testimony on Tuesday morning, I have not left the hotel room. In fact, I’ve barely left the bed. I’m maximizing my pain medication and sleeping as much as I can - to no avail. I had hoped (foolishly) that resting on Wednesday would allow me to participate in the events today and a meeting tomorrow. Nope. My only chance of attending tomorrow’s Board meeting is to stay confined today.
So I’m trapped in my hotel, and in my body. My best intentions and optimistic plans have been trashed, once again, by CFS. Once again, I’ve lost the opportunity to make a difference. Congress needs to see people like me, needs to hear our stories in person. It’s our best hope of achieving the goal of a robust CFS research program. But CFS is holding me hostage, and I feel like I have failed somehow.
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Today I had the opportunity to address the Chronic Fatigue Syndrome Advisory Committee, an advisory committee chartered by the Department of Health and Human Services. I delivered the following comments:
I sit before you in a wheelchair today because of Chronic Fatigue Syndrome. I am not here to tell you about what this illness has stolen from me, or about the quality of medical care I have received. In fact, if Chronic Fatigue Syndrome were simply a medical problem, I would not waste your time today. But CFS is costing our economy billions of dollars and is a significant public health crisis.
I am here to urge this committee to advise Secretary Michael Leavitt of the true scope of CFS and the burden of this illness. I am here to urge Secretary Leavitt to immediately direct his department to mount a meaningful response to CFS. The current level of investment in CFS research is not just inadequate; it is an embarrassment.
CFS costs an estimated $20,000 per patient per year in lost productivity and wages, according to a study published in 2004. The CDC’s latest prevalence data estimates a patient population of 4 million, which means the impact of CFS on the US economy is as high as $80 billion per year in lost productivity. This number does not include health care or disability costs, so we must assume the true cost of CFS is even higher.
The annual loss of $80 billion dollars in productivity is a significant public problem. With all due respect to the agency representatives here today, your agencies clearly do not allocate resources commensurate to the devastating impact of CFS upon our economy and nation.
Consider that lost productivity due to diabetes cost $58 billion in 2007. Last year, the National Institutes of Health spent just over $1 billion on diabetes research. In other words, NIH invested 1.7 cents in research for every productivity dollar lost. If NIH allocated research funds to CFS as it has to diabetes, then a 1.7 cent investment per dollar lost would translate into $1.3 billion in annual research. Apparently, NIH believes that CFS does not merit such investment. Last year, the NIH spent only $4 million on CFS research, an investment of less than 1/100th of a penny for every dollar lost.
Allow me to illustrate this gross disparity another way. There are 20.8 million Americans with diabetes. By spending $1 billion on diabetes research, NIH invested $48 per patient in 2007. In contrast, NIH’s CFS research program represented an investment of $1 per patient. It is well established that CFS patients are as disabled as patients with end-stage renal disease, multiple sclerosis and AIDS. There is no treatment for CFS, and doctors do not appropriately diagnose us. In contrast, diabetes can be effectively diagnosed and managed, and doctors are quite familiar with how to educate their patients to maximize treatment efficacy. But NIH spent 48 times more money per patient on diabetes research than it spent on CFS in 2007.
The CDC fares no better than NIH in this regard. While the CDC spent slightly more than NIH on its CFS research program last year, I must bring to your attention that the group published only two papers on CFS in 2007 and has only one manuscript in the pipeline at this time. This is further evidence of the erosion of CDC’s research program, about which this committee has long been concerned.
Ladies and gentlemen, this situation is not acceptable.
No reasonable person can be satisfied with claims that there is no more money available for CFS research. Money can be found for high priority problems. Our government is capable of addressing threats to our economy by bailing out endangered banks or flooding the market with economic stimulus checks. Yet here is a clearly documented cost to our economy of $80 billion in lost productivity each and every year, and the best NIH can do is invest a miniscule fraction of one penny for every dollar lost? This is a foolish policy. Our economy needs 4 million CFS patients to return to their jobs, earn their salaries, support their families and pay their taxes. If Secretary Leavitt has been unmoved by the suffering of patients and their families, then perhaps he can be convinced by the numbers.
Do not tell me that we cannot afford more CFS research. The truth is that we cannot afford NOT to make meaningful investments in CFS research.
This committee’s charter obligates you to advise the Secretary of the burdens of CFS, not just on individuals, but on our economy as well. You are obligated to tell the Secretary that the two agencies responsible for researching CFS and finding treatments for it saw fit to spend a tiny fraction of one penny for every dollar of lost productivity last year. You must convince the Secretary that research spending should be made proportional to the size of the problem.
I urge this committee to take whatever steps are necessary to secure meaningful action by the Secretary. I have been ill for 4,962 days. I am waiting for this committee and the Secretary to act. And I do not wait alone. At least four million Americans and their families wait with me.
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Eliza and I set out on this beautiful day for some consolation yarn shopping. See, I missed Maryland Sheep & Wool again, despite my close proximity to the event. Our plan was to go to Knit Happens and then enjoy some knitting in public at a cafe across the street. So we got ready, loaded up - I even had my list of needles and a spending allowance. We drive through lovely Old Towne, Eliza drops me off so she can go find parking, I walk up to the door and see:
CLOSED FOR MARYLAND SHEEP & WOOL.
Nerts.
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This has been a weird month. It went really fast, and I felt like I was knitting and sewing a lot. But I’m not sure exactly what I got done. I feel like I’m constantly going uphill. Anyhoo, let’s review the goals for April:
1. Fix and finish Jeanie.
2. Finish at least two gifts (of which I can say no more because nosy people read this blog).
3. Cast on a sweater for me.
4. Finish the Botswana baby blanket.
5. Knit something really boring and easy, like a washcloth.
I did indeed fix and finish Jeanie. I absolutely adore it. I wore it out on an 80 degree day to have coffee with Celeste. I wear it around the house when a t-shirt is too cold but a sweater is too warm. The rest of the time it is draped over a chair in the living room so I can see it. Pictures to follow once I can arrange a combination of Mr. Tumblyday, his camera and sunshine.
I did finish two gifts. You can only see one for now.
I cast on Samus for myself. I’ve decided to knit the body in black and the cable in gray. Not sure which color to use for the i-cord trim, but I’ve got time. Right now, I’m within range of the armholes, so I’m making nice progress. No photo yet, so bad blogger no cookie!
I did not finish the Botswana baby blanket, but I did find a solution. Turtleknits has offered to finish the project. She loves garter stitch, she says, because she can read and knit at the same time. Wish I could! So anyway, the blanket has been sent off to her and is off my list!
Finally, I wanted to knit something completely mindless. I didn’t get to the washcloth, but I did make a cozy. I guess it was pretty mindless.
The other project I worked on was for Celeste. She gave me some Malabrigo (omg yum) and asked me to knit some soakers for the Wiggles. I’ve been working on those in between the other projects.
So on to May. I’m having a lot of trouble figuring out what my knitting goals should be. I can’t put my finger on it, but I just feel like I’m forgetting something very important. I have a lot of gift knitting still to do. But I also feel compelled to knit something exclusively for myself that is different - maybe a shawl? The list may get revised as the month goes on. I hope this uneasy feeling goes away.
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The final number for the Ravelraiser is . . . . .
drum roll please
$70,923.37
Just freakin’ awesome.
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