Author: catnip

Action Alert: Contact Senators to Urge Passage of (Lupus) Bill S. 756

promoted by BooMan.

I really shouldn’t be blogging because this week has been a personal nightmare for me healthwise, but my doctor’s office suggested I do further research on the internets today regarding kidney related Lupus tests that I need to have very soon and I came across a bill that needs support. Everything’s political, isn’t it?

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Bill S.756 (text – please read it), The Lupus REACH Amendments of 2005 (note the catchy acronym) was introduced on April 11, 2005 by Senator Bennett (R-UT) and has been co-sponsored by Senators Barbara Boxer (D-CA), Orin Hatch (R-UT), Mary Landrieu (D-LA), Patty Murray (D-WA), and Richard Shelby (R-AL).

REACH stands for Research, Education, Awareness, Communication, and Healthcare. The Lupus Foundation of America, Inc. is calling on interested citizens to contact their senators to sign on to this bill and has provided relevant links on their site.

The Office of Legislative Policy and Analysis provides a more in-depth look at Lupus and the reasons for these amendments. (Note: I know absolutely nothing about the politics of OLPA, but that’s just not a huge concern to me here, because this is an important health issue and their summary is non-partisan.)

From the OLPA site:

Background
Lupus is one of many disorders of the immune system known as autoimmune diseases. In autoimmune diseases, the immune system attacks parts of the body it is designed to protect, leading to inflammation of and damage to various body tissues. Lupus can affect the joints, skin, kidneys, heart, lungs, blood vessels, and brain. Lupus can affect people of all races, but African American women are three times more likely to have lupus than white women and are more likely to die from it. Lupus is also more common in women of Hispanic, Asian, and Native American descent. At present, there is no cure for lupus; however, it can be effectively treated with drugs, and most people with the disease lead active, healthy lives.

The site then provides a detailed look at Lupus research to this point under the direction of the The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) along with the key provisions of the bill:

S. 756 would amend Section 441A of the Public Health Service Act to:

  • Require the Director of NIAMS to act through the Secretary of Health and Human Services to increase lupus research at the Institute
  • Delete the requirement that NIAMS must conduct and support research to determine the reasons underlying the elevated prevalence of lupus in women, including African American women
  • Clarify that NIAMS would have to conduct and support basic research to discover the pathogenesis and pathophysiology of the disease
  • Expand the number of racial categories that NIAMS would have to study to determine the reasons for the higher prevalence of lupus in these populations
  • Delete the requirement that NIAMS conduct information and education programs for health care professionals and the public
  • Add a requirement that NIAMS conduct and support research to validate lupus biomarkers and develop improved diagnostic tests
  • Delete the authorization of appropriations section

If you have any questions about these provisions, please refer to the complete summary on OLPA’s site that explains the reasons for these amendments.

I don’t necessarily understand all of this at this moment because my head is so muddled from my illness right now, but – I trust Barbara Boxer and if she is co-sponsoring this bill, that’s good enough for me.

Although I’m Canadian and this is a US Senate Bill, the ramifications of this further research will definitely affect the quality of my life with Lupus in the future, so I urge you, even if I’m the only person you’ve ever heard of who has this disease, please take a moment out of your day and contact your senators. All of us with Lupus need your help.

Thank you.

Update [2005-6-10 15:14:51 by catnip]: In a very quick response to an e-mail I sent earlier today to the Lupus Foundation of America, I have some new information to share:

* first of all, I didn’t realize that the Senate Committee on Health, Education,
Labor and Pensions acronym is HELP. I like that.
* secondly, the bill now has 12 co-sponsors. Check to see if your senators are on that list.
* both senators from these states have already signed on: UT, MD and NJ.
* there is a House bill in the works and action will be called for when that hits the floor too. Contact your congresscritters.

Moving Forward – What Really Matters

First of all, thanks for the warm welcome back. I appreciate all of your comments in my previous diary. Just a quick update on my health: I had to visit my doctor today because I’m still experiencing severe pain in my left kidney. For those unaware of my situation: I have lupus that affects my kidneys and it’s been very manageable to this point, but, due to my lack of attention to this latest bout of pain that’s lasted 2+ weeks now, I can only hope I haven’t caused permanent damage to my kidney. Regardless of having a clear CT scan Tuesday morning after a nite in the hospital dealing with a stone or stones, apparently, the scan isn’t able to pick up all forms of calcification, so I may well have more stones and, judging from the pain level, I’m pretty sure that I do. However, I’ll sit for these few minutes and type this because I think it may help to heal the rift that Booman referred to in one of his posts.

on with the show…
So, how do you heal? Well, I’m learning a hard lesson about that topic, as you can see. And, here are some pointers from my very recent, personal experience:

  1. Define your priorities. What are the most important things in your life? In the context of political participation, including blog life, think about what stirs your passions. What spurred on your interest in all things political? What principles do you stand for? What are you willing to give up? What shouldn’t you sacrifice?
  2. Focus. In order to heal, you need to know what has to be attended to. Which fights are worth fighting? Which discussions are really relevant to your goals? How can you deal with as much as possible without losing your way?
  3. Energy. You only have so much. Where is it best directed? What is the best use of your time? How can you create even more energy for yourself and those around you?
  4. Rest. As your mom said, you’re no good to anyone else if you don’t take care of yourself. If your mom didn’t say that to you, I’m a mom (and a grandma) and I’m saying it to you now. The world will not collapse and the Republicans won’t suddenly fall from the face of the earth (unfortunately) if you take a few days off.
  5. Reduce, Reuse, Recycle. Okay. I just got off the phone with my daughter who has a recycling business, so I thought I’d throw that in. It kind of fits anyway.

My point is this: one must decide when it’s time to move on, move sideways, move forward or just move, period. That doesn’t imply getting over it. It simply means that reevaluation is invaluable and it’s something that should be done often. A stagnant life is not worth living and, in my case, it can be damn physically painful sometimes!

This will be a bit of a post and run – well, more of a post and lie down, since I really, really cannot sit much longer. So, have at it. Be selfish. Focus on you and why you’re here. Leave the rest of the crazy world out there for a minute and ask yourself what really matters and go on from there.

See you again soon.
 

I Need An Explanation [Updated w/ health info, 8/6]

Update [2005-6-8 11:59:4 by catnip]: I added a comment near the end of the diary about my health status. Hope to see you all again soon.

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I joined this site shortly after it began and, while happily ignoring my health problems staying busy by hanging out and posting over at Daily Kos (resulting in an emergency trip to the hospital last nite to finally get that serious back pain checked out and finding out it was a kidney stone – no wonder it hurt so bloody much), I didn’t take the time to check out Booman Tribune that much.

So, here I am – the evening after the horrendous nite before and I’m posting on a blog again? Why? Because enough is enough.
After I read Booman’s Defense of Markos diary over the now infamous “pie fight” ad, I e-mailed him privately and told him I couldn’t support this site either if that’s where he stood. Simply being too busy to take enough time to put some thought and consideration into front page posts didn’t wash with me. The situation at dKos is endemic. Boo e-mailed me back and let me know that he had recosidered his support because he hadn’t had all of the facts at hand, but I’m still not sure he’s really pulled his defense of kos. I haven’t read enough here in the past 2 days (because I’ve been too busy writhing in pain!) to know exactly where Boo stands. So, please fill me in.

Now – back to why I’m posting tonite. I don’t want to bring the pie fight ad war over here, but after checking in on dKos tonite and seeing the latest version of that ad – one that depicts “Maryanne” holding “Ginger” down while her carefully placed red piece of material suggests a penis she’s prepared to thrust into “Ginger”, I cannot, for the life of me, understand how anyone who believes in women’s rights and has been forgiving of kos can cosign that kind of depiction on a progressive, liberal site.

Is that what will bring in women voters? Is that just something else for the macho crowd and women in denial to snicker about to the detriment of women’s “delicate sensivities”? Am I now one of those sanctimonious women’s studies people, having never taken a women’s studies course in my life?

Oh, I have a lot to say about why I am a feminist and I’m sure I will write about that, but not tonite. All I ask is that those of you who continue to defend kos explain to me how this new version of the ad is even remotely acceptable, because I sure don’t understand it. And, don’t you dare attack me as being humourless, sexless, out of touch with my sexuality or prudish. You know absolutely nothing about me. So, tell me – rationally, what that depiction does to promote the values of liberals and the Democratic Party.

P.S.
Yes, I left Daily Kos. No, it wasn’t over the ad. Yes, Markos’s comments were the final straw. No, I wouldn’t post this at dKos because it’s glaringly obvious that a large segment of “progressives” over there simply don’t understand what the battle for women’s rights has entailed. I’m sorry to say that I truly see that issue as a lost cause in the current dKos climate. I see more hope here. I need your help. Please enlighten me.

Congressman Bernie Sanders Slams the Media

When I turned on my television this afternoon, CNN was presenting wall to wall coverage of the steroids in baseball hearings. Yawn. I’m not a baseball fan and overpaid jocks do nothing for me, but I love watching political theatre, so I confess to watching the hearings for a while. I don’t particularly want to discuss the steroids in baseball issue here. What I do want to focus on is one man’s well-covered chastisement of the MSM.

My favourite highlight was brought to my TV screen courtesy of Congressman Bernie Sanders (I-VT).

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I’m Canadian and there are many US representatives I’m not familiar with. Bernie Sanders is one that I’ve never paid attention to. Well, he caught my attention today.

When he began to speak at the hearings, he first made a point to lecture the numerous media people there. A man after my own heart.

You can watch or listen to Rep. Sanders in action here, on C-SPAN. Just click on the “House Hearing on Steroid Use in Major League Baseball – Part 3 (03/17/2005)” and fast forward to approximately 2:47:46 on the recording.

Mr Chairman,

This morning, I was on a TV show, as I’m sure many members of this committee were, and I was asked by the interviewer whether I thought this committee was grandstanding, whether in fact, we were using the fame of these outstanding athletes to get our names in the paper and so forth and I said I didn’t think so because I thought this was a hugely important issue impacting millions of young people. And, that’s what I believe. But, I do want to say that I am overwhelmed by the kind of media attention that this has gotten.

I have counted dozens of TV cameras and I think some of the American people wonder, is this all we do, because this is what they see on television. So, I want to say to our media friends, that when some of us talk about the collapse of our health care system and millions of people not having any health insurance, come and join us. And we talk about the United States having the highest rate of childhood poverty in the industrialized world at a time when the rich are growing richer, come on down. Now, maybe we may have to bring great baseball players to help us talk about childhood poverty, I don’t know. I would hope not. I would hope we could have some of the great experts and I would hope you would come. But, to the American people, some of us are dealing with other issues as well.

You can visit Rep. Bernie Sanders web site and send him thanks as I have done. As I said, this congressman is new to me, but I see from the issues he writes about on his web site that he champions some causes that are vitally important to this liberal. I’ll be watching his moves from now on.

Thank you, Congressman Sanders, for using that well-publicized platform to remind the media about the truly important matters of the day. And, if you’re now accused of grandstanding for what you’ve done, so be it. We could use more such grandstanding in the future.

(cross-posted to Daily Kos…)