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?
more…
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:
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:
- 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.
I’m so behind in replying to comments on my previous diaries, but while I’m having some almost pain-free time here. I decided to make this diary a priority.
Thanks to all of you who will contact your senators and thanks to all who have cared so much about me and for me this week. It has meant more than you can know.
Thank you for posting this. This is a very important issue and I will be contacting my senators. I hope you continue to have more pain-free time.
(I tried to put this in the normal comments, but it won’t let me…)
I’m more than happy to email Boxer(one of my Senators) as I get emails from her weekly.
It’s always hard for me to comment on any diary concerning medical problems due to my 30 year history of being misdiagnosed and still do not have a doctor.(neuro-muscular disease). Feel as if I mention my problems it takes away from the person who put up their own diary and just usually leaves me conflicted about how much I should say about myself.
So in my roundabout way I am hoping this weekend will bring you some peace and relief and will be thinking of you.
I have seen some of my patients with lupus..when the kidneys are affected…I am a hemodialysis nurse. I know the things you have written about above are accurate. It is a very painful disease for some ppl too. Since it affects the joints they place it in the catagory with arthritis. If that helps you to understand somewhat of what they are saying.
Thanks so much for promoting this to the front page. Great – now I’m crying. You can stand a soggy hug, can’t you? I sure hope so.
both Armando and I are very concerned about you. I don’t know how the Canadian system works but I wish you were in the care of a specialist rather than relying of emergency care (which didn’t sound too satisfactory). Promoting your diary is the least I can do.
I am finally being referred to a urologist and my family doctor has been great throughout this week. Socialized medicine has a lot of benefits, but having to wait 5 hours before being seen in emerg isn’t one of them. The overcrowding is also a huge problem, but the blame for that here falls squarely on our provincial Conservative party in Alberta. We’re the richest province in the country and they made severe cutbacks to many programs in the 90s in the name of clearing the debt. Well, it’s gone now and we’re still suffering. This is a huge topic on its own and – you know me – I could rant on about it for hours, but I’ll leave it at that for now.
You’ve been there for me, Boo. Armando, in his own pig-headed way, has been too. I know both of you care, as do many others who have e-mailed me and left comments in my diaries. I know I’m not alone and that means the world to me. Just, stop making me cry – okay?? It’s not good for my tough gal image.:)
I live in Ontario with my Canadian husband, awaiting the processing of my permanent resident status. But I lived most of my life in California, and have encountered even longer waits in the ER there, even at Stanford University Hospital. Both countries need improvement, but I hope that Canada improves the public system, rather than creating an official 2-tiered system.
Welcome to Canada! I hope the recent Canadian Supreme Court decision re: Quebec’s medicare doesn’t muddy the waters too much. I haven’t had enough time to check out all of the ramifications yet, but if (my) Premier Klein is applauding it, it can’t be a good thing.
Consider it done.
I am so glad to hear that you finally have a few pain-free moments. It always breaks my heart to hear of anyone in any kind of pain.
Hugs to you, Catnip.
Welcome to the club. I also have lupus, but a particularly esoteric variety. It’s not fun, but I do want to give you some hope. I have been able to contain my symptoms with next to no prescription drugs by doing everything we are all supposed to do anyway (RELAX, exercise, eat right, stay out of the sun, stopped smoking). You really have to take your lifestyle changes seriously.
I am a unique case, but the likelihood that you will end up with the extreme symptoms is containable, assuming your liver, etc is OK after this outbreak.
I also can’t stress this enough: Medical Marijuana works with Lupus! Hard to find evidence of this in US publications (including web), but I have studied the chemical pathway and available publications, and it seems legit. Especially when compared to the prescription options. It also tends to help those of us Type A personalities to develop more Type B traits. The supreme court just really screwed everyone with Lupus (not to mention AIDS, waisting diseases, etc.), but you and I know that it is available if you are willing to take the risk.
Getting politically involved is a great idea, just don’t get frustrated or worked up over it (easier said than done).
Be well.
I was trying to figure out your latest email to forward this to you. I’m glad you found it on your own.
Also, while most people assume that lupus only affects women, you can tell people otherwise.
I’m a white female and have no history of Lupus in my family. It was only discovered accidentally via blood tests when I saw my dr about a lump in my neck a few years ago – which turned out to be a swollen lymph node. I also had had fibromyalgia diagnosed about a year before that, so I truly felt like I was falling apart physically. I’m not able to work and that has been difficult, but I’m definitely not as sick as many others out there who have more complications than I do, so I count my blessings.
The symptoms for both are so common and diagnoses can take a long time in some cases. I was fortunate to at least find out, somewhat quickly, what I was dealing with, but, in both cases, it was quite by accident.
I’m very discouraged by the state of healthcare in the US. We don’t have nirvana in Canada, but I sure feel for Americans who have to struggle financially as well as physically and emotionally. Society has to do better than that.
Only I was going to be a jackass and just call Anachro out in a comment.
BTW- he’s pretty much always right about everything. Not that I listen to Anachro often, but when I do it pays off.
Thanks, anarchronarchist (a very interesting nickname!). You’re right. I do have to take lifestyle changes seriously. I’m still frustrated about having to stay out of the sun because I love gardening, but the sickness it causes is enough to keep me in the shade. Eating right is a constant challenge because of my limited income, but I know I could manage that better. And smoking – well that’s my last vice and it has to go.
Regarding medical marijuana, I’m grateful that Canada has much more liberal laws for those who have a real need. I’m a recovering addict – clean 18 yrs now, so that isn’t an option for me. I usually just take extra-strength acetaminephon or, lately, Toradol, for pain and this week has been an exercise in severe pain tolerance. They wanted to give me some heavy narcotics in the hospital, but that is an absolute, final resort. My sobriety and sanity can stand pain and I’m very stubborn. I’m not on any other meds for Lupus and I didn’t realize, until I read the text of the bill, that there have been no new Lupus drugs in 40 years. Wow.
I wish you well also as you deal with Lupus and thank you for reminding me about what’s important.
Hi Catnip!
My sister-in-law’s sister was diagnosed with lupus about 2 years ago. She changed her diet, began exercising and doing yoga regularly, sees a homeopath, and changed from her stressful job. They were big changes for her, but today she says she feels better than she has most of her adult life.
I just want to say I am with you guys on all that you have said. I will contace some but my senators here in Tn do not care about anyone but themselves and their own kind. The Gov of this state is as good as it gets here. He has made it easy for patients like mine to get what they need so far…
I am with youall tho…we just never know when something will happen to us either…big hugs nad prayers…..
Thanks Brenda. 🙂
Thanks for sharing that. I know there’s hope. This is the toughest time I’ve faced with Lupus so far so it’s been scary. Everyone here has been so supportive. That’s helped tremendously.
I’m obviously out of the loop so didn’t know the challenges you’ve had lately. I now have a better idea why you felt the need to leave dkos and I respect your decision. As a cancer survivor and glaucoma sufferer, I do understand the necessity of reducing stress and taking good care of myself…so please do take good care of yourself and I wish you the best with your treatment. I’m also glad you didn’t disappear completely and are here at BooMan Tribune. I hope to see more of you and hope you continue to share your journey with us.
So many have shared their personal struggles with me this past week. It helps me know that I too will survive this. ((hugs))
Thanks for letting us know about this bill. I’m very sorry to learn that you have lupus – it sucks. I was diagnosed with lupus in 1996, after several years of extreme fatigue, joint and other pains, cheek rash, mouth sores, and photosensitivity. Never any kidney or other organ involvement. I was also diagnosed with fibromyalgia. In 2002 I was finally diagnosed with my real problem, Dercum’s disease, and the VA rheumatologists said I don’t have lupus. Dercum’s is also called adiposis dolorosa, and many symptoms overlap with fibro, but the main symptom is deposits of abnormal fat that are painful. I’m doing OK with Lortab round the clock for pain at this time. A very new pain treatment, Prialt, a derivative of cone snail venom delivered through an implanted pump in the spine, is apparently providing excellent pain relief, and may be something for you to look into if needed.
One resource that you might find helpful is But You Don’t Look Sick which is primarily about lupus, but a lot of the principles also apply to other “invisible” disabilities. In particular, the essay The Spoon Theory is an excellent way for others to get some idea of what it is like to have lupus.
Please accept a gentle hug from me. Take care, keep in touch when you can, and use your spoons wisely.
Thank you for these resources. I will definitely check them out. A gentle hug for you as well. There are so many of us…
Thanks so much for that link to the spoon theory! I sent it to my daughter. I hope maybe she’ll get it now.