Thursday, November 13, 2008

Wick Davis, who rights the Lupus Foundations blog asked that I post this on my blog & I am happy to participate...

50 Years Without a New Lupus Drug! What Does it Mean to You?
Share your stories with Congress and Encourage Researchers to Keep Up Their Effort

Thursday, November 20, 2008 will mark an unfortunate anniversary. On that date, it will be 50 years since the U.S. Food and Drug Administration (FDA) last approved a drug specifically to treat lupus.

A half century is a long time to be waiting for safer and more effective treatments for a disease that affects an estimated 1.5 million Americans and at least five million people worldwide.

We need to let Members of Congress know that they must provide more funds to conduct the basic research that pharmaceutical and biotechnology companies need to develop new treatments for lupus. At the same time, we want to express our collective gratitude to the hundreds of researchers and industry executives who have been working tirelessly for many years to bring scientific discoveries from the bench to the bedside.

So what does 50 years without a new lupus drug mean to you?

No one is more qualified to speak out about the need for better treatments than individuals with lupus who have no option but to keep using the old drugs that were approved for lupus when Dwight Eisenhower was still president and can have side effects worse than the primary disease.

How can you help? Share your story!

Please help by sending a two part email message to as soon as possible but before November 20.

In the first part of the email, write a short message (about 150 words) that explains to Members of Congress what 50 years without a new lupus drug means to you. In the second part of the email, write a short note of appreciation that explains to researchers and industry executives how grateful you are for their efforts to develop new safe and effective treatments for lupus.

Please include your first and last name and your city and state in your email. If possible (but certainly not required), please also attach to your email a clear photo of yourself so we can personalize your message.

We will use your email message in several ways to help advance the science of lupus!

Deliver your message to Congress.
During the LFA’s Annual Advocacy Day, lupus advocates will deliver your story, and the stories of others, to policy makers in Washington, DC. Be sure to include your name and your city and state in your message so we can deliver your story to your Representative.

Feature selected stories on the LFA website. While we are not able to promise that we can post every message and photo we receive, we will review each one and post as many as possible to our website and in our blog so the public also can learn about the impact of 50 years with no new drug has on people with lupus and their families.

Share your "Thank You" notes with Researchers and Industry Executives.
Today there are hundreds of dedicated researchers and executives from pioneering biotechnology and pharmaceutical companies working hard to advance the science of lupus and to conduct clinical studies of nearly 30 potential new treatments for lupus. We want these individuals to know how much you appreciate their continued focus on lupus.

We Need Your Help Now! Act Today!

Send your message and photo today (or by November 20) to Then, on Thursday, November 20, visit our website to read the messages and learn how the LFA is taking steps to address this urgent problem.

Ask Others To Get Involved!

Please share this request with others who also have been waiting as long as five decades for a new lupus treatment! Together, we can raise awareness of this issue and urge our elected leaders to provide increased funds for research to find ways to develop safer and more effective targeted therapies for lupus.

Monday, November 10, 2008

Jumping for joy (in spirit)

I went to my rhuemy today cause my lymph nodes have been swollen in my neck, upper chest and arm pits so I headed into the doctor in hopes of some solution. Well after dicussing this last flare she stated that this was not a flare, but a viral infection that is going through children. It usually last 24-48 hours but since I have a comprimised immune system, plus medications I have been suffering for weeks. I was SO excited to get this news. Then she did her exam of my lymph nodes, check my ears & looked in my throat- only to see a sign of strep throat- WHAT? I have had no pain in my throat- or at least I don't think my throat hurts- with all the other pain who knows. So my spirits are up, sure there is no medication for a virus, but an answer it what is important. I'd be jumping around singing God's glory except I only have the energy to sing it while sitting down. God is so good. He has gotten me through another battle of my life long war.

Wednesday, November 5, 2008

Back to work

I took the last two days of work off in hopes of sleeping off whatever I am fighting. I managed to keep my meals down all day yesterday and fought off the urge for a nap. That forced me to fall asleep early last night, but it was well worth it.

Today I headed back to work & my body is screaming at me to lay down. I ate breakfast ok, but lunch made a revisit. I am really frustrated with this. So it's back to soda crackers.

I got the nerve to ask my SS class for prayer, well at least just emailed the ladies. I didn't realize how encouraging they would be. The responses have come at the perfect time. It is so good to know I have such an amazing group of friends.

Tonight is Wednesday, which means AWANA. My partner in this fabulous ministry has told me I will be sitting down all night doing paperwork, not my favorite thing, but I know I need it, so I am going to accept it and move on. I'm just nervous cause the bathrooms are so far away and if I have to throw up what do I do? Boy oh boy chronic illness is so much fun! I just can't believe all I go through.

I am curious about Lymph Node issues though and of course I can't find much. If you happen to know of any sites that would be good for information please comment. I can feel the lymph nodes in my neck, arm pit, under my breast and by my collar bone and they are swollen and painful. I don't see my doctor for another month and I hate to call her and see if it's a big deal.... I know I should call, but I was hoping to find something online to see if it is something I should worry about.

I hope you are all having a better day than I am :-).

Tuesday, November 4, 2008


I have worked SO hard the last 9 years not to be defeated by Lupus, but this current flare has taken EVERYTHING out of me. I am trying so hard to be positive but it's taking more energy out of me than I care to spend. How do you stay positive in such turmoil.

I haven't been able to eat anything substanial in 5 days, that is really what is wearing me down. I wish I could loose weight when these flares attack my digestive system, but no. If the flare had some bennifits I'd say "bring it on" but it doesn't :-). Anyways, just wanted to keep you updated.