Where Does Time GO?

Where oh Where has time gone? So much has happened in my life since my last blog. I feel shame for taking off for so long. chuckle…..

Well it’s time get right back into it. I’ve experienced a few flare ups since my last post. Same ole Same ole, but it scares me to death when my feet swell so bad. It hurts to bend them in any direction when their that tight feeling.
I heard from an old child hood friend the other day and she has been diagnosed with Lupus. Which I already knew, because we had been talking about it for the last six months and I learned some info on what steps she was on and OMG-I got sorta upset and I told her that if I had known all this, I would insisted she get to Shands Hospital in Jacksonville, FL and get in with their Rhuematology Clinic ASAP. See when I got diagnosed, my doctor then couldn’t refer me to any doctors here locally and made me an appointment two hours away and asked if I had a problem with that? I said No, Not at all. Cause if he didn’t trust any doctors locally and refered me two hours away, then I was okay with that. There was not anyone here in town that he trusted enough. See at that point, I had already gone into the gangrene stages with my toes and tips of my pointer fingers. UGH-Talking about pain.
Anyhow, she is just about to get all her records from all the doctors and then she will take them down to Shands to see if they can figure out a course of action to take with her.
When I went to UVA Medical Center in Charlottesville, Va., I had five different teams working on their specialties, where as she has had to go to each  doctors to do all the test needed. Lupus can affect ALL of your organs, that is what  I mean when I speak of the different teams, i…Lungs, heart, brain, bone, etc,) They did determine that she has Lupus, with a biopsy, so now what?  That is how they finally determined for me it was Lupus.

Well when they finally told me that is was Lupus, then I had to choose which high-powered medication was I going to choose. I chose Cytoxan, at that time, I did massive research on each drug he told me to look at. Cytoxan was a very aggressive drug. They were all scary but I had a gut feeling about it. So that was my sign from above. So anyhow, I had eight of these. It’s just like having chemo. Yuck!
I explained all this to her because they need to hurry up and do something to stop the progression of her disease. I think she understood what point I was trying to make. I told her I wished I had known all of that six months ago, cause I would have been on the phone a heck of a lot more, checking in on her to see if she was making progress.

Can you believe the Capital of Florida, Tallahassee, has only one (1) Rhuematologist in the whole dang town? And he is elderly I am told. Like almost eighty.
I couldn’t believe it.

Until next time,

Live-Laugh-Love

 

Life is too short.

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Good News for Lupus Research

Lupus Foundation of America Applauds Congress for Funding Vital Lupus Research and Education Initiatives
December 17, 2011

(Washington, DC) The Lupus Foundation of America (LFA) applauds Congress for including vital lupus funding in the Fiscal Year 2012 Omnibus Appropriations Bill, which passed today, Saturday, December 17. The Military Construction and Veterans Affairs, and Related Agencies Appropriations Act, 2012, includes $50 million for the Peer Reviewed Medical Research Program (PRMRP) at the Department of Defense; $1 million to continue the national health education program on lupus for health care providers through the Health and Human Services Office of Minority Health; and more than $4 million for the National Lupus Patient Registry conducted through the Centers for Disease Control and Prevention.

Lupus continues to be one of the disease research areas that qualify for funding under the PRMRP Program, which consists of $50 million that has been appropriated for PRMRP in 2012. This will enable funding of additional critically-needed studies on lupus. Through its advocacy initiatives that began in 2003, the LFA pioneered efforts to have lupus included as a disease area eligible for research funding through the PRMRP. The LFA has continued to demonstrate to Congress the relevance of lupus research to military personnel and their dependents. To date, 11.8 million has been awarded to lupus research by PRMRP as a result of these efforts.

The legislation includes $4 million included for the National Lupus Patient Registry, bringing the total funding to $18.5 million for the study. In 2003, the LFA worked with Congress to establish the National Lupus Patient Registry, designed to more accurately estimate the prevalence and incidence of lupus in the United States. The National Lupus Patient Registry will help us better understand and measure the burden of illness, the social and economic impact of the disease, and to stimulate additional private investment by industry in the development of new, safe, tolerable and effective therapies – and eventually a cure – for lupus.

In 2006, the LFA secured Congressional support for the Lupus Research, Education, Awareness, Communications and Healthcare (REACH) Act. Among its provisions, the legislation called for funding programs to improve health professional education. The legislation provides $1 million to for the national health provider education program on lupus, bringing the program total to $4.6 million since 2009. The education program addresses a key goal for the LFA’s advocacy efforts, to improve early diagnosis and treatment of lupus.

Lesson Learned

Well, today I learned another valuable lesson. When typing your blog, use Word. I had just finished a pretty good and long blog and poof, a Firefox glitch and poof, gone. So I will update the new page another day.
Have a Good Weekend Everyone!

“You Don’t Look Sick”

This blog will be about Lupus and How I deal with it on a day to day basis. I am also 45 years old and going back to school. I will be sharing happenings in my life as well as Medical information that I will occasionally share as appropriate. My passion is also Internet Marketing, which is what I am studying to get my Bachelor of Science degree. I may need to sound off a bit about dealing with school and Lupus and the trial and tribulations that come with it.