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Depressed and optimistic, is that possible?

Depressed and optimistic, is that possible?

 

I have dropped off the radar again.  Not intentionally;  the days just seem to meld into one long day, and I’ve been so sick, time is getting away from me.  I haven’t talked to my best friend in at least a month.  Again, not intentionally.  I’ve written so many ‘I’m sorry’ emails in the past, I just don’t know what to say anymore.  I feel extrememly guilty about isolating, but at the same time, I can’t seem to stop.  I had a horrible realization a few days ago, and it was-I make it through each day and try and get well enough to make it to my next doctor visit.  I actually missed my last one.  I couldn’t get out of bed so C went and picked up my prescriptions.  This is no way to live, I feel powerless to change it.

Between non-stop flaring and being a momma, I have no time for anything anymore.  Facebook, my Christian groups, Flickr, television, nada.  For those who aren’t computer-heads it’s not much of a big deal, but the computer has become part of my life since becoming ill.  It’s my ticket out into civilization, lol.

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Have lupus? The Lupus Alliance of America needs your help

Have lupus? The Lupus Alliance of America needs your help

In the beginning of my illness, I was told that I had lupus. I immediately went home, cried, then read everything I could get my hands on. I was online reading medical journal material, lupus blogs, lab reference sites, everything and anything (except for sites with no reputation, and the ‘cure all’ sites, ugh).

I joined a support group for people with lupus and friends and family of lupies. We shared stories of pain, grief, frustration, triumphs, symptoms gone mad, remissions, and bonded because of a common link-chronic invisible autoimmune disease: lupus. I have never in my life met so many strong women. Of course when I got sick I felt very alone. I soon found out that there were thousands of women and dozens of men on this site who were going through, or had gone through everything I was experiencing. I learned how to stand up for myself at the docs, how to keep records and manage them, find out where to look for lab explanations and the many acronyms, and most of all I learned that I COULD survive this. I could even conquer it some day. After about a year and a half, I let go of that group. It wasn’t because I didn’t enjoy it anymore, or that the docs told me they didn’t think it was lupus. It was just time. As I was leaving, dozens more were joining. Each one as scared as I was that first day in the room.

I will always advocate for a cure for lupus. Whether I have lupus or not it has a place in my heart forever. It is such a devastating disease, and was one of the most overlooked.

Now lupus is finally getting out there getting talked about and people in the entertainment industry are advocating for research and a cure. Say what you will, but when famous people stand behind a cause, people listen. Lupus voices are being heard. And a new drug! The first one in 50 years!!! Can you believe that? 50 years. It’s just unforgivable that it was ignored for so long, but thank God there is a new medicine.

We should all keep talking and bringing awareness to this disease and other autoimmune diseases; Multiple Sclerosis, Ankylosing Spondylitis, Antiphospholipid Antibody Syndrome, Graves Disease, Chron’s Disease, Dermatomyositis, Meniere Disease, Rheumatoid Arthritis, Insulin dependent Diabetes, Mixed Connective Tissue Disease, Schleroderma, Myasthenia Gravis, Ulcerative Colitis, Cardiomyopathy, Addison’s disease, Vasculitis and many, many more.

I’m gonna stop here and just ask, if you have lupus or are a parent of a child with lupus, will you please take the survey? It’s put out by The Lupus Alliance of America, it takes about 30 minutes and it’s results will help them learn what people with lupus are in need of, and the data will help spread awareness and speak of what effects lupus has on the people with the disease. Remember, awareness is key. It’s not going to be able to be swept under the rug anymore. It needs immediate attention, more funding for research to find a cure. Check this statistic out, it’s from the AARDA site

NIH research funding for AD in 2003 came to $591 million. In comparison, cancer funding came to $6.1 billion; and heart and stroke, to $2.4 billion (source: NIH).(AD: autoimmune disease)

You can go directly to the survey by clicking on the survey logo below.  At the bottom of the page is a link to the Lupus Alliance of America’s website.  Thank you.

Until next time,

2michelle


Survey

In the last ten years Lupus has finally started to get the attention the over 2 million Americans who suffer from it have long dreamed of.  From garnering special focus at the National Office of Women`s Health and the Office of Minority Health, to National Awareness campaigns and more research on lupus, and the development of new medications to treat lupus, those living with the disease are more encouraged than
ever before. But more work is yet to be done.

This is a very important time for lupus research and the Lupus
Alliance of America needs your help. To further the dream of greater public awareness, much needed government support and diligent research into the cause, cure and treatment of lupus, The Lupus Alliance of America, its affiliates and L.I. CW Post have designed a voluntary survey to help gather statistics to assist them in achieving those goals.

JC VanderPutten
Lupus Alliance of America

http://www.lupusalliance.org


The story of ‘Lucy’ by Julian Lennon and James Scott Cook

The story of ‘Lucy’ by Julian Lennon and James Scott Cook

Here’s a little info from Julian Lennon about Lucy.  I really like the song, it’s catchy.  Check out the video, it’s an interesting story, and remember you can download the song from iTunes and portions of the proceeds goes equally to The Lupus Foundation of America (LFA) and the St. Thomas Lupus Trust in London.

This is a short PSA 🙂

And now the video and song!.Enjoy and don’t forget to purchase a download. It’s helps fund research for a cure!

Until next time~

2michelle

Julian Lennon and James Scott Cook Raise Awareness and Funds for Lupus Research

Julian Lennon and James Scott Cook Raise Awareness and Funds for Lupus Research

This just in, to my inbox anyway!! I am so happy, excited, ecstatic, and all the other gleeful descriptive words!!  Not just money for research, but BIG names raising awareness! Weee hooooo!!!  Check it out-

Julian Lennon and James Scott Cook Raise Awareness and Funds for Lupus Research

November 24, 2009

Proceeds from the song, “LUCY,” will be donated to the Lupus Foundation of America and the St. Thomas Lupus Trust

Washington, DC, November 24, 2009 — Julian Lennon, son of the legendary John Lennon, and James Scott Cook announced today that they will donate a portion of the proceeds from their song, “LUCY,” to fund research on the disease lupus. The song was created to honor Cook’s 92-year-old grandmother, Lucy Cook, who has been living with lupus for years and Lucy Vodden, a childhood friend of Lennon’s who recently passed away at the age of 46 after a long battle with lupus. Vodden was also the subject of a drawing that Julian created which inspired his father to write the memorable Beatles hit song “Lucy in the Sky with Diamonds.” Proceeds donated from the song, “LUCY,” will be shared equally by the Lupus Foundation of America, Inc. (LFA), and the St. Thomas Lupus Trust in London.

Sandra C. Raymond, LFA President and CEO, issued the following statement:

“We thank Julian Lennon and James Scott Cook for their generous support, which will not only help fund lupus research, but will also go a long way to help raise awareness and draw international attention to this perilous disease. All proceeds from the song will be restricted for use in LFA’s National Lupus Research Program, Bringing Down the Barriers, which directs grants to lupus researchers in academic medical centers throughout the United States for research on the causes and epidemiology of lupus, pediatric lupus, lupus kidney disease, cardiovascular disease in lupus, adult stem cell transplantation, novel approaches to the development of new treatments, among other areas.

“We applaud Julian and James for calling attention to the urgent need for lupus research. It has been more than 50 years since the U.S. Food and Drug Administration (FDA) approved a new treatment for lupus. In fact, to date there has never been a drug approved specifically for lupus, since the disease was discovered more than a century ago. Physicians who treat people with lupus often must rely on medications that have toxic side effects; some side effects are worse than the disease itself. For people with lupus, finding less toxic therapies is vital to not just their quality of life, but for many, their survival.

“Lucy Vodden and Lucy Cook represent people with lupus around the world who are either living with lupus, or have succumbed to the disease, demonstrating the varied and sometimes devastating impact that lupus can have on individuals and their families. This life altering disease typically strikes young women in their childbearing years, yet a public opinion survey demonstrated that 80 percent of women know little or nothing about the disease.

“Our hope is that the efforts of Julian and James will inspire others, and serve as a catalyst for the public to join us in working to change the future for the millions of people around the world like Lucy. We encourage people to pay tribute to both of these women and all those living with lupus by downloading the song ‘LUCY’ through iTunes beginning December 15, 2009.”

Related Information

Julian Lennon, decade later, back in music biz with ‘Lucy’

from   http://www.lupus.org/newsite/index.html

What is Lupus?

What is Lupus?

I stopped by my You Tube account the other day and I’m glad I did.  I got a message from Chandra, (theleepchatchannel), telling me about her new campaign for awareness.  It’s called LEEP for Lupus ™.  I really liked her video that described what lupus was.  If you’d never heard of lupus, her video is a great explanation of it.  I really liked the video and I know a couple of people that would benefit by watching this video.  Sometimes it takes hearing about it from another source for people in your life to ‘get it’.  Check it out!

New Ad Campaign for Lupus Awareness!

New Ad Campaign for Lupus Awareness!

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Hey everyone, I’ve been ‘offline’ for quite a while now.  I got hit by a flare that overpowered me, physically and mentally.  I’ll be posting about all of that fun stuff later.  First I wanted to get the word out about this exciting new campaign!

Are there any America’s Next Top Model’s fans out there?  I was hooked on the first couple of seasons.  Yes, I am a reality show junkie.  Well, Mercedes Yvette is the spokesperson for the LFA (she suffers from lupus) and was also a contestant on ANTM in cycle 2.  I always wondered why they called them cycles instead of seasons…must be a modeling thing, lol.  In Washington DC yesterday Mercedes (representing the LFA), the National Ad Campaign and The U.S. Department of Health and Human Services’ (HHS) Office on Women’s Health launched a new national lupus public awareness campaign.  Wee hoooo!  I get excited over this stuff folks!

The new campaign is setting out to help the public understand the disease, know about early warning signs for people at risk for the disease so that they can seek early treatment.  I am so excited about this. With the way things are progressing, I hope that soon everyone in this country knows what lupus is, does, and can do.

****Here’s a link to the campaign,http://www.couldihavelupus.gov/, check it out!

Until next time

Michelle

**** sorry, I posted the wrong web address earlier, I have it fixed…now go check it out!  🙂

LFA’s Advocacy Day for Lupus

LFA’s Advocacy Day for Lupus

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It’s hard to believe another year has blown by and it’s March and with that the LFA’s Advocacy Day.  This time last year I was under the impression that I had lupus.  All of my symptoms were ‘lupus-like’ (still are) and after my first blood work came back with a positive ANA, C reactive protein, and sed rate, my primary care doc called me and my hubby in and told us that he was sorry and that I had lupus.  I will never forget the look on his face or everything really.  The complete quiet after he said that, the smell of his office-antiseptic and mint, the clock ticking and my own breathing.  After leaving his office, we both broke down and cried.

It’s been a long road since the day in his office.  I’ve learned so much.  The very first thing that I learned was one +ANA does not a lupus diagnosis make.  Since there is no one test to verify lupus and a lot of autoimmune diseases have the same symptoms or overlap, it’s pretty tough to get a firm diagnosis quickly.  I read and read and read, anything and everything I could get my hands on.  I found a good online support group for lupus patients and also people who were waiting a diagnosis.  I learned more from those wonderful people than I did from any article.  After getting online and finding the group, I started reading blogs of people, usually women, who were living with SLE.  I started tossing the idea around in my head to start this one.  I ‘met’ so many absolutely amazing women and men while I was on my quest for knowledge straight from the source, the people who have it, I was awed by how open and truly helpful they all were.

I found one blog written by the husband of a lupus survivor (warrior, pick one, lol).  His blog is different in that it comes from the perspective of the other half of the team, the well one.  All of the frustrations in dealing with doctors and tests and being a husband and watching your wife suffer.  With no cure.  And with all of the other things that come along with living with a chronic illness that’s sneaky, cruel, and painful.

I was cruising my blogs and saw this post that Jeff wrote about Advocacy Day in DC.  Stop by his blog and have a read.  There are some cool tips on what we can do to participate even if we are not in DC today.

Until next time

Michelle

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Shout out-

Shout out-

to the LA Lupus Lady for doing her thing, again!  She really inspires me and I am so thankful that she gets out there, tirelessly I might add, and is promoting every event and every chance to raise money and awareness for lupus.  I posted last month about the event that’s still come in November, right here.  Not quite here, and not quite here, but-right-here.  Does anyone get that reference?  Anytime I say ‘right here’ it pops into my head and usually out of my mouth complete with hand gestures, ahhh, I’m a movie geek.

Without further ado, here’s the video and thank you LA Lupus Lady!!!

Blowing up my blog and handbags for Lupus!

Blowing up my blog and handbags for Lupus!

OK, I know nothing about code.  HTML code or any other kind of code.  sigh.  I got on the other day to write a post and I thought I would add this widget from a certain Social Networking site that rhymes with Casebook and blammo.  I lost half of my blog.  I got most of it back but I’m still missing some stuff from my sidebar and I can’t remember what it was, lol.  My brain fog is thick lately.  I’ll work on it later when my caffeine level is higher…

Here’s what I set out to write about-

I met this really cool lady while surfing around on YouTube.  Her name is LaLupusLady and she is making videos to promote awareness for Lupus and the fight for a cure.  I really admire her ‘get it done’ attitude, she is amazing.  Here is one of her videos, it was a fundraising event in May for Lupus.  Get into the loop!

She told me there were a couple of really cool events coming up to raise awareness and funding for lupus.  One of them is a silent auction for designer handbags donated by top designers and a few Hollywood stars!  From LupusLa.org:

With your help, a cure is… in the bag!

On Friday, November 7 Beverly Hills will be overrun with “Bag Ladies”—all rallying for the fight against lupus. More than 500 well-heeled women will gather at the Beverly Wilshire Hotel for the 7th annual Lupus LA Hollywood Bag Ladies Luncheon.

Join us for this highlight of the fall social season—a wonderful afternoon of friendship, fun and fashion, centered around a silent (but very lively!) auction of coveted handbags donated by the top boutiques in the city, as well as directly from the collections and closets of Fendi, Chanel, Hermes, Sharon Stone, Jennifer Aniston and Julia Roberts, to name a few. A runway show will cap off festivities… designers and celebrity models to be announced!

Honoring Dr. La-Doris McClaney
Lupus LA Woman of Achievement Award

This year at the luncheon the Lupus LA Woman of Achievement Award will be presented to Dr. La-Doris McClaney, a motivational speaker, writer and lecturer, and our first African American honoree. La-Doris spearheads her family’s longstanding tradition of charitable giving to a multitude of worthy causes, and when she found out her close friend was battling lupus, she generously lent her name and efforts to our cause. Lupus LA is proud and excited to recognize La-Doris McClaney.

It sounds like fun!  I am so addicted to collecting purses, although mine are more likely to have store brand name tags than designer tags…it’s all good.  I’m a little jealous that I won’t be there (a lot a bit) but if you live in the LA area, check it out.  It’s for a great cause and you could snag a handbag that came straight out of Julia Roberts closet!  I don’t care what anyone says, Pretty Woman is one of my favorite movies 🙂  If you see LALupusLady give her a hug, she is doing an amazing job at raising awareness for Lupus.  Wait, maybe just give her a handshake, we don’t want to scare her with a bunch of people heading for her with their arms wide open, LOL!!   For more info on the events coming up in the Los Angeles area check out LupusLA.org.

OK, now I’m going to try and fix my blog and figure out what the heck it was that I blew off the sidebar…

Til next time

You can find all the info at LUPUSLA.

My heart breaks for Chelsea

My heart breaks for Chelsea

I just got finished reading a most disturbing story of a teen who had lupus and died. She disagreed with the doctors treatment and wanted to go off of her meds because she felt the complications were ultimately hurting her worse than the disease. She wanted to look into other holistic options. DFC charged the mother with neglect and removed Chelsea from the home placing her with her grandfather. They even placed an armed guard at her door in the hospital so her mother could not remove her from the hospital. Chelsea wrote a letter to the Superior Court Judge, link here, asking for the right to choose her therapy and to be able to go home to her mother. I have a whirlwind of feeling flowing through me right now, anger, sorrow, outrage.

An excerpt from the letter:

“I have already tried what the doctors consider to be the standard of care for the past five years. I have experienced the horrifying side effects of them and realized that they have not helped me in any way. In fact, I feel I have gotten worse and now require dialysis,” Chelsey wrote. “In light of this, I no longer want to use them.”

This is a heartbreaking story of a teen that didn’t want the treatment that her doctor’s thought was best for her. It resulted in her being taken away from her mother, her losing the right to choose her treatment, and ultimately she died while still in the custody of her grandparent and away from her mother. I am so outraged right now.

Have you ever tried a drug that did more harm than good for you? I have. And no one told me I could not stop taking it, or took away my right to choose which direction I wanted my treatment to go. I’m crying for Chelsea’s mom right now, and for Chelsea who was not heard.

Links to the story

Girl in Medical Dispute Dies

Cruz Letter

Mother’s Rage Lives On

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