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Month: November 2009

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’


Tenacious Tuesday

Tenacious Tuesday

I used to work in a drug and alcohol inpatient rehab facility.  That’s a mouthful.  Each night I would come in and meet with the swing shift nurses and get caught up on who just came in, what their drug of choice is (that would determine their detox protocol) and who was the troublemaker of the day, there always was at least one, and so on.  These people who came in to detox, they were in for probably one of the hardest things that they’d ever had to do, emotionally and physically.

After report I would go and check everyone’s vitals, see if they qualified for any medications.  Some of the patients wanted to talk, others wanted me to just get the hell out of their rooms as fast as possible.  None of the patients wanted anyone to be a part of their nightmare, as they called the withdrawal process, to see them at their worst.  Most were embarrassed and wanted to make sure that I understood that they weren’t bad people.  I loved my job, I felt that I had found my calling, but I was so soft.  I couldn’t get that hard-ass attitude that was needed when they would try to trick you into letting them break the rules.  Drug addicts are the best manipulators in the world.  I know, I was with one for 10 years.  All of this is coming back to me today.  Today I am in withdrawal.  But I am home-not in a facility, I’m not an addict but a chronic pain patient, and no healthcare team is seeing me at my worst- my family is.  I am dosing down off of a narcotic pain medicine that does not lower my pain levels.  Withdrawal is part of the package, you can’t tell your body to mellow out, I wish you could.  Am I an addict because I take pain medications?  I say no.  I am trying to survive, and have a quality of life that is livable.

I have been through so many different ‘things’, the only word I can come up with, with this disease.  It has ripped me apart.  I have found strength in myself that I have never known.  I have come face-to-face with prejudice.   Hatred almost.  For taking narcotic pain meds.  Some people think that I shouldn’t.  I’m not a cancer patient! To that I say, no I’m not.  A cancer patient has foreign cells attacking their body, I have my own cells attacking my body.  Why would the pain be different?  Because everyone knows what cancer is. and autoimmunity is not that well known. A cancer patient has a chance for therapy to eradicate the foreign cells with chemotherapy and radiation.  It doesn’t always work, but there is a chance for recovery.  I don’t have that chance.  They can’t kill my own cells to stop them, they are mine- not foreign.  There is no cure for me.  I am in the process of finding the right mix of medications to stop or slow down my system from attacking me.  Some days I wish I had cancer.

Wow, what a rant!!  Like I said, I’m in withdrawal.  Self-induced to get off of one medication so I can try another that hopefully will bring my pain level down enough so I can live my life without constant pain.  An article showed up in my email and it is about chronic pain patients with depression.  After reading it I was so pissed, until I remembered-people just don’t get it.  If you are CHRONIC PAIN patient, your pain is there ALL THE TIME.  Acute pain, probably get a scrip for pain meds and then none because the pain goes away.  Chronic pain=always. sigh.  The first paragraph of the article states that ‘they are more likely to stay on them long-term’, duh!! If you find something that works, you stay on it!!  Your chronic pain isn’t going anywhere.  Also, ‘they are likely to become dependent on them’. another duh.  Where are the statistics in this article that states that people with legitimate chronic pain are less likely to abuse narcotic pain meds than ‘regular’ people.  I’m going to have to find that now.  I am a chronic pain patient.  I am on one of the biggies for narcotic pain medication.  It’s not working for me.  I am dosing down off of it so I can stop taking it.  I will try something else.  I’m not stuffing more and more into me.  I’m doing the logical thing.  I think most chronic pain patients would do the same.  All we want is to be pain-free, or at least a tolerable pain so that we can go about living our lives as we used to be able to!  Story below that got me on this rant.  Until next time


Depressed pain patients more likely to get opioids: study

Reuters Health UPDATED 2009-11-18According to a new study, chronic pain patients who suffer from depression are more likely to be prescribed narcotic painkillers such as morphine and codeine. Researchers also found that depressed patients were more often given higher doses of these opioid medications, and they were more likely to remain on them long-term. Researchers say their finding suggest that more study is needed on narcotic prescribing practices for depressed patients, especially given that they are more likely to become dependent on these drugs.  Read full story >

via Depressed pain patients more likely to get opioids: study.

Time off for bad body behavior…

Time off for bad body behavior…


Hey all, I’m baaack!!  What a long strange trip it’s been…These last few months have quite possible been the worst time in my life. I developed full-blown Cushings Syndrome complete with 90 extra pounds-all in the stomach, neck and lovely fatty back hump.  I won my disability appeal and then got screwed out of my arrears…I received a check for SIXTY-FIVE DOLLARS for 3 years of back pay (that will be a post all on its own) I also developed ‘chronic edema’ which I didn’t even realize was possible.  I thought if you held water, you could take medicine to pee it all out.  Guess what?  I’m keepin my water, it hurts, and it’s baffling to my docs.  I had a transvaginal ultrasound and a CT scan to look at my bladder, uterus, kidneys and adrenal glands and everything looks good except I have fibroids in my uterus now.  On a side note: my doc admitted that when he sees my name on the schedule he gets nervous.  He says I’m an anomaly.  I’ll probably look that word up some day.  My physical issues seem to just keep piling up and getting more baffling to the docs, and we have had many emotional jolts along the way that pretty much have almost shut me down completely.  My father’s Alzheimer’s has gotten worse at an alarming rate, it’s killing me to see him suffer.  And, Ms. Bean’s language barrier is frustrating her to the point of alot of screaming and cawing(sp).  Her baby sister, the Nug, is 15 months old and she is rapidly learning words and phrases.  The Bean loves the Nugget like crazy but I can see the jealousy starting to creep in.  I wish we would have started sign language early, I think I would like for us to try now.

OK, that was my machine-gun synopsis of some of the crazy stuff.  It is important to me to keep this blog going, but I have to keep me going first.  There was this day, this really really bad day.  I wanted to open my computer and write.  Just write until I had nothing left and I remembered I couldn’t.  I had found out through another blogger, that a health site that I belonged to had the rights to my blog’s writings, photos, the whole thing.  By me setting up my blog feed on their site I was giving them all rights.  Of course I didn’t know this nor did I see it in their TOU when I signed up.  But who really reads every word of those?? Me from now on!! I was livid.  I got on site to cancel my account, and wouldn’t you know it?  There was no link to click to cancel.  I had to write to support.  I received an email response from the doc who ran the site instead of support, which I thought was weird, but not when you know that you are being scammed into releasing all of your copyright rights to a website. I waited a couple of weeks before posting this, we’ll see if it turns up anywhere else……

OK.  If you are still here, congrats you sat through a dreary post.  Apologies.  It’ll get better.  🙂  It’s good to be back.

Until next time


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