Tuesday, November 24, 2015

What the Bleep is in this can?

This song was inspired by my attending a conference where the ONLY thing to drink was Diet Cherry Vanilla Dr Pepper. (Dr Pepper already has 23 flavors in the first place!)

Wednesday, October 14, 2015

Selena Gomez "comes out" as a lupus patient

Lupus is still a fairly misunderstood illness. I still get strange questions about it, years after I was first diagnosed. Of course, I have to remember that when i was diagnosed, i'd never even heard the word "lupus" myself.

When a celebrity opens up about having an illness, it can potentially help bring more awareness and even more compassion to the illness, and more importantly, better understanding.

"Coming out" as a celebrity with a chronic illness is risky. There's the fear that people won't want to hire you for shows/ movies anymore because you might cancel the show/ perform poorly because you're sick. Decades ago, when celebrities developed cancer, they were completely hush-hush about it. They would find a doctor who would treat them in a remote place, under complete secrecy, and neither the doctor nor the celebrity would ever speak of it. Show biz is, indeed, a competitive business. No one wanted to jeopardize their career by admitting to not being in perfect health and able to work at the drop of a hat.

Speaking of hats, hats off to Selenaa Gomez, for talking openly about her recent diagnosis of lupus.

Tuesday, October 6, 2015

Online Lupus Chat Wed. 10/14 with HSS

The Hospital for Special Surgery is hosting an online lupus chat tomorrow.
The doctors and people there are really knowledgable and friendly.
So, if you have questions you'd like expert answers to, join in!

Monday, October 5, 2015

Having a Life When You Have an Illness

It's funny, being in "show biz," how most of us who have a chronic illness are secretive about it (I was for years) and are in fact, usually more reliable than artists who don't have an illness.

Back in 2002, I got up and did a show after I'd just had a stroke. My left hand wasn't working. I just sucked it up, told some stories and jokes and thudded along on the guitar with the few notes I was able to hit. I'm very stubborn...

For years now, I've been swinging back and forth between the two extremes of being a hypochondriac ("I broke a nail! Oh Lord- it's the lupus!") to being in total denial ("I haven't been able to feel my foot for 3 days. It'll pass. It's just lupus.") I think (I hope) I've finally found a balance, where I am able to live my dreams and keep my health.

Sometimes I have to binge-sleep after several long, tough days of too much work and not enough sleep, but I'm able to stay healthy, off the immune suppressants, and be creative and live a full life.

The truth is, if I'd never gotten ill, I'd have never had the courage to leave the unrewarding but "safe" world of retail and pursue my secret (even to me) dreams of sharing my songs with the world.

So here's a one of my non-medical funny songs about relationships. Because I don't want my whole life to be about being sick or not being sick. There's more to me- more to all of us- than that.

Wednesday, July 22, 2015

Survey for SLE patients with lupus nephritis (kidney involvement)

A small pharmaceutical company from Canada is developing an investigational drug for the treatment of lupus nephritis, and is conducting this study to demonstrate its efficacy and safety when taken orally twice daily when compared to placebo.  The study will last about twelve months and consist of about 13 visits to the study clinic during that time.

Volunteers who participate may or may not benefit from taking the study drug, but will be contributing to research that may well help those suffering from lupus nephritis in the future. Also, they will have more tests and clinic assessments through the study than they would normally have in the course of their treatment, which may allow their own doctors to more thoroughly assess their condition.

If you’d like to take a look at the study website, it’s located at https://www.yourlupusstudy.com.   This page also has the pre-qualification questionnaire that will help volunteers know if the study is a good fit for them.

As with any research study, your private medical information will be assiduously protected if you choose to participate in the study.