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!

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.
 

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.

Survey for SLE patients about communicating with family

Request for Assistance with SLE Research

Jun 4, 2015

 

Hello! I am a doctoral student in the Department of Communication Studies at the University of Nebraska-Lincoln. My research centers on health communication processes. I am conducting my dissertation research that I hope will improve our understanding of communication in family contexts for women with systemic lupus erythematosus (SLE). As someone who has SLE, I am interested in research that is aimed at better understanding the way that families communicate about SLE and what the implications are for this communication. Ultimately, I’d like this research to lead to a better understanding of how communication in our families can help us orient toward the disease and treatment of the disease in positive, constructive ways.

To participate: Participants in the states of Nebraska and Alabama must be at least 19 years old or older to participate, participants in the state of Mississippi must be at least 21 years old to participate, and participants in all other states must be at least 18 years old to participate. If you meet these requirements, have been diagnosed by a medical physician with SLE lupus at least one year ago, and have 15-30 minutes to complete an online survey, you can be a part of this exciting research!

To access the survey and participate in the research, simply click on this link: https://ssp.qualtrics.com/SE/?SID=SV_dgaALt3TLhSfTil. I would really appreciate your time. When the study is concluded, I would be happy to share the results with you. Thank you for considering being a part of this important research!



Kathy Castle

 Katherine M. Castle                                                    Dr. Jody Koenig Kellas
Phone: (402) 472-5658                                               Phone: (402) 472-2079
Email: kcastle4@unl.edu                                            Email: jkellas2@unl.edu

Positive Addiction

I don't know exactly how to say how happy I am when I'm completely engrossed in music, whether it's writing, recording, rehearsing, performing, editing, attending a great concert. A day spent doing what you love is a day well-spent. And "a day well-spent brings happy sleep." -Leonardo DaVinci

I've  played music from the time I found the pots and pans. I got a xylophone for my first birthday (thank you, Uncle Rod!). I had recorders, a drum, an accordion, a JCPennrey guitar, all before first grade. I've always been drawn to music.

Once I started taking guitar lessons (had to wait til I was 8), I was very committed to practicing. I walked to my lessons, rain or shine, and practiced every day, I started school band as soon as I was old enough, and changed instruments every year, because I practiced so much I got bored.

When my parents bought a piano (I think they got it for my little sister), I added in piano lessons (my guitar teacher only taught beginners, so those lessons were over). At one point, I was juggling practicing 5 instruments (tuba, clarinet, flute, piano, guitar). It wasn't stressful, because I loved practicing. I rigged my double-cassette deck to make quartet recordings with myself. I lost all track of time.

I'd be playing the flute for hours, and my Dad would come downstairs at 2am: "what the is wrong with you! it's 2am! people are trying to sleep!" Oh.

But at some point he mentioned that he had read a book about "positive addiction," and he thought that was what music was for me.

Maybe. There are a number of ways to describe the phenomenon of someone being completely wrapped up in what they're doing: a passion, being in the zone, positive addiction, mental illness...?

Being happy is an important part of being healthy. After all, health is not just about physical health. According to the WHO (World Health Organization),"Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity." (Even the government has a holistic view of health!)

What do you love to do that makes you lose all track of time?
Are you making enough time in your life for it?

Carla
The Singing Patient
http://thesingingpatient.com/