I was looking through a book given to me in Spring of 2009 when I had my first flare-up of lupus, or something “lupus-like,” called New Hope for People with Lupus by Theresa Foy DiGeronimo, M.Ed.  I’m particularly interested in a passage about stress: “STRESS ALERT.”  Especially coming out of the holiday season when stress is running at a high, this passage seems useful, but also unrealistic.

“While you’re learning to recognize and release the body’s negative physical responses to stress, you should also help your body avoid this tension to begin with by learning to reduce the amount of stress you expose yourself to each day.  No one can eliminate stress completely (and who would want to live such a boring life!), but you can be on the alert for situations and people who tend to fill you with stress.  If you know that trip to the amusement park with your kids and their four friends will push you over the edge, don’t go!  If you know that a coworker’s constant complaining and negative attitude make you feel tense, avoid her!  If your job is so hectic and pressured that you feel you’re about to explore every day of your life, think seriously about finding a new job.

As someone with lupus, the quality of your daily life can be severely affected by the amount of stress with which you have to contend.  So take an inventory of where excessive stress may be coming from and do something to change the situation.  This is one area of your treatment plan that you have the power to control.  Take a deep breath right now and promise yourself that you are going to do yourself the favor of avoiding stressful people and places.” (187-188)

The letter from my last rheumatologist visit describes my “increasing anxiety and depression, a lot of pressures since she is applying for a PhD program.”  Should I not be doing this for my education and career because I have an autoimmune disease and “shouldn’t” put myself this stress?  Am I choosing to do something that is bad for me?

Image found at

drug trials

An article in this weekend’s NY Times, “New Drugs Stir Debate on Rules of Clinical Trials,” brings up issues of the current system of clinical drug trials in the US required for FDA approval before hitting the market.  This article looks at PLX4032, a new drug used to shrink melanoma tumors and help improve quality of life, though maybe without extending life expectancy.  Two cousins are at the center of this article, both with melanoma, both in the clinical trial, though one was given the new drug and one was put in the control group, meaning he received standard chemotherapy treatments. The one in the group with the new drug improved and the one that received the control died.

This issue brings to the fore what many doctors in the article say is a dated drug approval system.  There are three phases a drug must pass before FDA approval, each phase with a different set of rules and criteria.

Recently, a new drug for lupus treatment, Benlysta, passed through Phase III, but I still haven’t seen it on the market – supposedly it will be available by the end of the year and will be the “first new approved drug for people living with lupus in more than 50 years” – Benlysta website.  50 years is an extremely long time for those living with this chronic to wait, while in the meantime being treated by drugs originally made as antimalarials – the connection between the antimalarials and positive reaction in lupus patients still being unknown.  Is this system working?  Or is it not?

Chicago Lupus Walk!

There’s going to be a Lupus walk in Chicago organized by the Lupus Foundation of America’s Illinois Chapter!  Well, 2 actually: one downtown in Grant Park (Saturday, Oct 2nd) and one in the Western Suburbs (Sunday, Oct 3rd).

This event is a fundraiser for lupus research and also a public awareness initiative.  I found a statistic from another lupus walk website – Lupus Research – one that already happened this summer, that said 2/3 of the public don’t know anything about lupus!  This is astounding!

I am going to register a team this year for at least one, maybe two!  If you would like to join my team, contact me!  meredith [dot] kooi [at] gmail [dot] com

If you would like to register as an individual or create your own team, click here.

Lady Gaga has lupus?…

In an interview Lady Gaga gave on Larry King Live, it came out that she might have lupus.  Supposedly it runs in her family and she shows signs of it – fatigue – and i’m guessing maybe she shows autoantibodies in her blood.

Click here to read an LA Times blog about the interview – it contains a statement from the Lupus Foundation about the issue of being according to Lady Gaga “borderline” positive.

Click here for a video of the interview.

Lupus can take on average 4 years and 3 doctors to diagnose – me, i’m at 1.5 years about and 3 doctors, so… Also, there hasn’t been a drug made or approved for lupus for about 50 years!  Yep, those of us who are living with the chronic illness have to rely on steroids and anti-malarial drugs, which for some reason help manage lupus symptoms.  We call it our “maintenance drug.”  Maybe this can change though with enough public awareness and outreach.  If Lady Gaga could use her popularity and fan count, maybe something could happen with the dismal state of lupus research.