Quote of the week:

“They'd have to shoot me to get me back to Illnois."

~Abraham Lincoln upon going to WDC to become president

Sunday, July 6, 2008

Serious Chronic Illness* pays off, Once Again!

Last December, I wrote a post about being asked to be part of a focus group regarding CVID, (the illness/ diagnosis I have).
*–sidebar—I never quite know what to call it. Disease doesn’t seem to fit, as it’s not something communicable, and not something I caught from someone else (other than possible in utero); ‘condition’ doesn’t really fit either; which leaves me with illness, but that doesn’t seem to fit either, because it’s actually other illnesses I get (bronch, sinus, (and now apparently ear infections). So, I end up calling it ‘my diagnosis’. What do I call it? Any recommendations, Dr. Mark?
Anyway, I had an email from the Primary Immune Deficiency Foundation, that there was going to be another focus group for Immune Deficiency (non-HIV) patients who receive infusions of IgG. Once again, it pays an honorarium and mileage. However, there was no mention of snacks this time. If I could get one of these gigs every month, I could start breaking even on my monthly meds co-pays at Walgreen’s!
The focus group is next Saturday. I’ll give a report after it occurs.

6 comments:

GDad said...

PITA Syndrome.

I'm happy that you have these opportunities to help out with a cause so close to you. Keep fighting the good fight.

mark's tails said...

I like gdad's idea, but you can call it what ever you want.

gay CME guy said...

Like "wtf", I was using the accronym PITA, back in grad school days WAY before it was a part of the popular culture lexicon. I'm such the pioneer, that way!

I'm going to have to work on a new accronym to unleash to the unsuscpecting public.

Rosalind Joffe aka cicoach.com said...

I've lived with a chronic illness - MSfor 30 years. People sometimes ask if I'm one of Jerry's kids. i didn't catch it and it's not communicable but it sure is an illness as far as I can tell. It's not a state of health. There's no "stigma" but plenty of wrong info and lots of biases around this. I coach people with chronic illness -- but I still find it tricky to know what or when to talk about it when I meet new people -socially & casually. "Oh, by the way, I trip because I have bad balance because I have this disease called MS - it's not because I had that glass of beer." Sometimes it's easier letting just not to explain. Sigh.

gay CME guy said...

Hi Rosalind, Thanks for stopping by and for posting. When I traveled to a conference in January, I got surgical masks from one my docs at work. As I have a lot of professional peers in the Chicagoland area, travelling incognito is not really an option. It was the questioning looks of pity from people I know, but have not shared my medical history with that irked me.
I think many assume I'm HIV, and it's easier to let them think that rather than explain the reality. As I am wont to say, "WTF".

GDad said...

My new acronym is BOATS (based on a true story).