Friday, March 28, 2014

A nod to the late PHB - a Vicki Award from Woodhull Sexual Freedom Alliance

What a wonderful surprise! Nine years of online activism and one award that I never expected to receive is a sexual freedom award. Does the content my former labor of love, Pam's House Blend's rate that honor?

The good people at the Woodhull Sexual Freedom Alliance (Facebook, Twitter) thought so, and contacted me recently to announce that I will receive its Vicki Award (and I'll deliver a keynote address) at the Sexual Freedom Summit  (@WoodhullSFA) on August 14-17, 2014, in Alexandria, VA. Hashtag: #SFS14.

About the award:
Established in 2010, the Vicki is named after Victoria Woodhull, the namesake of the Woodhull Sexual Freedom Alliance. Ms. Woodhull was an American suffragist born on September 23, 1838, who was described by Gilded Age newspapers as a leader of the American women's suffrage movement in the 19th century. She became a colorful and notorious symbol for women's rights, free love, and spiritualism as she fought against corruption and for labor reforms. A strong advocate for collaboration and for full equality rather than "just" individual rights, Woodhull was generations ahead of her time.
I am in terrific company. From the press release:

The 2014 Honorees

Carol Queen is an American author, editor, sociologist and sexologist with a doctorate in sexology who is very active in the sex-positive feminism movement.  The founding director of the Center for Sex & Culture in San Francisco, Queen serves as Staff Sexologist at Good Vibrations, where she’s worked since 1990.  Read more here.  

Cory Silverberg has developed and facilitated workshops for hundreds of agencies and organizations serving both youth and adults across North America on a range of topics including sexuality and disability, sexual pleasure, sexual communication, sex toys, and sex and technology. Cory has also delivered keynotes, lectures, and interactive public talks for professional conferences and student groups. Read more here.

Pam Spaulding considers herself an accidental activist.  The founder, editor and publisher of Pam’s House Blend, a startling honest and astute blog focused on the LGBT community, Pam has guest posted/contributed to Americablog, Pandagon, Firedoglake, The Rude Pundit, The Bilerico Project, Glenn Greenwald’s Unclaimed Territory on Salon, and written for The Independent Weekly.   Read more here.

The event will be a rare occasion for me these days - traveling, due to impact on my RA. Woodhull and its Executive Director Ricci Joy Levy have been very accommodating re: my need for rest and recovery. It's sad I have to live by the clock for meds and such these days. But I'll go down fighting.

Tuesday, March 18, 2014

Losing the RA battle and it's only Tuesday!

Made it through the usual fire of biologic med side effects that kill my weekends (Fri PM to Sun afternoon) so I can continue to work, but between the impact of a terrible weather front and an insane workload, I came home in searing joint pain everywhere today.

Bed time? 6:15 PM. That's a new record for me.

Anyway, the reason I'm up now is to take some more Aleve to tide me over till I have to get back up at 3:30 AM for the next cocktail of meds so that I'm functional at work tomorrow. Otherwise I'd rather be unconscious to recharge my limited body battery supply before I have to get back on the hamster wheel again.

Even the popular biologic RA drugs (like Enbrel, Humira, or Orencia) can't perform those miracles that Big Pharma portrays in those commercials you see on TV. They seem to air with greater frequency these days. These ads really downplay the serious side effects - the narrators speed through a partial laundry list while showing the sunny, compelling visuals of people opening jars, digging in gardens, tossing a ball with kids, etc.

I guess visuals showing patients writhing with chills, experiencing crippling fatigue, and communing with the potty for 2 days a week after dosing their meds probably wouldn't go over well with focus groups...

The drugs don't stop progressive joint damage for everyone either, or stop the chronic pain entirely. They temporarily relieve some inflammation and, to their credit, for me have reduced sick days to nearly zero, a huge relief. Hell, I worked (though I probably should have been out, but duty called) even while suffering from shingles agony for a couple of weeks. Before biologics, I was probably down and out on average a day a week; that was at first diagnosis in 2011.

BUT, my effective high-functioning ("gee, you don’t look sick") hours per day are continuing to shrink, in the slow, steady decline folks with RA (and similiar autoimmune disorders) are all too familiar with. I look in the mirror and can now easily see the toll of the battle of trying to hold on to "normal" as it fritters away.

Sunday, March 2, 2014

Another lost weekend...

This weekend has been quite pitiful. Between the shingles (in parts where you'd never want them), my weekly RA biologics making me feverish, sick & sore,  and the side effects from the 3x a day anti-virals for those shingles, I spent most of the weekend in searing pain, nodding out, or unconscious.

Thus no FB activity. I didn't have the attention span or energy to even pick up a tablet. Now that's bad for me.

Today's major "activities" -- since I'm sick of being sick from my declining autoimmune state and I'm stubborn -- involved limping, slow, short trips -- one to the grocery store, and briefly to Costco. That was so exhausting that as Kate drove the 15 min home, I nodded out, then needed a 4 hour nap. Saturday I was even more useless, if that can be believed.

I don't know if I'll be in any shape to work tomorrow since the anti-virals knock me out and I have to take one dose midday. (4 more days to go).