Tuesday, June 30, 2009


I just signed up to take a class at the PIT (horrible sounding name! but it stands for People's Improv Theater). It's a class on writing one-(wo)man shows. I've had this yen for bout 5 years now, and keep trying to squash that little voice. But I'm going to go take the class, because if you don't learn anything else from having a stroke and kidney failure, you learn that you only live once. And I'm in good enough shape to get over my New-York-city-o-phobia to go take the class. 9 times.

I remember seeing Dead Poet's Society (movie) shortly after recovering from my first horrible bout with the big L. Thats was 15 years ago, but I remember Carpe Diem! Seize the day! And that the main character killed himself because his father would not allow him to pursue his dreams.

In Bernie Seigel's book, Love Medicine and Miracles, he asks all his patients what their lives were like for the one year before they got sick. In my life, I had squashed myself down into a life I hated- a job I hated, a church where I didn't fit in in a town I didn't like, and living in a trailer park where one of my neighbors broke in on my just a week after I moved in. While I was there. Sleeping. (He's in jail, last I knew). Is this a recipe for health? (That's rhetorical). My family moved me back home to my hometown. I got a fresh start. When I started to regain my strength, I decided to rebuild my life from scratch, but on purpose this time, architecting a life that was worth living.

Will that save me from ever getting sick again? No. But my life is worth living now.

I've bought about 6 copies of this book over the years. it was life-changing for me:

Thursday, June 18, 2009

Gluten-free pizza!!!

hey you gluten-free pizza lovers!
I just got back from Uno's Chicago grill, where I had my first pizza in a restaurant since going gluten-free last fall.
Uno's is a national chain and they are doing gluten-free pizza right- they take it very seriously. The chef has to change gloves before working with the gluten-free ingredients; the sauces and other toppings for the gluten-free pizza is kept entirely separate from the toppings for the regular pizzas, and the manager personally brings the gluten-free pizza to the table. With all that care, once it arrived, I felt like i was getting the Hope Diamond.

Since going gluten-free, I've been restricting myself when eating out to either eating Japanese food- and i have to bring my own gluten-free soy sauce (most soy sauce has wheat in it for some reason) or mexican food (but not burritos or quesadillas- only tostadas, tacos, rice and beans and corn chips). I also go to Charlie Brown's steakhouse (they're like wildflowers in new jersey)- they have a great salad bar and delicious salmon.

But now I can have pizza. So can you and all your friends with celiac disease or other gluten sensitivities!

Not only that, it gives me another national chain I can search for when traveling.
Thanks, Uno's, for doing this, and doing it right.

Monday, June 8, 2009

stresssssssss (and lupus)

just got back from the doctor. sed rate=66, temp= 99.8. :(
my strict vegan + gluten free diet is not enough to counteract all the stress.
stress? what stress? Well, I got tons of work in March, plus I filed for bankruptcy, which really freaked me out, plus I'm writing a book, plus my mom sent me 20 boxes of moldy crap that I've left in their basement since having a stroke 7 years ago, which sent me into a fibro attack. I recovered from that only to end up with either morton's neuroma or plantar fasciitis (constant excruciating foot pain- unless i don't ever put any weight on my foot whatsoever, even to get up to go to the can). I went on "vacation"- meaning, we drove 2500 miles round trip, it rained the entire trip and i was in constant foot pain. While on "vacation" I went to a foot doc and he gave me vicodin. All it did was make me sleepy. My foot was still killing me. I finally go some acupuncture and aspirin and it's doing much better, but now I'm freaked out over the string of lupus-ish symptoms- fibro, swelling joints, foot pain, positive lupus lab results... Smells like i'm sliding back downhill towards either a hospital stay (NO!!!!) or prednisone (NO!!!!).

Sometimes I wish I were an "earthling" and I could just have a beer (not an option) or go for a jog (not an option) to blow off some steam and de-stress. Or drink a ton of coffee (not an option) and just power through the stress (not an option). The fact is, once you've got an autoimmune condition/ tendency, you have to make hard choices every day. One of my friends a while back suggested we go shopping and have dinner in the evening, and maybe earlier that day we could go do something else. I had to explain - to both her and myself- that i can only do one big thing a day. If I schedule 2, I might survive them both, but there won't be enough of me left to enjoy the second one. And it will ruin me for my one big thing the next day.

If I pace myself, and do only one big thing a day, I could very well end up doing 365 really neat things in a year. Well, maybe only 300, because sometimes my one big thing is laundry. Still, 300 neat things in a year is pretty great- barbecues with friends, going to the arcade, doinga comedy open mic. But if I don't pace myself, I can end up wasting a lot of time flat on my back in bed watching reruns, staring out the window, and popping pills to kill the pain.

The good part about knowing you have limited resources is (hopefully) you don't squander them on stupid stuff. One of my friends is raising 2 kids (he's a stay-at-home Dad and his wife has a corporate job). At night, he pursues his dream of being a songwriter. Well, being a husband and dad, he can't be gone all night every night, and he's busy all day with the kids- so he has to choose his opportunities wisely. And he tells me this helps him make better choices about the gigs he takes and how he spends his allotted "songwriter" time. It's not just those of us with serious illness having to make hard choices. And given the choice, like everyone else, if I could swap lives with my friend I would not. I've got some skills for dealing with the "devil I know" and would be overwhelmed if I had to learn an entire new set.

I can deal with this. I just need to vent sometimes.

i was able to talk my rheum out of putting me back on prednisone (for now) (I'm just not ready to lose my looks and my locks a 4th time if there's a way around it) and just get some fancy aspirin and topical anti inflammatory. but i'm going to have to start getting lots of acupuncture and learn to handle stress better or I'll be in for hospital stay/ prednisone hell #4. stress is the worst thing for autoimmunity, and stressing about autoimmunity is the strangest irony i can name at the moment...