acupuncture and other ‘alternatives’…

acupuncture and other ‘alternatives’…

Just this past week, I received acupuncture, started taking Chinese medicine, and took a yoga class. You guys, I am holistic as f*ck. Acupuncture This was actually my second appointment with the acupuncturist. I first went to see him for a couple of reasons, primarily back/neck pain and hormonal imbalance (yes, still – my hormones are stubborn little jerks). Apparently he’s known as the baby-making acupuncturist. I heard he is responsible for eleven women, three men and two dogs suddenly…

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exit interview…

exit interview…

If you have followed this blog for a while, you know that my mom and I are study participants in a clinical trial for a new drug at the local research university here (you can read about it in my¬†job interview¬†post and here). My mom, who has a degenerative brain disease called Progressive Supranuclear Palsy (PSP), receives an experimental drug via infusion once a month. The university conducts regular tests to measure the efficacy of the drug and ensure she…

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a notice for my soCal friends…

a notice for my soCal friends…

A notice was posted at my cardiologist’s office that Scripps La Jolla offers Yoga for Dysautonomia every Wednesday evening at 6:15p.m. at the Schaetzel Center Building at the Scripps Memorial Hospital campus. I think the address for the Schaetzel Center is 9890 Genesee Avenue, La Jolla, CA 92037 (please double check that before you go). Here is the flyer that was posted: I have not been yet, but hope to make it soon. Classes are free, and it sounds like…

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the finality of the fiasco…

the finality of the fiasco…

Oh my God, you guys. Guess what was waiting for me when I arrived home on Thursday??   Cromolyn sodium oral concentrate! FIVE boxes of cromolyn sodium oral concentrate! 11.2 POUNDS of cromolyn sodium oral concentrate! That’s 5 KILOGRAMS OF CROMOLYN SODIUM ORAL CONCENTRATE!! Yes, I actually balanced five boxes of cromolyn on my bathroom scale. I have a lot of free time. I can’t even hazard a guess as to how long 11.2 lbs of cromolyn will last. Hopefully…

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WEGO health awards…

WEGO health awards…

Hey friends, Every year WEGO Health hosts its WEGO Health Awards, where patient advocates are nominated for different awards. This year, I have been nominated for a Best in Show: Blog award!! I don’t know what that means, but judging by that movie “Best in Show”, I think it means you all love my adorable dog and find me to be a little bit quirky. If you’d like to vote for me, click the badge below: I don’t know who…

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my cromolyn fiasco…

my cromolyn fiasco…

Fair warning: I am likely going to drop an expletive or two in this post, because I’m very annoyed. Current frustration level: F-bomb. For mast cell activation disorder (MCAD), I take a medication called cromolyn. Actually, if you want to get technical, its “cromolyn sodium oral concentrate”. It consists of these little tubes filled with clear medication that come latched together in a discreet package. Discreet shiny, glittery, crinkly “let me see how many people I can make stare while…

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a love letter to my friends…

a love letter to my friends…

Growing up, most of my friends were boys. I was into riding bikes and playing video games, and most other girls were not. As I entered my teens and 20’s my closest friends were female, but the majority of my friends were still males. Generally, I always felt that I got along better with men. While that’s probably true, as I entered my 30’s I began to realize that I get along best with kind, brilliant, funny, drama-free women. In…

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i need the D…

i need the D…

Friends, I need the D. You know how when you feel like you’re in a rut and you’re not feeling sexy, you know you just need to get some D? Late at night, when you first wake up…it doesn’t matter when you get it. You even consider getting some D outside in broad daylight. Sometimes you know you need it so bad, you’re even willing to pay for the big D. That’s soooo me right now. I’m dying for some…

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hair loss and chronic illness…

hair loss and chronic illness…

I’d love to tell you that before developing postural orthostatic tachycardia syndrome (POTS) and mast cell activation disorder (MCAD), I had silky, lustrous locks. But that would be a lie. I have always had unfortunate hair. I was born with a thick black mop atop my head. As a little girl, it lightened up a lot and had cute little curls on the ends. But then I turned into a bit of a tomboy and my mom cut off all…

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POTS/ Ivabradine study…

POTS/ Ivabradine study…

Hi all, I thought I would share a research study that was sent to me from ResearchMatch.org, the website for the organization that provides information on available research studies. Apparently, a cardiologist at the University of California, San Diego is conducting a study to determine the effects of ivabradine on people with postural orthostatic tachycardia syndrome (POTS). If you’re not familiar, ivabradine (brand name: Corlanor) is primarily prescribed to treat heart failure. It also slows heart rate, leading POTS specialists…

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