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Category: Chronic Illness

invisible…

invisible…

Today marks the end of Invisible Illness Week and, as you may remember, October is Dysautonomia Awareness month. In the past I have helped organize events and fundraisers during the month of October, but didn’t get around to it this year. I’m setting it as an intention for next year. If you’ll bear with me, I’d like to tell you a story that illustrates why dysautonomia and invisible illness awareness are important to me. As you know, I recently traveled…

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options…

options…

I have been on a beta blocker since I was diagnosed with postural orthostatic tachycardia syndrome (POTS) in 2011. Initially, I was prescribed 25mg of atenolol once per day. Beta blockers work by blocking norepinephrine and epinephrine (adrenaline) from binding to beta receptors on nerves, which reduces heart rate and blood pressure. Thus, beta blockers are primarily prescribed for people with high blood pressure. For those of us with normal BP, beta blockers can result in hypotension. For the first few…

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alone…

alone…

I have always loved the sound of nothing. The audible noiselessness of an empty room. Living in a house with three other adults and a crazy dog, I don’t experience it often. Ever, actually. So you can imagine my excitement when I offered to spend last week housesitting for my sister. A whole week of just me, a quiet house, and yes, a dog, albeit a perfectly sane and mostly silent dog.  At home, I don’t leave my bedroom without…

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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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