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Tag: Dysautonomia

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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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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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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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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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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a dysautonomiac exercises at home…

a dysautonomiac exercises at home…

Because I have dragged you all through numerous posts about exercise, like this and this, I kind of feel like you’re along for the entire journey, and I owe you status reports. You’re like my spotters, and I owe you a thick, goopy protein shake for keeping me motivated. So, drink up, friends. I have a Fitbit. I know…..who doesn’t, right? When I first quit the gym and ¬†began working out at home, I set a daily “steps” goal. I…

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