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Tag: Postural orthostatic tachycardia syndrome

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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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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POTS in the news…

POTS in the news…

For those of you that follow the latest research on postural orthostatic tachycardia syndrome (POTS) regularly, this is probably old news. But for those of you that don’t… A recent study out of an Australian university has discovered the genetic suppression¬†responsible for POTS. For a while now, researchers have known that something with the norepinephrine (aka noradrenaline) transporter (NET) gene (SLC6A2, found on chromosome 16) goes wrong in POTS patients. Apparently, a repressor protein called MeCP2 and a non-coding RNA…

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a dysautonomiac cancels her gym membership…

a dysautonomiac cancels her gym membership…

The title of this post is a long overdue follow up to my post, a dysautonomiac walks into a gym. In the near future, I hope to follow it up with “a dysautonomiac gets abs of steel, renews gym membership”, or better yet, “a dysautonomiac wins free gym membership with handsome gay personal trainer”, or even “a dysautonomiac wins the lottery, builds her own personal 5,000 square foot gym, installs pool, becomes a brilliant scientist and finds the cure for…

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happy POTSiversary to me…

happy POTSiversary to me…

I’m going to tell you a story about the woman in this photo.     This was taken a little over six years ago. She woke up after a restless sleep, like every other night that year. After donning some yoga pants and a sweatshirt, throwing her hair in a messy ponytail, and staring at her makeup-less face in the mirror for a few minutes, she gazed¬†silently out the window while her boyfriend drove her to the hospital. Her thoughts…

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conference videos…

conference videos…

Hi friends! In my previous post about the POTS/MCAD/EDS conference I went to in December, I promised I would let you know as soon as the recordings of the speakers were available. The videos are now up, organized by speaker and topic, at the Children’s Hospital of Orange County website here. Feel free to share that link with others who might be interested. If you watch any of the presentations, I’d be interested in hearing what you think! Come back…

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