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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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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pre-existing…

pre-existing…

Hello. My name is Lindsay, and I’m a former Republican. (Hi, Lindsay!) It may not surprise you to hear that, as someone who holds an undergraduate degree in political science and a law degree, I’m slightly turned on by a good political debate. However, I have a longstanding rule: I don’t discuss politics on the internet. I’m about to break that rule. My reasons for registering as a Republican when I first turned 18 were actually very non-political and no longer…

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