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Reblog: Sept. 30th, My Visibility Day

Reblog: Sept. 30th, My Visibility Day

One of the blogs I follow, Dysautonomia Dorothy, recently posted about starting a “Visibility Day” on September 30th, during Invisible Illness week, which runs from September 26th to October 2nd. For more information on Invisible Illness week, click here. I think it’s a wonderful idea to have a day where we bring awareness to our invisible illnesses by making them visible. So, read Dysautonomia Dorothy’s post linked below, and if you’re so inclined, wear a t-shirt, button, sign…whatever you want…

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when bad doctors happen to good people…

when bad doctors happen to good people…

I feel like most people with complicated chronic illnesses deserve honorary medical degrees. Every week I spend countless hours reading medical journals and researching different illnesses. The number of doctors I have had to educate on my condition is astounding. I actually left my old PCP because he had never heard of postural orthostatic tachycardia syndrome (POTS), and didn’t seem to have any interest in learning about it. I see a cardiologist for my POTS, but its important that the…

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understanding invisible illness…

understanding invisible illness…

Like usual, I’m behind on my blog posts. I have about 5 drafts on different topics, but have yet to find the time to finish any of them. As you know, lots going on around here lately with my mom participating in the PSP study, and my blog is suffering. So, I was pleased when Victoria contacted me and asked if I would be interested in posting some of her content on my blog. Victoria owns the website Burning Nights about…

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round two…

round two…

If you’re a regular reader of this blog, you know that for the past six months I have helped to take care of my mom part-time. She was diagnosed with progressive supranuclear palsy (PSP), a degenerative brain disease in the Parkinson’s family, last October after years of showing symptoms. Six months ago, my mom was accepted into a drug study at UCSD for a new drug currently undergoing clinical trials. The study was originally for 7 months, and at this…

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dysautoFAQs…

dysautoFAQs…

I often receive email from people who read my blog. Some ask questions, some share their story, some just like to vent – all are welcome. I have even made a few email/texting friends that way, which has been a huge unexpected bonus to writing this blog. You are welcome to email me anytime at Lindsay@Dysautonomiac.com. I try to answer every email, so if you don’t hear back from me, resend it. I’m not an expert on dysautonomia/postural orthostatic tachycardia…

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just an update…

just an update…

I feel I owe you all a follow up after my last few posts. After having a difficult time for a few weeks, I finally started to feel a little better this week (assuming 2.5 day migraines don’t count). My mom returns tomorrow for her clinical drug test and will be here all next week, so the timing is perfect. I seem to have established a regular pattern where I push through my mom’s visit, feel awful for a while…

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dysautonomia in the news: muscarinic receptors…

dysautonomia in the news: muscarinic receptors…

If you are ever interested in reading any news articles that mention postural orthostatic tachycardia syndrome (POTS) or dysautonomia, I have a Scoop.it page where I collect such articles. Some are stories in small town papers about a local teenager with POTS, others are scholastic journal articles. Dysautonomia International, a non-profit that seeks to raise awareness for all types of dysautonomia, recently released a preliminary study conducted by Dr. Steven Vernino. The study tested POTS patients and controls for serum…

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the pedal for POTS party…

the pedal for POTS party…

A brother/sister duo have been bicycling across the United States to raise money and awareness for POTS. According to the Pedal for POTS website, Ari and Alix have been riding their bicycles “from Florida to California for POTS, an often debilitating neurological disorder resulting in, among other things, reduced blood flow to the brain, rapid heart rate and chronic fatigue. POTS will eventually become a household name, and this bicycle tour will accelerate that process.” Their ride concludes this Saturday, May 21st, 2016…

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mutual assured destruction…

mutual assured destruction…

Lately I enjoy listening to podcasts on my way to and from work. It all started with the “Serial” podcast, but after I finished seasons 1 and 2, I found I missed having intellectual stimulation during my commute. Upon the recommendation from a friend, I discovered a few podcasts that I have come to love. One such podcast discusses short history topics. Recently I listened to an episode on mutual assured destruction – or M.A.D. – that got me thinking. Mutual…

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uncontrolled…

uncontrolled…

Anyone who has met me wouldn’t be surprised to hear that I think I’m a bit of a control freak. It probably then doesn’t come as a surprise to hear that I like having control over my body. Having postural orthostatic tachycardia syndrome (POTS) tends to throw the occasional wrench is my well-oiled wheel of bodily control. Unfortunately, as I recently discovered, so does stopping certain prescriptions. About ten months ago, I stopped taking birth control pills. For a control freak, this…

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