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Category: POTS

conference recap…

conference recap…

I was really hoping to get this out to you all before the end of 2016, but I’m 23 hours late. I hope you’ll all forgive me. [P.S. HAPPY NEW YEAR!] As you may remember, I attended the Connecting the Dots conference about POTS/MCAD/EDS in December and want to tell you a little about that experience. I believe the videos of the individual speakers at the conference will be made available early this year. I will post here once I…

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(wo)man’s best friend…

(wo)man’s best friend…

One year ago today, my life changed. This handsome fella came into my life: Today is Fletcher’s one year adoption anniversary. I first came across his adorable face when searching a local dog shelter’s website. When I saw his photograph, I immediately fell in love with Fletcher’s golden eyes. We made an appointment to see Fletcher, but were warned by the shelter that he was extremely shy. Shy didn’t even begin to describe him. He was petrified. Fletcher wouldn’t make…

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when good doctors happen to bad people…

when good doctors happen to bad people…

I’d like to think that I’m not actually a bad person, but I’m continuing a theme. After my previous “when bad doctors happen to good people” post – I forgot to mention the doctor who, after talking to me for about 3 minutes told me he couldn’t help me, then proceeded to ask me for free legal advice for the next 15 minutes – I thought I should share some recent positive experiences with doctors so I don’t seem like…

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#ThisIsChronicIllness…

#ThisIsChronicIllness…

Today marks the first day of Dysautonomia Awareness month, and tomorrow is the last day of Invisible Illness Awareness week, so I like to think of today as the “Invisible – Dysautonomia Vortex” where the two cross. The theme for Invisible Illness Awareness Week this year is “This is Chronic Illness” where people are encouraged to share a glimpse into their daily life. If you’d like to participate, more information is available here. I decided that my contribution to this…

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5k walk/run in springfield, oh…

5k walk/run in springfield, oh…

Friends (I call everyone “friend” – if you’re reading this post, we’re friends. Even if it’s not mutual. Deal with it.), if you happen to be in the Springfield, Ohio area, or know someone who is, and do not have plans this Saturday morning, September 24th, please consider joining this 5k walk/run for Standing Up to POTS, a 501(c)(3) organization that supports awareness and research. It’s not too late! You can even show up on the morning of the walk….

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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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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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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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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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