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Category: Dysautonomia

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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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 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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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 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 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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