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Category: Chronic Illness

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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the patient caregiver…

the patient caregiver…

I have mentioned this before, but being a patient who is also a caregiver is one of the more capricious dichotomies of my life. I certainly never expected to be a patient at this age, and I hoped for a couple of decades before I would become a caregiver. When I talk with other caregivers (who are usually my mom’s age, taking care of their parents who are my grandmother’s age),  they often tell me that caregiving is a gift…

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emotional intelligence 101…

emotional intelligence 101…

My mom was in town last week. You may remember from previous posts that my mom was diagnosed with a degenerative brain disease in October, 2015, and comes to stay with me every month to participate in an ongoing clinical trial for a new experimental drug. It’s astonishing to think that we have been doing this for well over a year now. When we first began the clinical trial, she could walk on her own, although very unstable. She could read,…

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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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suicide survey…

suicide survey…

Standing Up to POTS (an organization for which I serve on the Board) is partnering with counselors and suicide prevention specialists to tackle the issue of suicide risk in chronically ill populations.  We need patients with invisible illnesses (any, not just POTS) to complete a survey so we can develop better screening tools to identify the risk of suicide in patients with chronic illnesses. The survey is completely anonymous and will not collect any personal information from you. At this…

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stop comparing every illness to cancer…

stop comparing every illness to cancer…

I expect this post will be wildly unpopular, but I am going to say it anyway. Stop comparing every illness to cancer. The day I received my chronic illness diagnosis still ranks among the worst days of my life. It solidified my worst fear during the years of testing and misdiagnoses and uncertainty: that my life would never be the same. Friends and family rushed in with loving expressions and compassionate words. And, inevitably, as every newly diagnosed chronic illness…

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administrative updates…

administrative updates…

Hi friends, I’d like to tell you that the title for this post is some deep metaphor for the wisdom I’m about to bestow, but it’s actually very literal. I made some updates to this blog, and they were administrative in nature. How boooooooring. Formerly, my blog was hosted by WordPress.com, which allows only minor changes. So, I decided to upgrade and self-host a WordPress.org blog. If you read this through an email, please navigate on over to www.dysautonomiac.com and let…

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