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Category: Conditions and Diseases

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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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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conference videos…

conference videos…

Hi friends! In my previous post about the POTS/MCAD/EDS conference I went to in December, I promised I would let you know as soon as the recordings of the speakers were available. The videos are now up, organized by speaker and topic, at the Children’s Hospital of Orange County website here. Feel free to share that link with others who might be interested. If you watch any of the presentations, I’d be interested in hearing what you think! Come back…

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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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further down the rabbit hole…

further down the rabbit hole…

It has been an interesting few weeks – the Cubs finally won the World Series, Donald Trump will be President, marijuana is now legal in California, and I have two “new diagnoses”, although I use those terms loosely, as one is not really new, and one is not really a diagnosis. For the one that is not actually a diagnosis”: My doctor’s assumption of being peri-menopausal was correct. What. the. f*ck. I’m in my mid (okay, late) 30’s, so this…

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POTS mini conference…

POTS mini conference…

Great news! If any of you are located near southern California, I highly recommend you check this out! CHOC (Children’s Hospital of Orange County) is offering a great POTS conference on December 3-4, 2016 in Orange, California. The conference is $25.00 per person for patients/family members. There is also a conference for medical professionals that you can share with your doctor. The schedule includes speeches from many of the POTS superstars as well as a breakout session for teens so…

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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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