Browsed by
Category: Chronic Illness

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…

Read More Read More

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…

Read More Read More

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,…

Read More Read More

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…

Read More Read More

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…

Read More Read More

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…

Read More Read More

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…

Read More Read More

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…

Read More Read More

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…

Read More Read More

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…

Read More Read More