Today, I’m thrilled to have a guest blogger, Olivia Cyr. She is seventeen and lives with a few chronic conditions including dysautonomia, OCD, and anxiety. Olivia has been featured on The Mighty, and her perspective as a teenager dealing with these issues is important.
Being a teenager is hard. I don’t think that many would dispute that fact. Between boy/girl drama, friendship struggles, school, teachers, homework, a job for some, and more, teens often don’t get the credit they deserve for juggling all they have.
Continue reading “Guest Blog: The Challenges of Being a Teenager with a Chronic Illness, by Olivia Cyr” →
Before I’d even opened my eyes, I knew something was terribly wrong. Every muscle in my body hurt. I was drenched in sweat. My heart was racing. I had an 101º fever.
As I lay there trying to will myself out of bed, my heart-monitor watch went off, warning of a high heart rate. I didn’t think much of it because I had a fever, so of course my heart would be above 100.
But then it kept going off. Again. And again.
Not having it, I rolled over and slapped on my blood pressure cuff. My pulse was 166. Crap crap crap! This was really happening again.
Continue reading “My Disastrous Symptom Flare & How I Plan to Get Out of It” →
Today was Graduation Day for my master’s degree…
But I’m not graduating.
And I don’t mean that I’m not getting an in-person ceremony, the same as the rest of the class of 2020. I mean that I’m not graduating because my illness forced me to leave grad school halfway through a degree.
For years, I had planned on going to grad school, getting a PhD, and then becoming a professor. I liked school and liked the tutoring job I had in college, so I thought teaching and researching at a university was what I wanted. Continue reading “Remember M.E.: Why I’m Missing Today” →
“Ups and downs are better than straight down.”
The other day, I found this cryptic message scrawled on a sticky note inside my desk. I had completely forgotten that this used to be one of my favorite sayings in the years when I was still fighting through the brain inflammation from PANS. But now, it’s taken on a whole other level of meaning with my new challenges…
I remember clearly the day I was diagnosed with PANS, and my neurologist said I needed IVIG treatment urgently. It would be an infusion of antibodies from thousands of human donors in an attempt to stop my own autoimmune antibodies from attacking my brain.
Continue reading “Why I’m Getting Better Even When I Think I’m Not” →
The other night, a horrifying realization jolted me awake: I haven’t rode my bike in over two years.
Suddenly, the memories came rushing back, and I imagined myself biking like I once did. I remembered how, in college, I would bike to errands and class. I remembered zipping around town with the wind in my hair. I remembered the long rides in the bike lanes and on the greenway, and my riding buddy’s incredulousness when I’d already run ten miles that morning and still was hard to catch.
Continue reading “When Good Memories Torment You” →
Dear 2015 me,
I know you feel like a stranger in your own life right now while you’re the sickest you’ve ever been with PANS. I know you’re scared, lonely, and unsure if there will ever be anything more to your life than this illness that attacked your brain and kidnapped you from your own body. I know you feel invisible because of all the hours you’re trapped in your room and all the days when you’re trapped in a mind you no longer recognize. You feel unseen because no one knows how much it takes for you to accomplish what others take for granted.
Continue reading “Dear Sick, Scared 2015 Me… A Letter to Someone Whose Illness Uprooted Their Life” →
Last I wrote, I had resolved to do whatever it took to stay in the Partial Hospitalization program. And guess what happened? I left the program. 😬
Part of it is that my insurance only approved a certain number of days. I could have fought for more. However, the more I thought about the whole program, the more I began to realize why it was time to go home.
Continue reading “Home from Partial Hospitalization” →
Today, I’m so excited to introduce all of you to author Madeline Dyer, who has just published a gripping collection of poems, Captive, on her journey through Autoimmune Basal Ganglia Encephalitis, aka PANS.
“I just want to get better
and see the stars
and believe in hope again.”
As someone who has lived with this condition myself for over half my life, I can say that I felt this opening poem, and the pages that follow, on a deep level. PANS has a way of making the sufferer feel completely hopeless, and this sentiment is one that just about all of us have felt while in the depths of the condition. Admittedly, I’m not a poet and don’t read much poetry, but I was able to get into this book.
Continue reading “Special Guest: Interview with Author and PANS Survivor Madeline Dyer” →
After finishing an entire week in a Partial Hospitalization Program for eating disorders, I am both more optimistic and more pessimistic about moving forward. As expected, I had a big ME/CFS crash on Saturday, the day after the week of PHP finishes. It’s pushing my body past its limit. I’m willing to put up with the worsened symptoms as long as I’m not causing long-term harm, but it’s a fine line. Continue reading “PHP Day 7: “It’s Rehab for Your GI System.”” →
Today makes my third day of Partial Hospitalization, and I already know I need to stay more than a week—and I’m mostly okay with that, but not sure whether my body will allow it.
Looking back at the last few months, I’m starting to see that, as usual, my psychiatrist has been right in saying I need to be here. As it turns out, it doesn’t much matter why I’ve lost this much weight below my healthy place because I’ve ended up with the same physiological consequences and even some of the distorted thinking of anyone with an eating disorder… My hair was starting to fall out. Continue reading “PHP Day 3: “You Didn’t Fail.”” →