This week, legislators in Wisconsin have the opportunity to save hundreds of lives and millions of taxpayer dollars: a bill to establish an advisory educational council on PANS/PANDAS is under review. New York is also considering similar policies, and several others including Virginia have successfully implemented them.
Continue reading “Why PANS/PANDAS Awareness Matters: An Open Letter to Legislators”
This weekend, I’ve defied all odds; I’ve done what never should’ve been possible…
I graduated from college, Summa Cum Laude… While in a long-standing battle with PANS and Lyme Disease!
When I was first diagnosed, it felt like my life was a tragedy, and PANS was the ending. I was sure that it had completely ruined me, and pursuing my dreams seemed inconceivable…
Continue reading “I Graduated College with PANS, Lyme, and…. Highest Honors!”
The other day, while filling out forms for an appointment, I froze, as I came upon the medical history section. How could I even begin to explain it all? Moreover, how could I fit everything on two little lines?
Ever since I announced my Lyme diagnosis, I’ve been inundated with questions from readers. While I’m not qualified to give anyone medical advice, I’ll gladly share my own personal experiences. Given the number of messages I’ve received, I figured I should answer the most common questions in a post for all of you, so here you go: Continue reading “In Response to Your Lyme Questions…”
“Mom, I want to die!” I burst into the living room screaming, a look of sheer terror in my eyes.
“Please… Help me!” I plead as I crumple into a heap on the sofa, wailing and yelling at the top of my lungs.
Today, just two weeks after my third IVIG, I’m happy to say I’ve made tremendous progress. I’m no longer afraid of food and calories, so I’ve probably gained back about half of the weight I lost. I’ve gotten strong enough to run (slowly). My POTS symptoms are basically gone, and my parents have told me that there’s life in my eyes again. Oh, and I’ve even finished all of the summer coursework for the classes I had to take incompletes in—including a twelve-page research paper!
So am I better now? Is life perfectly peachy now that I’ve had IVIG? Continue reading “IVIG #3: Third Time’s a Charm”
This week, I reached a turning point in recovering from my eating disorder.
Up until now, although I’ve known how destructive my restricting has been to my body and though part of me wanted to stop, anorexia had so much control over me that I wasn’t completely willing to give it up. I said a few weeks ago that I was going to start treatment for it, but honestly, I was so depressed the day of the appointment that I couldn’t get out of bed and just cancelled it.
With this latest flare, I’ve been struggling with an eating disorder again. Restricted food intake is one of the two major diagnostic criteria for PANS, so my new obsession is nothing unusual. In fact, this is the third time in my life that I’ve faced an eating disorder: the first was when I was nine or ten and the second was in 2014, at nineteen.
Since being diagnosed with PANS, I’ve been on antibiotics for twenty months straight, save for one two-week break. I’ll continue until six months after my last symptom, or at the very least, through my senior year of college.
As I made my way through the halls to my neurologist’s office last May, I stopped in my tracks as I saw a face I recognized. She was receiving IVIG and roaming the halls hooked up to an IV bag pole, accompanied by her mother and a nurse. She was exhausted. There was no light in her eyes. She had a sense of burden and deep sadness about her that penetrated to the depths of her soul.
Once you’ve seen the face of a child with PANDAS, you can never forget it.
