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.
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…
On Thursday morning, I woke up and immediately knew something was very wrong. My whole body ached. I had an awful headache. I was dizzy. I was too nauseous to even think about food or water. It was that familiar set of symptoms that meant one thing: I was in for a terrible Lyme herx.
“It’s Lyme disease.”
They were three words that shattered all of my expectations for recovery from PANS… Three words that I still struggle to accept… Three words that are going to change my life…
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”
“You’re going to hate me when I tell you this,” my cardiologist said this week.
I braced myself to be told my heart was damaged from Rheumatic Fever—or to be told my symptoms were all in my head, as so many doctors had said over the years…
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.