During one of my many insomniac nights recently, I found myself watching the second Hunger Games movie, Catching Fire. While I knew this wouldn’t exactly soothe me to sleep, there was one quote in particular that’s haunted me continuously:
Haymitch: No one ever wins the Games… There are survivors. There are no winners.
Okay, I’m keeping it shorter this week, because I’m doing so well that I’ve been extremely busy! As I’ve said in the past, the better I’m doing, the less I tend to post and tweet, because I’m away from the blog living 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!
With this latest relapse, I’ve been living as a ghost in my own life.
In a single day, I went from eagerly and excitedly whittling away at homework for my summer classes, to crying at the thought of writing a single paragraph of a paper. I went from enjoying meals and coffees with my friends, to being terrified of any group of people and not eating lunch at all. I went from being praised at school for contributions I made in my department, to wanting absolutely nothing to do with my chosen field.
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.
Last week, I celebrated the one-year mark since my first IVIG. It’s hard to believe it’s already been a year, yet my recovery has seemed to go so much slower than I thought it would.
There are many things that no one ever told me before my first IVIG. I was warned about the fatigue and nausea and headaches afterward and the post-IVIG flare that would come in a few weeks. I was even warned it could take a year before all my symptoms went away, but I was never told what that year might be like.
As my two-month IVIG follow-up approached, I was sure I would have bad news no matter what. It would be bad news if my doctor decided I needed an invasive plasmapheresis treatment. It would be just as bad if she told me we had to “wait and see” if this second IVIG worked, because certain symptoms were still making me miserable.
Well, I didn’t exactly get either piece of news. We made a plan that involved neither option…
This week, I finally hit the post-IVIG flare that we were all dreading. Thanks to a six-day burst of high-dose Prednisone, I’ve come out of it now, but I hope I don’t have to go through that ever again. Unfortunately, I probably will.
Until my most recent IVIG, my flares were getting worse and worse. One night a few weeks ago, I found myself spacing out at the kitchen table for about two hours, unable to make myself get up, because I had too many OCD compulsions. When I realized I’d been doing nothing for two hours and thought about how hard it would be to do anything with the burden of OCD, I just lost it—I spent twenty minutes walking around my apartment screaming and hitting the walls.
I just finished my second, and hopefully last, IVIG treatment!
Recently, I’d been feeling like I’d made no progress with any of my symptoms after my first IVIG. But strangely, it was the process of going back for another IVIG that showed me this was simply untrue.
When I had the first IVIG in August, if I got out of the chair to stand up and stretch my legs, I started doing a wild choreiform movement dance. I couldn’t even look at my doctor to talk to her because I was moving so much. I had to hold onto the IV bag pole to keep from falling down when I tried to walk down the hall to the bathroom.