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.
Lately, I’ve been feeling like that about my fight with PANS and about my health in general, because I just got some troubling news: I tested positive for Babesia, exposure to Tickborne Relapsing Fever, and possibly Lyme Disease. Just when I thought I was back on track, I’ve now found out that I could still face a long road to healing.
And of course, all of this is on top of my ongoing challenges with PANS, anorexia, and an immune-deficiency. I’m back at a healthy weight at this point, but some days, I’m still so incredibly tormented by the anorexia thoughts that I’ve considered spending my winter break in residential treatment. And my Common Variable Immune Deficiency (CVID) means monthly low-dose IVIG treatments, which means I spend a day at an infusion center each month and then feel exhausted for almost a week afterward.
Some days, I don’t think it’s ever going to be possible for me to win the “PANDAS Games.” I know I’ll survive, but will there ever really be a time when I’m well without taking antibiotics and antidepressants, getting monthly infusions, and constantly worrying about avoiding Strep?
For those of you who don’t know the story of the The Hunger Games, in the second movie, the people who won the Games in the past were forced to compete in them yet again, after they’d been crowned as victors and promised a lifetime of security and riches. I’m no different from those people. I beat PANS a year ago and went on to live my life and do some pretty amazing things, but then it came back this summer, and I’ve been forced to compete in the PANDAS Games all over again. Can I really win this time around, too?
Fortunately, my doctor, who’s one of the leading experts in PANS, has told me since that first day when I limped into her office two years ago that I’ll get totally better someday and be able to put all of this behind me. She’s repeatedly said that, with proper treatment, no one has to be stuck with PANS forever.
I certainly have my moments of doubt, but it’s true that, even now, I’m well enough to be making straight-A’s in part-time college, holding a (very) part-time job, and socializing more than ever. Oh, and I just ran eight miles this weekend, while in July, my POTS basically made me pass out from just standing up. Even if it seems like it’s impossible to win these games, the fact is that I’m well on my way to being crowned a victor, yet again.
Haymitch might have been right about the Hunger Games, but he’s wrong about The PANDAS Games: someday, somehow, I’m going to be a winner for good.
Hello,
My son also suffers from PANDAS. Who is your physician.
Thank you
Angelica
Hi Angelica, I sent you an email. Thanks for stopping by, and I hope your son gets better soon!
I’m a new reader and love your blog. I have POTS and autoimmune issues as well, although my autoimmune issues are different than yours.
Hi Jackie, thanks for reading my blog! I’m glad you’re enjoying it so much. I’ve read and enjoyed quite a bit of yours as well, especially when I was first diagnosed with POTS. Very helpful 🙂
Hi, your post popped up on my feed. Sorry to hear about your various illnesses. It’s worth mentioning that Lyme disease can cause so many symptoms and be misdiagnosed as a variety of other illnesses – if you’ve not already started your research then get going asap! It took 9 years to diagnose me (in the UK) but the light at the end of the tunnel is that once you treat Lyme it’s likely your other illness will subside. Good luck!
Hi Rachel, thank you commenting and for sharing your story! I’m sorry it took so many years for you to be diagnosed, but I hope you are doing much better now. I’m going to be seeing a Lyme specialist very soon, and I have my fingers crossed that this will be the missing piece in the puzzle. Thanks again!
Sorry, this is the correct number for infusion place 866-869-7307, ask for Joy or Angela.
You are a fantastic writer & an inspiration to all! My son has home infusions thru American Outcomes Management. 1-800-556-4246. We have heard from multiple doctors that the majority outgrow Pandas/Pans & eventually live normal lives. If you don’t mind, can you share who your doctor is? Stay strong. I will pray for you. You should write a book!
Hi Melanie, thanks so much for the information about home infusions. So far, I’ve been going to an infusion center, but if my insurance allows it, it certainly would be nice to do them at home.
It’s great to hear again that most people outgrow this and go onto have normal lives. That’s what my doctor says, but it can be hard to believe it sometimes.
Thanks again for the prayers and kind words!
P.S. I’m a big fan of your book! It’s a much needed resource for all the kids and families out there struggling to understand what is happening to them. I’m planning to publish a memoir in the next couple years, so I appreciate the encouragement.
Can’t wait to read it, tissues will be ready. Are you comfortable sharing your doctor’s name? If not, no problem. Thanks for your kind words on the book! Hang in there!!
Yes, I’m sending you an email! 🙂