NEPANS is so thrilled that our friend, The Dreaming Panda, has written a guest blog for us. This is our first story written not by the parent but by the person with PANS herself. We of course will continue to share PANS from parents too!
A few years ago, I was poking around twitter looking up PANS/PANDAS posts and came across The Dreaming PANDA. I read one blog entry then went back and read several more. It was the first time I had read something by someone with PANS. I had talked to many kids about their experiences but seeing her struggles and triumphs dealing with PANS while attending college, all written down really inspired me to keep working for people with PANS. Since then she and I have emailed and kept in touch. She is truly an inspiration for everyone. She has had some dark dark day but always keeps fighting, keeps hoping and keeps encouraging others to keep going, to keep Reaching Recovery. Please read her story and share with others. There is hope. And as she says, "Take courage! You’re not alone; you’re stronger than you know, and there’s hope for life after PANS. This disease is not the end of our stories." Thank you for sharing your story with us. It is an honor to have you guest blog for us. - Gabriella True
After eight years of mental illness and symptoms that over a dozen doctors failed to explain, in 2014, I was diagnosed with PANS. My symptoms had come and gone since I developed the disease at age eleven, so I’d successfully completed my first year of college a couple of months before my diagnosis. At nineteen, I’d been sure that my future was full of possibilities, but after what seemed like a mild case of mono, instead, I lost my mind that summer. My whole world shattered.
Out of nowhere one afternoon, I went from being filled with dreams to becoming inexplicably suicidal and terrified at the thought of simply continuing to exist. My entire body was suddenly consumed with wild involuntary movements, and I couldn’t walk. I was delusional and convinced I was going to die, but the indescribable psychiatric torture that had overtaken me was so intense that the delusion was the only thing that gave me peace.
My PANS was so severe that my specialist gave me high-dose IVIG right away, and she said it would start to help in six weeks. I naively assumed that after a few months, I would have my life back, and things would be how they were before. But more than three years later, I’m still fighting.
There are so many things that no one told me about what it takes to beat PANS—far more than I could possibly fit into one post—but for anyone out there beginning the healing process, there are three key pieces of wisdom that I’ve discovered along the way.
It might be a long road, it won't be easy, but you WILL get there.
1) It might be a long road.
My doctor warned that it could be several months for the full effects of my first IVIG to kick in. Indeed, a year and-a-half passed before I truly went into remission, and recovery was so slow that I often felt like I wasn’t making any progress. Nevertheless, after two high-dose IVIG infusions, months of antibiotics and steroids, a tonsillectomy, and some therapy to eliminate what was left of my OCD, I did finally get better in 2015.
I wish I could say that was the end of my journey, but a few months later, I contracted Lyme disease in 2016 and relapsed. My progress has been just as slow this time around, but the long road to healing is more endurable and less discouraging now that I know what to expect.
Recovery isn’t a straight line—there are lots of ups and downs and twists and turns, but if you keep fighting, the road ends in a beautiful return to health
2) It won’t be easy.
The day I was diagnosed, my doctor looked me in the eye and said that nothing would seem hard after I defeated PANS. Truer words were never spoken to me.
Over the last three years, I’ve learned that battling PANS will push your strength and courage to the limit, and then miles beyond. It will break your heart into a million pieces and stomp all over them, but you’ll pick up the battered fragments and go on. It will give you a hundred days when you swear it’s the last you can bear to keep fighting, but you’ll always wake up the next and keep at it, again and again and again.
Nothing could have prepared me for how agonizing and exhausting my journey would be, but PANS proved that I’m stronger and braver than I ever dared to imagine—and that’s why I can keep pressing forward even when I’m sure I can’t.
3) You WILL get there!
During the last few years, I’ve often felt like giving up, because the idea of getting better has seemed impossible. There have been so many setbacks that I still worry, every day that I’ll never be cured for good. Nevertheless, I remember that I did recover in 2015, so I believe that if I beat this disease once, I can do it again. When I think back to how ill I was when I was diagnosed, I find great encouragement in seeing how far I’ve come—and how much farther I know I can keep going.
Although I’m still getting treatment, still struggling, and realizing I have a long way to go until I’m completely better, today, I’m living on my own and finishing my last semester of college—something unimaginable when everything fell apart three years ago. I’ve defied every fear I once had that PANS would irreparably ruin my life, so I truly believe that I will also defy my darkest doubts that I will ever be healthy again.
If you have PANS, you’ll probably be in this for the long haul. There will be a lot of trials along the way, you may feel like quitting, and you may wonder if it’s possible to recover.
Take courage! You’re not alone; you’re stronger than you know, and there’s hope for life after PANS. This disease is not the end of our stories.
To read more about the Dreaming Panda, please read her fantastic and blog. The Dreaming Panda and subscribe to her newest blogs.
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