Until the Victory Is Mine

I was hoping to never again need my 10 mg Prednisone tablets...
I was hoping to never again need my 10 mg Prednisone tablets…

One of the hardest things about PANDAS is that you never know what it’s going to do next. Just as you’ve finally gotten your life back, it can strike again. Or just as you’re sure the fight is hopeless, things might turn a corner. Sometimes, it seems like there’s no rhyme or reason to its course.

Indeed, it wasn’t too long ago that my doctor said I was in remission. My family and I were stunned at the improvements I was making after my tonsillectomy. But this week, the unthinkable has happened: I am, once again, having a flare.

Over the last month, I’ve been going through more and more days with significant symptoms. I tried to attribute them to the stress of college or to psychological trauma from living with a horrible illness for so long. I didn’t even consider the possibility that my illness was coming back. But this week, I finally fell off the cliff again, and it was impossible to deny.

Not too long ago, I was feeling on top of the world, loving every moment of college. But one day, I woke up with a sore throat and despair, and nothing has been right since.

My depression has been so bad that I cannot make myself get off the floor of my room to even get a cup of water. I cannot do any homework, because as soon as I try (when I can make myself try at all), I burst into tears for no reason. I cannot concentrate on anything I would normally want to work on, either, which makes me feel like a total failure in life. I’ve been experiencing that all-too-familiar feeling of being detached from the world around me, as if I’m separated by an invisible wall. Most telling of all, my legs have begun to seize up on me when I walk, and I’ve lost the fine-motor skills that let me type accurately. And, of course, I’m being tormented with new obsessions and compulsions.

I’m devastated. I was hoping that I could just be done with this blasted disease and get on with my life. Is being able to use my brain too much to ask for? I want nothing more than to live a quiet, productive life and to contribute positive things to society.  And yes, it would be really nice if I could actually be happy. But instead, here I am, crippled by the despair and terror that this disease creates in my brain.

However, as awful and disappointing as it is to be having such debilitating symptoms again, people have pointed out that flaring doesn’t mean I’m heading for a full-blown relapse. It’s just as likely that I’m still healing, and this is only a bump in the road. If I’ve learned anything from my long recovery journey, it’s that healing a brain and an immune system is never a linear process. Sometimes, you make giant leaps forward. Other times, you stumble down a few stairs. But the most important thing is to keep getting back up and fighting with everything you have.

I’ve been on a 5-day burst of a higher dose of Prednisone, and it’s helped tremendously so far. While I’m glad for the relief, it’s been difficult to realize that many of my symptoms can be attributed to inflammation—which means I still have bad antibodies affecting my brain. It’s hard to know that I’m still fighting that familiar foe.

Honestly, I’d be lying if I said I wasn’t worried about what the future holds or wondering if I’ll ever really get 100% better. I’m so sick of battling this disease, but if I’ve made it this far, I can’t possibly give up now.

So here’s to staying in this war a little while longer, until the victory is mine.

12 thoughts on “Until the Victory Is Mine

  1. The gist of what I accidentally lost was that maybe some healing involves symptom to seemingly flare up. I’ve heard that before. About everyone here is learning how it works!

    Also…forgive me if this is a touchy item (any other treatment might be!) …but as I recall you have not had plasmapheresis, right? Maybe that’s going to need a turn too.

    Joy finally sees Neuro at CHOC Wednesday. Tonsillectomy/adenoidectomy scheduled for 11/10. Enormous financial miracles needed for every step! My mom has helped lots but can also “cost” a lot too–and I have wound up feeling as you seem to feel (when if doing better there are known steps that could release known funds! So I’m awfully upset about the brain reactions myself ! (But oh, God, thank God HE IS BIGGER, than even my failures to follow this plan, AMEN!)

    You are healing. It’s all coming out, working through. I panicked this a.m. ($/gas/Internet–which is miraculously usable though ROKU/TV wifi access turned off this a.m.–the reason for the sour colors/feelings earlier!). But am more encouraged now. We are in different situations, but both need to stay locked into holy HOPE.

    With love and cheers for you…along your healing path…grateful you are showing so many how this all can work!

    Hugs to your heart, Jill


    1. Thank you for the kind words and prayers and thoughts. At this point, everything is on the table if I continue to decline, even plasmapheresis. We’re trying to figure out if I might have another infection first, though–possibly mycoplasma, and if so, treating it should help. I think the trend is ultimately toward the positive. This flare is nothing like how bad my flares used to be.

      I’m glad Joy is seeing a doctor and getting treatment. I’m praying for you all and wish you the best of healing!

  2. Have you looked into alternative type medicine? My daughter has been struggling with PANDAS for 3 years. After her last flare-up and several rounds of antibiotics not helping with the OCD behaviors, I found this website: PANDAShopeforhealing.com We have been using an essential oils protocol with her for 8 weeks with good results.

    1. I have tried several types of alternative medicine. I take several high-quality supplements and follow a paleo diet. I’ve also tried acupuncture. Thanks for the tip about essential oils. I’m glad they have helped your daughter. I’m definitely going to look into that for myself.

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