It’s been over four months since I had IVIG—and six months since the abrupt onset of my tics and other movement problems. On the whole, I’d say I’m much better. I’ve even started tapering off the steroids. The way I put it with my family is that I finally feel like a person again. I’m almost back to where I was before I started flaring two years ago—with the addition of tics, some walking issues, and hypersomnia. It’s not all forward progress, though. It’s really more of a two-steps-forward-one-step back process.
Tag: Treatment
Getting Over the Trauma of OCD
I usually say I’m mostly free from my OCD. Indeed, I no longer have to cancel out every intrusive thought that enters my mind, and I don’t have to double-check everything I say or write for a blasphemous double-meaning. Without hesitation, I can read passages of Scripture that once sent me into a full-blown panic attack. I’ve truly come a long way, but lately, I’ve been realizing that my fight isn’t over.
What I’ve been through as a result of Scrupulosity OCD was extremely traumatic. Do you know what it was like, as a devout Christian, to believe that you would be forever separated from the God you loved with your whole heart? To me, this was the worst thing that could have happened, and as far as I knew, it had happened.
The pain was real, even though the reality was totally different. The truth is, I just had a disease that manifested itself as extreme OCD that happened to take the form of religious obsessions and compulsions. No matter the content, all OCD is essentially the same. It wasn’t a “spiritual” issue any more than it was when I caught mono last year (and subsequently descended into the worst flare of my life). Continue reading “Getting Over the Trauma of OCD”
What I Wish I’d Told My Parents
This time of the year is always difficult for me. Seven years ago at this time, I had the worst PANDAS flare of my life and descended into a terrifying world of OCD, odd behavior, insomnia, and depression. For a time, my symptoms completely tore apart my family.
I’ll never forget when I first made my parents cry. I was twelve years old, and we didn’t even know I had OCD, let alone PANS. Had we known, things never would have gotten so bad. My parents were almost as terrified as I was at the change they had seen in me.
I Had OCD for 6 Years… And Didn’t Know
This week has been OCD Awareness week. Up to this point, I haven’t discussed my OCD very much, but I think it’s time to change that. An overnight onset of OCD is the hallmark symptom of PANDAS/PANS—which I had almost eight years ago.
For six years, I concealed from my parents and psychologists the torturous obsessions that ran through my mind because I was so afraid of and ashamed of them. Continue reading “I Had OCD for 6 Years… And Didn’t Know”
Signs of Hope
For the first time in four months, one night, suddenly, I realized my choreiform movements were gone. When I woke up the next morning, my body felt completely different. That night, I felt a tingling session in my head and legs, as if my brain were healing itself. The next morning, I had a sense of the disease departing from me, and people were even telling me that my “energy” was different. For the first time in several months, I was enjoying my life again.
Since those wonderful two days last week, I have had some mentally rough days, although the chorea and tics continue to be quite mild. Could the IVIG actually be starting to work? Continue reading “Signs of Hope”
Still Falling… And Getting Back Up
So I know it’s been awhile since the last post, but it’s been for good and bad reasons.
I had two weeks where I almost forgot I had PANDAS sometimes—days where I could get done almost everything I wanted to get done. I was walking normally and having a lot less chorea. My mind was mostly clear, and my concentration was good. I even had an almost normal amount of energy. So far, I’ve been able to make all A’s and a B+ in my classes. Even so, I haven’t had time for a social life. All I’ve been able to do is do homework and rest. On the outside, it was looking like I was doing pretty well. But then I started having more bad days…
Another Flare…
Last week, I had my worst flare since everything really went downhill in June. I’m happy to say that the flare is gone now (thanks to more Prednisone and maybe the IVIG), but now that I’m coherent again, I thought I’d share what my PANDAS flares can look like. Please bear in mind that every person reacts differently to this disease, though.