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: PANS
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”
I Run 5 Miles, but I Can’t Walk 50 Feet
Suddenly losing the ability to walk at nineteen years old is terrifying and heartbreaking. I never thought it would happen to me, but this summer, it did. In a matter of twenty-four hours, I became unable to walk across a room without falling down multiple times.
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.
Steroids Turned Me into a 12-Year-Old Boy
It’s been more than three months since I’ve been on Prednisone. I hate the steroid, but I love it, too, because I know it’s the reason I’m able to live a somewhat normal life right now. I would never want to take Prednisone unless I absolutely had to, though, because the side effects are pretty awful: weight gain, increased appetite, insomnia, moon face, acne, decreased bone density, increased susceptibility to infections, etc… But I have to take it to keep the inflammation down and help stop the autoantibodies from attacking my brain’s basal ganglia.
Every time I’ve tried to taper off the steroid since starting it in July, the depression, anxiety, OCD, tics, movement problems, and inability to eat have come back. Continue reading “Steroids Turned Me into a 12-Year-Old Boy”
3 Months Post-IVIG: A Wild Ride
Today is the three month anniversary of my IVIG treatment. It’s hard to believe it’s already been that long, but at the same time, it seems like an eternity ago because the last three months have been such a wild and difficult ride.
So far, the main improvement I’ve seen is with the chorea and tics. I’m starting to have a lot of days where they’re barely noticeable. The chorea is usually just a slight arm or leg jerk here or there—I don’t look like I’m constantly dancing anymore. I can actually sit still!
What I Have to Believe…
In the last two years, nothing has gone as planned. I was supposed to go off to college and start my life again. I was supposed to leave behind the pain of the OCD I had seemingly conquered last year just before my freshman year. I was supposed to move away to let my career take off. But instead, I’m sitting here about to take another nap because no matter what I do, I can’t keep my eyes open. I never could’ve imagined that this is where I would be right now…
If I have to pick one thing that is the worst part about having PANDAS, I think it’s the fact that it makes me feel like I’m not myself anymore. I feel like I’m only a shadow of who I used to be—even of who I was a year ago. Continue reading “What I Have to Believe…”
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…