I wish I could at least say we are going nowhere fast, but this is the most slow and painful nowhere I've ever experienced.
Ten years. Ten years, and we are still here. Maybe worse.
Misdiagnosed for a decade. Check.
Dozens of doctors and specialists. Check.
Hundreds of tests and labs. Check.
Expensive supplements that could put us out of house and home. Check.
IVIG treatment, the big one (or so I thought). Check.
A chronically ill and depressed child who continues to decline. Check.
Nowhere... slowly. Check.
We are always in the waiting. Waiting for the next doctor to call. Waiting for the latest lab work to come back. Every time thinking we will get somewhere, but the maddening reality of this illness is that we don't move an inch. It's like we are running in place.
I've gotten to the point where I don't care how far we have to go, we just need to start moving. I was recently looking all across the country for any doctor that could somehow help. I've looked at Arizona, New York, Washington DC, Florida, Ohio, North Carolina, and maybe more. We were able to wrangle an appointment with a doc relatively nearby that seems to think he can help. It will be a long day of driving 4 1/2 hours there and back just to see if that's at all true. But I don't care. It's pretty standard in our house these days.
My life has turned into one big waiting game. I was telling a friend that I actually get excited to see what the next test results might bring. Man, that's sad. But I guess it makes sense. I'm constantly waiting for a piece of the puzzle that will do it. The elusive piece that I've been missing all these years. And if you're wondering, I'm currently waiting on a lab that we shelled out $520 for to see if he has Lyme for sure, since the last 3 tests weren't good enough I guess. Sigh.
While I'm at it, I might as well spread the word about PANDAS/PANS. I keep thinking that I don't want this to happen to other families, while I secretly harbor the fear that it's already too late for us. I'm so fearful of the damage this has already done. The culmination of that fear was his recent MRI that showed abnormal results and lesions in his frontal lobe, likely from infections that have been lurking in his body all these years. I was probably shoving some unnecessary, $100 supplement down his throat while that was happening.
I'm tired. He's tired. I'm running out of cards to play here.
I will say that God planted a seed months ago that I need to be putting on His armor. The battle is not of flesh and blood, but of the Spirit. He's been hinting that for some time now, but has been too nice to just whack me on the back of the head like He probably should. So I'm trying to armor up; use what He's given me to fight. It's my humanness that stands in the way. My fear.
So I hope you will help us do just that, because we still have a long way to go and this battle is hopefully going... somewhere.
