Muck and Mire

Hope is the thing with feathers...
that flies south in the winter
South, way past where the hurricanes begin
South of Hurricane Sandy, south of Miami, into the deep beyond. 

I just butchered Emily's words, but then I feel battered myself and feel like blasting someone other than myself. When will this ordeal ever end? I vow that I'll keep on fighting for the cause--for these children with orphan diseases, for adults who suffer from Lyme. But I want to be able to inspire people because my son got better, darnit. Not because I'm living in the midst of the nightmare, still. Going on 3 years now.

Last night, I spoke with a family member who just had surgery and is having a hard time being laid up for a few weeks. He's feeling his age, and although he did 80 push-ups shortly before the surgery, is having a hard time feeling infirm. He's almost 80 and this is his first bout of something semi-serious. He doesn't like being incapacitated, he detests not being strong and he's nervous about recovery. It's an evil thing to see himself weakened.

Oh heck, I'm the same way. When I was in my 20s and running ("no pain, no gain,") and I finally went to a chiropractor for the pain, I found out I had scoliosis. My first reflection was that I had some invisible deformity. I wasn't perfect. Not that I ever felt perfect. But this made me more imperfect in my own eyes. Muck and mire. I was bogged down by my own self-image.

I don't run anymore. I bicycle. And I haven't biked since that wonderful 52-mile ride I did in August, right after my son's IVIG, right before school began for me. The week is filled up with work and kids. When Saturday rolls around, I'm wiped out--physically and emotionally. Sunday is another workday, with all the sports and religious education. I'm a driver. A cheerleader. A playdate organizer. A laundry worker. A therapist. A cook, sometimes. In other words, a mom. Boy, do I need the exercise. I need the fresh air stripping my mind of the worries that awaken me in the early hours of morning. 

Our son is not doing well. His Lyme is neurological and I won't even list all his symptoms here for fear of embarrassing him in the future when he is better. He has missed many days of school and we are very close to requesting a tutor. The problem with that is that he would require a babysitter as well, so that my husband can work. We need to find out if there are alternative programs around here--the middle school works for healthy children, not for a boy who is suffering as much as my son is. And suffering silently. He doesn't let on when he's feeling low. He'll push himself to run around with friends although his joints hurt. He will pretend to understand what is said in class when his mind has shut down because of the brain fog. But when he gets home, where it's safe to unleash the frustration, the anger, the pent-up rage that overcomes him throughout the day....

I spent Saturday cleaning up. He trashed the upstairs but doesn't remember doing it. And with his arm still healing (cast off, 75% healed, brace and physical therapy for another 4 weeks,) and his body hurting when he bends over, it's just easier to bargain. I'll clean while he takes an epsom salt bath. (And scrub that dirty, old skin off the arm where the cast was.) 

On Friday night, I spoke with a veteran PANDAS parent. I didn't know that anyone could help me. I have read so much, understand so much more. I still don't get many concepts--I have to now become knowledgeable about methylation issues and pyroluria, two concepts people are writing about on the PANDAS and Lyme threads. I'd worked all week, slept little, was feeling stuck in the bog of not getting anywhere. The doctors we see are some of the best in the country but they have thousands of patients and are difficult to reach (having said that, I was able to reach them, and have been in touch with them.) Why the heck isn't my son getting better? Why does it seem he just gets worse?

The parent I spoke with Friday night helped me to see that my son DID improve after each of the three IVIGs he had. The first time, it took 9 criminally horrible weeks (he was suicidal.) After 9 weeks, a kid emerged from the ashes...a kid we hadn't seen in a very long time. It lasted a few weeks, until the next IVIG. The 2nd IVIG cleared up some of the PANDAS symtpoms that were debilitating, but brought back others. Plus, we changed antibiotics and started treating for Lyme. It's hard to do this scientifically. It would take years if we isolated every single variable (plus we'd need a bubble. Couldn't let him out of the house. But perhaps there's mold in the house...the things we worry about.)

The third IVIG, once we got through the migraines and vomiting, did wonders for the OCD. But we started treating the Lyme with antibiotics again and soon, everything was downhill. Now we're heading into our 4th round and perhaps we need to increase the frequency of the IVIG.

There is a debate going on here. Some doctors insist that IVIGs (high-dose) should not be given any less than 12 weeks apart. I've been abiding by this. Other doctors think that some of these kids need more frequent IVIGs. Some kids are going for very frequent but low-dose IVIGs. What to do? Whom to trust? No one really knows!

Yet one thing is for certain: in all this mess, the one thing that has made a difference is the IVIG. So, onward we go. A Tarzan vine hangs above the bog. My feet are pulled down into the quick-sandy bottom, my head is just above water, but I can lift my arms out and grab hold of that vine and hang on for dear life. 

My kids cling to my shoulders as, hand over hand, I drag myself from the muck and the mire.

We will get there. Reality tells me that my son may never again be the perfect little boy he once was, that he might always have to manage these diseases one way or another. But thanks to more publicity, awareness, research, cures will be found. 

If only we didn't have to experiment on my little guy.

Thank you to Tiffani, for patiently pulling me out of the bog this time.