Catching UP

Looks like it's been 9 days since I have posted...give her an inch and she'll take a mile. There are nights I walk by my computer and start to post and decide not to. There are reasons not to blog, most of them political, some of them emotional. What I've learned while channeling my way through what seems to be the Great Dismal Swamp is that some days only 30% of your time might be spent truly focusing on the illness and treating your child, while the rest of the time is spent calling docs, insurance managers, and simply dodging bullets.

I have spent the last 9 days walking a tight rope of research, fear and politics. I have come to appreciate docs more. Whether or not I agree with their opinions at the time, I have to appreciate what they must go through in the true interest of good health. With all the paperwork, malpractice and emotional parents (self included), it's a wonder they can actually treat patients. I can see where many parents would give up and I have been at that crossroad.

If I thought toxic mold illness was difficult to navigate, it was just a warm up for the wonderful world of Lyme. I hesitate to say too much about the topic because opinions flare on this one. It's a misunderstood bacteria with a gaggle of co-infections that can take your life. I have had one goal for the last two months and it has been to have Coleman properly tested for Lyme. This does not include a western blot, which tests for antibodies to the bacteria, but actually crushing the cell and finding the spirochetes of Lyme. Having that goal puts you center stage in the politics of Lyme.

If we are able to tie up some loose ends on Monday morning, we will draw blood in home during the afternoon and send a few kits to labs in the western part of the country and to Europe. Each time I talk with the Lyme RN we are working with, I am more convinced that she is on point. Today she spoke with our doc and that really helped tie things together. When it all boils down, this testing is the single most important thing in the course of this illness. With a Lyme or co-infection diagnosis we head in one specific direction of treatment that will be involved. If he tests negative, we will head in a polar opposite direction and quite frankly, it's the one I fear the most.

Fear, I'm working on fearing it less...working on trusting more - as though it were ours - having confidence and staying in the race. On the worst day I can remember in a while recently, the day I thought my world might unravel (and I thought I was out of rope to begin with), I read "don't sit on your hands, stay in the race and stay the course - finish what you started." I knew that day was going to be challenging and when I laid down numb that night, I thought of those words.

Coleman is getting just a bit stronger each day since stopping the antibiotics. We are exercising in bed again and his leg muscles are coming back. He has been blindsided by what has to be the worst cold I have ever seen. It was an import from his brother who is back in full swing and maybe a bit too much. Today Coleman has felt a bit better from it and we're just pushing through it. Even with the cold, I can tell he's a bit more engaged and eating nonstop.

Spen had his first chiropractic adjustment and is taking a good regimen of immune boosters. He and I took a walk tonight - he saw the Tansformers movie today and gave me a blow by blow...male version...which is the story in about 3,000 less words.

I apologize for being off-line. I admit to being consumed by getting the stars to align for this testing and by working a bit here and there. I appreciate all of you for reading and for those of you who comment and drop emails. They help pull me back out of the woodwork and keep my head in the game. Guess that makes you all coaches.

Put me in coach...