Friday, November 14, 2008

Our Lyme Hell, Still In Pain After 5 Weeks Of Antibiotics

So my daughter is still in chronic pain after almost 5 weeks of antibiotics. I took great pleasure in filling out the form from our ped's office to transfer our files to our new pediatrician. I pressed down hard and checked "entire contents." Yeah, fuckers! Too bad I don't have extra time right now to file a complaint to the state for their mishandling, or do the high road thing and prepare a Lyme care package that includes the latest info on chronic Lyme and Lyme's broader symptoms. I have visions in my head of beautifully wrapped books with extravagant bows to be delivered to each and every one of those "doctors" in that practice.

I got a call from "Nancy", the office manager that I have NO RELATIONSHIP with whatsoever. The obligatory "why are you switching" call. They don't give a shit, ped A will be relieved that he will no longer be getting articles shoved in his pocket and biannual arguments. I'm done. So of course I'm not going to call, mainly because how can I possibly condense my problems into a simple list? And they won't change, so why bother.

But I move on. I have moved from ped A to ped B. I have a very good Lyme specialist. I have an incredible nutritionist and homeopath. I push about 30 different substances into my child's 60lb body each day while she aches from head to toe. Her antibiotics make her nauseous each time she takes them, which is 3 times a day. For 2 months she's had the following symptoms:

pulsating headache that wraps around like a band
sore neck
rib pain
chest pain
stomach ache (worse with food)
sore back (can't even touch)
arm and leg pain
sore shins
wrist, ankle, and heel pain (so bad she has to sit in the shower because the tile hurts her feet)
hip pain
dizzyness after any sugar (Halloween night was "fun".

How does she do it? I don't know. Her personality has changed, it's wearing on all of us because she is miserable. Leo gets his share of her irritability and sensitivity. I talk to him every day about it, validating him, and seeing if he needs to talk. He does "get it", he's amazing. But still unfair. And they share a room!

I have the "right" blood work done that tests positive for Lyme along with a normal CBC panel. I have my cancer doc friends that reassure it's not a cancer based on her symptoms and her testing. I now have to sit and wait for her to get better. No one knows when, there isn't a handy chart that will indicate when this hell will be over.

I wish I could just walk away from health problems and go back to advertising without a care in the world. I wish I could just buy food because, hey, it looks yummy. I wonder if I should take up smoking.

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