I’m losing interest in answering this question. Today, I sat at the LLMD with my kids kids. The little guy was spinning on the doc’s chair in between attempts to catapult off the chiropractic table, which I think he likely busted. His Bartonella was RAGING. She is a good sport about the Quantum Healer we are working with. The testing gave her information she couldn’t have gotten from her Western Med world. She’s worried about the Bartonella storm. So am I. She thinks the push to treat the Babs in the little guy is making the Bartonella rage. So, we need to start yet another med.
“So, you kids aren’t that sick. They don’t look that sick.” Every week? At least. It might not be a straight out comment or question. It might be more of an inference, an energy, a touch of body language. But I hear it/imagine it/see it every week.
Anyone ever hear the story of how I took the big one in to the Doctor for years asking about the HUGE lymph nodes in his neck? Dozens of doctors. Lots of lymph nodes, NEVER changing. Always ignored. Always brushed off as “helicopter mom”.
How ’bout the story about the little guy? Age 23 months, when he woke up in the am with a dry diaper. By the time we got him to the ER and the shaky chain smoking nurse tried to catheterize him, he was nearly dead. That was a scary one. They put us in an isolation room, summoned the infectious diseases doctors and quizzed us on how our son could have gotten, “Cat Scratch Fever”. They gave him a hit of IV Ceftin and he came back to life. They released him, didn’t bother to do the test for Bartonella (Cat Scratch Fever) and three years later, with no other treatment, he tested positive on that test they never bothered with. The little bit of IV Ceftin took the fear of death away, but buried the infection into his nervous system. Yeah. Thanks for that.
Let’s go over this for the naysayers. Lyme Disease can kill you. Bartonella is nearly impossible to treat. It is a serious crapshoot. No protocol. Babesia? Fucking nightmare.
Yep. Crabby today. I had my first good cry since my diagnosis. I have lovely Bartonella tears often. Manic tears, random tears. I’ve gotten them on Minocycline, on Zithromax and on several herbs. They are pretty commonplace. I get them when I watch touching movies like, “Fred Claus” (no razzing me). But today, I had my first, “Oh my God. . my kids are really sick, cry.” The kind my mother used to have behind the shower curtain. The kind that makes my kids say, “Mom were you crying?” Bartonella tears are crazy tears, frightening tears, tears my kids are de-sensitized to. These were grief tears. Today I hit places in my heart that I didn’t want to touch.
So, to say it again: My kids are sick. They can play and jump and laugh and fight. They can do Kuk Sool Won, Circus, Boychoir and go to school. And some days, they can’t do much of anything. The little guy comes out of 2 1/2 hours of pre-school ready to kill one of us. Anxiety about missing life nearly destroys the big one. Their immune system function is like that of a kids with AIDS. Not the whole immune system, but the Natural Killer Function. The little guy has tonsils that are the size of walnuts on steroids. White spots reside there. And no, they aren’t those little tonsil stones. Best as we can tell they are unmoving, unrelenting markers of Bartonella. Lovely.
When the kids get bad, the little guy gets angry and aggressive and hard to deal with. The big guy gets extremely moody, anxious and/or completely flattened.
I have tried not to become my illness, but let’s face it. Right now, in truth, it is trying to swallow us whole. One day, the little guy drew a picture of the snake that swallowed our family. That kid has amazing insight. I feel as if this disease has swallowed us whole.
I have two ill children. I watch people bake cakes and go sledding and grocery shop. I can do one thing a day, and that takes all I’ve got. Sure, everybody has their “thing”, everyone has their life challenge, but today, I’m just really sad that mine has to involve these sweet boys.
Adrenal fatigue on the big one. Big. Stress doesn’t help. Pressure from school, not so helpful. Boychoir. Fundraising. Piano lessons. Homework. None of that starts to matter when your kids blood pressure is on the floor. “He can’t be getting enough blood to the brain with that pressure,” the doctor kindly says. And I just cry.
It isn’t that I don’t want to be here. This is where I am. This is our life. This is our truth. This is the challenge we were given to help us to become more fully who we are. But one day I’d like to have the energy to do something trivial. Something meaningless. Something light and full of fluff. I’d like to take my kids sledding. Sleep a night without worrying about whether or not my son will stop breathing because those tonsils block his breath.
So, just in case you haven’t figured it out yet, I’ll answer the question again. My kids are sick. Their illness may be invisible to you but the clinical psychologist, the neuropsych docs, the pediatricians, the Lyme Doctors, the Ear, Nose and Throat specialists? None of them are ignoring me anymore. They see it now. I am no longer the helicopter mom, no longer the mom who has Munchausen by Proxy. I am the mama bear. Fighting for her cubs.
So, I dry my tears. Pick up my tired body and fight. I won’t give up. Not now. Not when the fight has just begun.