You know, it's not always horrid here, at home. At this moment, my son is singing and showering. My daughter is pounding away on her drums (and she's good.)
But just five minutes ago, it wasn't so good. And five minutes from now, it might not be good anymore. And five minutes before bedtime, I can tell you it won't be good. Two nights ago, we had drama trauma.
What's good is that I can listen to an entire monologue of "You don't love me, I wish you weren't my mother, I'm going to run away" and not flinch.
Been there, done that. I smile and tell her to just take the dog so she has a fluffy little terrier to bite any would-be kidnappers.
Nah--that stuff doesn't hurt my feelings and it's relatively easy to not react. I know it's not my kid who is saying those monstrous things. It's the disease. I am sad that the disease is so powerful, though.
The latest OCD that my son hid for so long? It's not him. It's the disease. And son, we NEED to NOT have secrets. Symptoms mean an active disease. Active disease means medical treatment is necessary. Those thoughts of yours are OCD, not you.
Tomorrow he goes for IVIG. One of his doctors had asked me to note whether he started to decline around the 8 week mark (because we extended this IVIG to about 13 weeks.) Well, the OCD has been there longer than that so it's hard to tell. But as to my kid needing IVIG--that just became much clearer. Yes, yes, yes. But I think Bartonella is playing a stronger hand now. Puberty reeks.
How much do hormones play in Lyme Disease? A heckuva lot. This past week, I was much more symptomatic than usual. All I want to do is lean on my hand, put my head on the table, curl up in bed. And my kids are at that age where the hormones are kicking in. In fact, it's almost a competition between them. Who has more leg hair?
On the positive side (and I'm starting to get sick of myself saying that, always, always,) when my daughter had a melt-down and took off in Target today, my son looked at me and asked, "Should I go after her?" He's a PANDAS pro by now.
She's upset because he gets upset (and takes it out on her.) Then he snaps back and is able to see himself as he was a couple of years ago by looking at his little sister.
Damn! What could Shakespeare have done with this material?
Is my daughter as sick as my son was? I don't think so. I believe I've blocked a lot out. I haven't even written the worst of it in my blogs. She's having lots of trouble processing this year. She's having trouble learning and she feels stupid. Been there too, and now my son is bringing home grades in the 90s. I see many of the same symptoms in her that I saw in my son, plus air hunger from the Babesia. I just haven't quite figured out how to get her back. Holding my son calmed him. As much as my daughter is cuddly, holding her doesn't help.
This too will pass...maybe? In two years? Less? More?
I'm tired. I have my own chronic fatigue, my own vertigo, my own memory lapses and my own struggles to at least get the laundry done at home (and teach my 22 students every day.)
I hate the fact that my kids are sick.
Tomorrow, my son has his IVIG. My husband will take him. I work all day. We'll come home, everyone tired. Who makes dinner? If this were a cancer treatment, friends might bring over food. Well, maybe not if the cancer treatments had been going on for years and years. And really, who wants to worry about bringing a dish that is not only Kosher but dairy-free, peanut-free and gluten/yeast-free? Only my mother-in-law will tackle that one, but she lives an hour and a half away. Hmmm. We can't even order out. And on top of that, both kids have become very picky. Food sensations, you know?
Sorry for the down blog, but this is all too real. I'm tired of going to sleep with tears in my eyes. I'm tired. Oh, so tired.
But on the positive side...and there's always a positive side, right?
I'm very excited about the PANDAS/PANS conference in Norwalk, CT on November 15. Four top doctors are speaking. My husband designed the flyers.
My husband cooked (gluten-free) spaghetti and meatballs with his own sauce with herbs from our garden for dinner tonight.
My son says he wants to be a neuro-immunologist someday, since he's been a patient to so many doctors (and he'd like to be on the other side.) He also wants to make good money. We'll see.
I have one of the sweetest classes I've ever taught (and their parents are sweet also.)
I have wonderful friends.
I have a partner in this--my husband. We've become Lyme and PANS warriors together.
And, if I can help at least one person because of my own personal journey, than perhaps I've helped save a life. And this turmoil and trauma is not in vain.
But it still reeks.