Prepping the Pills, Brain on Fire and Other "Fun" Stuff

Like Monday, Tuesday, Wednesday underwear, we have daily pill boxes, all divided into morning, noon, evening and bedtime. And yes, these do make my life easier, since I have to drop between 4-6 pills (including 2 different antibiotics) and supplements into each morning and evening time slot. 

Probiotics are a different matter, since they have to be refrigerated. The noon slot, therefore, is deceptively empty.

The Valtrex pills are covered with blue varnish and need to be washed. OMG. It's like a fingerpainting nightmare--the blue running off the 14 whale-sized pills, dripping into the white sink, onto my fingers, staining the paper towel.

The Enhansa leaves a slight orange residue from the turmeric.

And I just remembered that I forgot the allergy medicine and have to go back downstairs and open up each and every box to drop in yet one more pill.

But, oh how I love the click click click when I close each little window into the world of pills.

I should have every pill he takes written down. I have had everything written down in the past, but it changes so frequently that I haven't kept up. I keep every pill that my son must have in my...mind.

Ouch. If I ever get sick, if I ever get amnesia, if I ever lose my mind (cut out the jokes!) we're in trouble.

But then again, if ever something were to happen to me--or my husband--not to sound too narcissistic, it would be devastating to my children. 

Who would take care of my sick child? It would be easy enough to find someone to love and cherish my healthy child, although she and I are super-close and she would need/miss me beyond anything.

But really, who would take care of a child with PANDAS? One who wants to be bar Mitzvahed next year (but hasn't started studying yet,) one who dreams of being a marine biologist in Hawaii, but cannot read a book right now, one who has a wonderful singing voice, but has lost his passion for singing. A child who, at times, is downright psychotic, due to this crazy-making autoimmune disease. A child who needs a lot of holding, even in his sleep.

I just finished reading Brain on Fire: My Month of Madness by Susannah Cahalan. 

I took the book out of the library. Twice.

The first time, it sat there by my bed, meditating. Considering me. Was I worthy enough to open the pages of the book? It sighed in discontent. And then was stuffed into a bag with a bunch of other books and CDs and thrown back into the library return slot.

I coudn't bare to read it. Too much sadness between those pages.

But I tried again and the book opened up to me, pouring out its story of...hope and survival. And scientific discoveries and heroic doctors who beat the odds. From a writer with a magnificent sense of word-style and irony.

Although Ms. Cahalan's autoimmune disease was different, although her symptoms were not the same, there were so many similarities between her experience and that of our son, that I had to read every page, every word. Reading this story gives insight into the minds of our little guys and girls who cannot yet articulate their experiences. Reading this story is like staring through the window into a hospital room, being an invisible eavesdropper. 

I searched the internet for pictures of Susannah Cahalan. What I really wanted to also see were pictures of her parents, those patient heroes who scooped her up and brought her home, literally and figuratively. What I really want is to meet her parents and talk with them.

Her boyfriend is, without doubt, a find. But her parents interested me because as I read her book, they did everything that my son's dad and I would have done. No matter that she was 24, then 25. They helped to save her, despite their shock and grief. I cried for them as well.

As a mother of an almost-12 year old, I don't have to worry about him drinking. I have total control over whether he takes his meds--almost--my husband and I will take away his prized possessions if he doesn't. Our son convinced us that he should be given a reward for taking all those distasteful medications (Mepron, PharaNAC,) all those pills several times a day, all those needles, from IVIG to tubes of blood drawn from him. He was right. We got him the Google Chrome, a small, relatively inexpensive laptop. He can now google, write, get on Facebook, play games. And we can now hold it over him when he complains about the meds (sorry, little guy. Daddy and I do what we must do.)

Meanwhile, I worry if these medicines are helping or hurting him. We are finally working with doctors who specialize in PANDAS and Lyme and I trust them...more. But there are no sure-fire cures for these diseases yet. It's all trial-and-error. 

Poor kid. It's only a matter of time before he rebels more and we need to fix him before he does. Right now, he is so responsible that he won't go to any websites that are inappropriate. When he and his friend watch PG-13 movies, he fast forwards through even kissing scenes. This is no nerdy boy, either--he's an athletic, handsome, young boy who is not yet ready for adolescence. 

But it's coming 'round the mountain. 

And those pill boxes sit there like a proud little choo choo train.

I think I can I think I can I think I can.