Saturday, February 18, 2012

I Just Don't Know

And neither, apparently, does anybody else.

I don't know if her now 4 separate incidences of vomiting - each about a month or so apart - are due to a weak gut after 6 weeks of antibiotics last summer, Lyme that remains in her system despite aggressive treatment, or Post Lyme Disease Syndrome, (which seems to me to be a fancy way of saying "we don't know what's going on, so we'll just call it this.") Or maybe something else entirely.

I don't know if perhaps it was her contracting Lyme - and, let's agree for now, successfully ridding herself of it - that weakened her immune system enough to "activate" whatever other ailment she's currently suffering from that had previously lain dormant in her system.

I don't know if I should believe the doctor we just saw, who said that once you get Lyme Disease you can't get it again, or a source such as Boston Children's Hospital who says that yes, in fact, you can.

I don't know if I should also believe said doctor's claim that young children, especially, cannot get chronic Lyme Disease, or my own knowledge of at least 2 other children I know personally who have been diagnosed with it.

(I do believe there must be a note in Sweetie's medical file that says "Warning: Crazy Paranoid Mom. Talk to slowly and repeat reassurances often.")

I don't know which people I should listen to, which websites I should believe, or which articles provide up-to-date, accurate information. Which first-hand accounts are worth noting and which are not.

I do know that I am not trying to "make" Sweetie still have Lyme Disease.

I just know that I'm trying to figure out what this abnormal (I mean, it is to me - wouldn't you think so too?), cyclical, "vomiting only" ailment is that Sweetie's currently dealing with.

I know that there is something called Cyclic Vomiting Syndrome. Fine. Again, to me this just seems like something some "experts" made up because they couldn't diagnose the real problem.

I know that our household diet is the same as ever. We have the same several dinners we rotate among, and Sweetie has pretty much the same lunch everyday. There have been no obvious triggers to when she's going to be hit with nausea, other than watching the weeks pass and silently figuring on the every 4 - 6 weeks pattern.

I do not think anything will come of last Thursdays blood test for Celiac Disease nor the X-ray to check her I don't even know what (her stomach? Intestines?). I do think the doctor ordered these tests just so he could say he's doing something. Especially after agreeing with me that, if it is Celiac, wouldn't she be sick after every time she has gluten? We don't have it often, but we don't hide from it either.

I'm sorry, but I do not think it is "just a coincidence" that "whatever this is" is showing itself now, right after last summer's Lyme diagnosis and treatment. Not after previously knowing my daughter to be a very healthy kid, in the grand scheme of things.

I'm sorry, but to me this has got to be, if not directly Lyme Disease, closely related to it or a separate ailment brought on by it.

I don't know if I just let her be, taking each episode as it comes, and hoping that there just won't be another one. Just accept that it's this Post Lyme Disease Syndrome, and that it may take up to a several years to get over, and not say boo to any medical professional again about it because it's just the expected course of how things will go for her.

Or... should I keep fighting for my daughter and not stop until I get to some satisfying answers.

But, frankly, I don't even know anymore if I'm trying to find someone who will tell me what I "want" to hear, or I'm not being receptive enough to what I'm being told.

I do know that another doctor in the practice we currently take Sweetie to told me - and this made sense - that Sweetie's immune system went through a lot last summer, so she is very likely to get "every little thing out there," especially over the next year or so, as her immune system builds itself back up to normal.

Fine. I also know that there is a particularly nasty norovirus going around now. A virus that I've most likely been exposed to several times, given the many people I come into contact with at one of my jobs. A virus that Sweetie's no doubt come into contact with too, at her small school or church group. And so, I've been waiting for her to come down with it. Expecting her to come down with it. Figuring, 2 Fridays ago when the nurse called me, that she, in fact, had it and would be down for the count.

But... no. It was "just" another one of her "regularly scheduled episodes." She threw up twice and was good to go.

Now, if her system is that beaten down, shouldn't she have brought this thing home by now? I mean, it's been out there a couple months or so by now. Not that I'm particularly wishing this on her - or us. I just find it peculiar that my little Sweetie with the fragile immune system has been able to successfully keep this stomach bug away. (And I'm hoping that remains the case, don't get me wrong. Knocking on wood...)

I am trying to get in with a Lyme literate doctor in the area. I know of at least a couple, but I'm not yet sure they are accepting new patients. If not them, somebody out there has got to be a better match for Sweetie, medically speaking, than the doctors in the practice she's currently at - almost all of whom admit straight away that they are not Lyme experts in any way.

I know medical professionals, who are not Sweetie's doctors, but who know her, who have informed me a great deal about the intricacies and little known facts about Lyme. But after last Thursday's doctor appointment for Sweetie, with that doctor warning me to be weary of "everything out there to be read," saying that free speech is a great thing, but who's to say who's right and who's wrong - I'm left with wondering just that.

Exactly. Who is to say. Not that website you, doctor, gave me to check out regarding all childhood health issues. I went there. You must not have given the right address. The site was unrelated. And similarly addressed sites had no info on Lyme when I searched.

It all leaves a mom mind-boggled, confused, frustrated and exhausted. Worried and reassured all at the same time.

What to do, what to do.

I just don't know...

Friday, February 10, 2012

You Can Be Your Hero, Baby

A short post today, but I wanted to be sure to get this down as one "for the books."

As part of Sweetie's homework yesterday, she was assigned to write a letter to one of her heroes, and within the letter she had to use at least 3 spelling words.

She came whining to me that this assignment was "impossible!" "Why?" I asked. "This'll be easy. Just pick someone you look up to. Who do you most admire?"

I was thinking Daddy would be at the top of this list. Maybe even Nana. I didn't honestly see that I would be a contender at all.

And I was right - about me, anyway. But oh so wrong as well. Who did Sweetie answer as the person she thinks is the best, coolest, awesomest of them all?


Yep. In response to my question, she merely pointed (assuredly) to herself.

That's my girl!

"Okay, great! You can write a letter to yourself. That'll be fine with your teacher."

Sweetie thought no. No, it wouldn't.

But in the end, she ended up writing a letter to Super (Sweetie) - her favorite playtime superhero to imagine herself as. I actually haven't "seen" or heard word from Super Sweetie in quite awhile. But in this instance, she was the best option for Sweetie to write to, other than herself. :)

It's come up a few times before, actually, that I'll be teasing Sweetie, asking her who she loves most in the world (trying to get her to say me, expecting she'll say Daddy or maybe he and I both the same). But without fail, she always answers by pointing to herself. "I love ME the most of all!" she answers proudly and loudly.

Gotta love a girl who knows herself so well and loves herself so deeply. She's my confident, self-assured superstar. And as I look down into her shining, bright face, I look up to her in so many ways.

You don't think you can write a letter to yourself as your own hero, Sweetie. But I can write to my hero. In fact, it's what I've been doing here for years now and will continue to do for as long as I can.