Oops. It's been a long time since I wrote. I apologize. Truly, I do.
Since last we spoke...
Sweetie had that doctor's appointment I spoke of in my last post. And, just as I suspected would happen, she prescribed that Sweetie stay on the antibiotics "another 6 weeks... at least" because of the August tick possibly-a-bite-maybe-it-wasn't-we-don't-know incident. Yay. Yes, I knew that was going to be what she'd say. But, no, I'm not thrilled to have my daughter still on this medication. Now into a 6th month. Joy.
We go back in early October to see how we progress from there. To tell you the truth, I honestly don't know what I hope for anymore with this.
On the one hand - yes, once upon a time Sweetie was bit by a tick, resulting in Lyme Disease. She was treated. Perhaps not long enough? Perhaps not effectively enough in the dosage? Perhaps both? But, at the time, she felt better. Great! All better.
Then, after a few months off the antibiotics, she began to become ill. Vomiting. Approximately once a month or so. Not much else to it. Just vomiting. After which, she felt pretty much better within a few hours. Back to herself. Ooookkaaaayyyy. And then the next month would come around with the same thing. Weird. Not right. Not entirely detrimental to the way she lived the rest of her days. But a weird, regular blip in her everyday lifestyle that had to mean something was not as it should be. Seriously.
Cut to us finally getting her on board with a Lyme literate doctor, getting proper testing done, and some properly dosed long term antibiotics in her system, and... she's good. No more vomiting. That's the biggest, most noticeable difference. But, honestly, she'd stopped vomiting after a February incident. I believe we started going to her new doctor in late March. Not starting the meds, I think, until April. So it could be that we started the meds just timely enough to catch what would have been another sick day. Who knows. But at any rate, there's no more vomiting. Beyond that, it's really hard to pinpoint many specifics about Sweetie being "just not right." Other than her tired, pale look. But, you know, she's growing up. Her looks are changing anyway. Maybe she's entering an awkward stage in her development where she's not as little-girl-cute as she used to be and we're mistaking her "developing" look as a "sick" look. I don't know. I know I was no cutie pie in my tween years. It's pretty subjective, is what I'm saying. But the vomiting - yes, she was definitely doing that.
And then one day in early summer she just turned "on." I mean, the chatterbox came back. The giggling, play wrestling, can't-sit-still ball of energy girl came back. "Oh," we said. "This is how she used to be. Yay! We have our Sweetie back!" But, seriously, until we saw her "come back," we really didn't notice that she'd ever been gone. It's not like before this she'd been overly sleepy. Or complaining that she was too tired to do this or that. She just was doing more calm things. Playing Legos. Doing crafts. Watching TV. But those have always been the types of things she likes best to do anyway. We just didn't think anything of the way she'd been quietly behaving. Great! She's a good, well-behaved, peaceful little girl. Just the way we it.
But the energy, it did come back. Yes, she still loves Legos and crafting and watching TV. But just in the way she communicates, laughs, and moves. She's just "more" now. And that's a great thing.
All this to say... 6 months on antibiotics. Possibly more. That just seems a little extreme to me for a girl who's "only" real obvious issue was cyclical vomiting. I mean, I've read the horror stories. Lyme patients in bed for weeks - months! So tired that even getting up to go to the bathroom is a majorly exhausting event that sends them right back to bed for another several hours. People so sore that they can't even blink without feeling the effects. These are the people that are on 6 months or more worth of treatment. These are the people - the very worst cases - that can find no other relief but to stay on antibiotics for month after month after month. But Sweetie? All she was doing was throwing up! She was a bit pale and a bit tired looking, but not really tired acting. Surely she'd be all good after, at most, 3 or 4 months of treatment. This 6 months stuff - well, it's just gone on too long, hasn't it?!
Of course, I do have a child who tells anyone who ever asks her, at any moment, that she's "great!" A child who does not, will not, admit to any ailments of any type. She had swimmer's ear a few weeks ago. I've had swimmer's ear! It HURTS! I mean, it really, really hurts! But Sweetie? She'd tell us once a day, at first, then a few more times a day over the course of almost a week, "Ow! My ear hurts." But then the pain at that exact moment would pass and she'd be back to good. And, given that she's on antibiotics, we figured that of course she can't possibly have an ear infection! It took us days, is what I'm saying, and a particularly bad instance of middle-of-the-night ear pain to finally realize that, well, she could have swimmer's ear. Duh! And then, just last weekend, she sounded a bit stuffy. But when I asked her about it, she said she wasn't. Her nose was just a bit runny, that's all, she said. By that evening, though, after seeing her blow her nose several times, I offered her some cold medicine before she went to bed. "No! Why would I need medicine?" - "Because you're sick." - "I'm not sick! I just have a runny nose and a headache." Okaaaayyy...
So, you see... This is what we live with. I feel like I can never give her doctor an honest answer for how Sweetie's been, because Sweetie never tells me. And if you ask Sweetie directly, you're just told that "I'm great!" Maybe she has been suffering more greatly than we know! But, sure as shooting, she plugs away at life to the best of her ability and no way no how will you ever see her "sweat."
In fact, the closest I've gotten recently to knowing of real health issues with her is when Sweetie nearly broke down in tears in my car on the way to a sleepover at her Nana's. She started by saying she doesn't know why she doesn't ever like to tell anyone she doesn't feel well. She just doesn't. But, as she would be away from home overnight, she was a bit concerned for herself and her belly. Turns out, 6 months on antibiotics will make your intestines act in undesirable ways. And she was just afraid of how she'd be feeling overnight and what extra items she may need that she'd not packed for herself. (In the end, this was the night of the terrible middle-of-the-night earache. Her belly was fine. But Nana and Sweetie spent a good couple hours, at least, up in the wee hours trying to bring the ear pain down.)
So, there's that. I'm now able to keep track of how her belly's feeling.... if I ask. Cuz' lord know's she'd not saying anything more. At least she's answering my questions. Or, I should say, she gives me the "thumbs up" or some alternative gesture depending on how things are going on any particular day.
But on the other hand (remember? We had the first hand waaaay up above) I really don't know. She still looks tired to me. Still with the paleness and dark eyes. But not all the time. Yeah, I think her energy is still up, but I don't know. Like I said, she still likes to play Legos and do crafts - calm activities - whether energetic or not. And - 6 months on antibiotics! I know about Lyme! It hides. It gets "used to" an antibiotic. It "goes away"/shields itself for the duration of a course of medication. Then, when that's done, it comes back out to party. So, while I find 6+ months extreme for the relatively minor symptoms Sweetie was displaying, I have no clue at all if we've "got it." If she's "cured." If she'll ever be cured. I just. don't. know.
But, we go back. We see the doctor again. She advises what she thinks is the best next step for Sweetie. We wait and see what we're going to do.
For now, it's all the same as it's ever been. We're in such a routine now that I tell you, when she is off the antibiotics, I think we'll all feel like something is missing from our lives.
I'd just love, love, love if I could say with any certainty at all that the thing that's missing is Lyme.
