Friday, August 30, 2013

Worries and Other Emotions

Back to school time!

Sweetie started 5th grade yesterday, and she loves it! She had a great day, with her only complaint being that each class seemed to go by in, like, a minute. The time just flew. Old friends, new teacher, new responsibilities and same ol' happy, school-loving Sweetie. Yay!

Then Hubby picked her up from her after-school time at my parents' house. He said she hardly talked all the way home. They stopped at a store and she quietly walked besides him, taking a hold of his hand as they went along instead of skipperdie-dooing all throughout the aisles, taking up as much flailing-arms space as she possibly could - as is her typical M.O. I called when I was on my way home from work, asking how he and she were. "She's a little quiet, but good."

When I walked in the door, she was huddled on the couch, not answering my questions at all. Only shaking her head when I asked her if she felt alright.

Woo hoo. New record! 1st day of school and she comes home sick.

By and by, though, she perked up. She didn't have a fever and only stated that her stomach felt bad... maybe she'd throw up? She wasn't sure. In the end, by the time she got ready and was off to bed, she was joking and chattering once again. Nothing came of anything. She woke up this morning feeling "great!"

Hmmm... that was weird.

We had been hanging out with friends earlier in the week whose kids had just gotten over a brief low fever/stuffy nose thing. Maybe she'd gotten a little of that? Who knows.

Anyway, prior to yesterday's mystery weirdness, a week ago she'd gone to a friend's birthday party, where they all went glow bowling. The birthday girl's mom dropped off all the guests on their way home and Sweetie walked in the door complaining of a headache.

Tear-inducing, turned-her-white-as-a-ghost migraine, more like it.

Nothing that a good vomiting couldn't cure! After that, she slept well through the night and woke up just fine.

That one, in and of itself, seemed pretty straight forward. Heck, that's just like me! I tend to get 1 or 2 migraines a year, but once I get sick from it I'm almost instantly feeling better. Like mother like daughter (and Auntie and a few other family members on both sides of the family, actually.)

But, still... put it all together and it's a bit suspicious. A bit, shall we say - familiar - with Sweetie.

Bouts of sour stomach and increasingly bad headaches, all that come on rather all-of-a-sudden like and leave just as quickly. Hey! That's Sweetie's Lyme "thing"! Great to see you back!

Not.

Or it's just an isolated migraine brought on by crazy lights and loud noise, and one case of upset stomach as a result of jitters and/or excitement after a first day back at school.

Or possibly, yes, the above... but because she's now a kid more apt to be prone to uncomfortableness because of the Lyme.

A couple things running through my mind now, both of which I've been wanting to write about for the last few weeks and just haven't made the time to do it. Neither of which are terribly connected to the other, but given the circumstances, I think I'm now going to give it a shot.

Firstly, I've been wanting to report on what the prime summer activity has been in our little family. Geocaching! Basically, treasure hunting out in the world, going by only a handful of clues and coordinates on a GPSer. It's a hobby my Hubby has been in love with for the last 4 years or so, and this summer Sweetie was interested on going on every-other-weekend geocaching treks. So, away we went! And, given the nature of geocaching, we found ourselves many times in the heart of the woods, where many a cache is hidden.

"Gee," you might say. "You continue to take your daughter into the woods on a regular basis - where ticks are plentiful! - even after her chronic Lyme diagnosis?!" Why, yes. Yes we do. And, if I'd written a post on this a few weeks back as I'd originally planned, I would have extolled the importance of not "living by the Lyme," not eradicating what we love, just because it tends to take us to places where potentially more tick bites could occur - for Sweetie or Hubby or I!

But now... I'm wondering if Sweetie was, in fact, bitten again during one of these outings and that's why it appears her Lyme symptoms are coming out to "play" again.

Granted, it's also important to note that we each have geocaching-specific clothes we wear each time that has been sprayed with Permethrin, which does a great job at keeping ticks away. We also always do a (admittedly cursory) tick check and anti-ceptic towelette wipe-down once we're out of the woods. So, with that, I'm reasonably certain we've all managed to stay tick-free this summer.

However, I'm also ashamed to admit that I pretty much never did a detailed tick check on her once we were home. Or, for that matter, on any random given day after some playtime outside. Hubby and I both told Sweetie on a few occasions that she's really got to be checking herself each night as she gets ready for bed, and how important it is to make sure she's not bit again. But - come nighttime, tick checks were quite honestly the last thing on my mind - to do, or make sure were done.

I know. You'd think me of all people would be super conscientious of making sure none of us had the little buggers hiding out on us. But, nope. I rarely thought of it. Or, if I did, Sweetie had already gone to bed about a half an hour before. "Oh well. I'm sure she's fine. Anyway, those things are so tiny that, even if she did have one on her, I'd probably still not see it even if I looked her over!"

Ha! Like I said, maybe she's been bit again and I really, really should have been on top of that!

Secondly, I wanted to write a little bit about someone I know whose young daughter has Cystic Fibrosis. I am so impressed with all that this family does to support the Cystic Fibrosis Foundation and the incredible need to find a cure for this condition. The whole family is amazing and they do so much in support of not only their younger daughter, but everyone who is struggling with CF. Yet, at the same time, even they admit that their daughter is - by and large - a strong, healthy little girl. She is a happy, active, thriving little girl who, yes, has to take her daily medicines and supplements, and has to go through her daily routines to make sure her lungs stay clear and strong, and she goes for her regular CF checkups multiple times a year. But she's doing it! And, yes, she needs to be extra careful around other sick people. And, yes, she comes down with the typical childhood colds and whatnot. And, yes, these "typical" childhood illnesses are a whole lot more scary and ominous for both her and her family, as any little thing could affect her CF in terrible ways. Heck, any seemingly typical childhood illness could actually be her CF acting up! But - knock on wood - she continues to be great through it all.

She's so great, in fact, that I'm sure it's relatively easy for this family to more or less "forget" about her CF. I mean, asides from her daily CF related pills and regimens. Despite all that, and to the world at large, this girl's CF is really quite a hidden condition. A condition that, thank Goodness, hasn't brought anything terrible upon her at all at this point - and hopefully never will. And yet - there she and her family are, working tirelessly time after time to bring awareness of CF and fighting for a cure. Yes, for their daughter, but everyone else stricken with it as well.

When I heard this mom write about why it is that they do all they do for the Cystic Fibrosis Foundation when, really, they themselves have a comparably good situation, it struck a cord with me. And made me feel, I admit, a bit - oh, I don't know - "ashamed" maybe isn't quite the right word. But, you know, like I'd kind of taken Sweetie's chronic Lyme and done quite the opposite... once the disease, for Sweetie, was noticeably under control, I just went ahead and looked the other way. La de da. Lyme? What Lyme? Sweetie's good! Nothing to even talk about anymore. So many others with Lyme are the real sufferers. Sweetie's not in that sad, badly-off group. To compare her to the ones who are truly suffering is an injustice to them. She's a trooper! Moving right along...

Man. Aren't I a real peach? My daughter's handling her less-than-ideal situation with pure "great"ness! My daughter is rising above! My daughter is more-than-able to pass for "healthy" on any given day. My daughter is lucky! And so? That's how we move forward. Forget about how bad others have it or how badly she could have had it. That's the best way to approach a less-than-ideal situation! Thank your lucky stars and turn a blind eye to all the gunk.

Maybe "ashamed" is the right word after all.

Instead of turning a blind eye and moving forward like nothing's happened, we really should be acknowledging Sweetie's own daily regimen and how it is these very things that are keeping her so healthy. Instead of gratefully walking away with our rather healthy Sweetie, we should be continuing our educational growth on all things Lyme and finding out what can be done to cure it for all. Instead of only remembering "Hey, Sweetie has chronic Lyme" when she falls sick with any little upset stomach or headache, we should be remembering and helping those with Lyme who suffer so much worse and so much more often. We should be speaking out, not walking away.

Speaking of ashamed... it's almost like I'm ashamed that my daughter - who has been diagnosed with and is managing chronic Lyme - is really handling her Lyme exceptionally well and really seems to feel very little effect from it, when there are so many others out there with the exact same thing who are just absolutely tortured on a daily basis from how beaten down by Lyme they've become.

Phew... that was a tough sentence to write. But let me be clear - I'm 100% NOT ashamed of my daughter AT ALL! I am so amazed and proud and impressed with my daughter, I'd never in a million years be able to express to you how much in every single way. No. This is all on me. I feel badly that we seemed to have "gotten off" pretty darn well after Sweetie's diagnosis. So well that it's easily forgettable. Not in the least comparable to the terrible cases. Shouldn't even be called the same thing as what the other Lyme victims are suffering through. Really, we - she - for the most part - got off Scott free.

For which I am, very, very grateful! But, at the same time, for which I am very, very worried -when times do become a bit suspicious and "Lymey" - that Sweetie might find herself falling into that "other" group one day because we've carelessly let our gaze slip one blink too far away from the happy, healthy, great road she's currently on.

So, yeah. We're good. Sweetie's good. But she's had a couple hiccups of late. Which worry me. Which make me doubt myself. Which always put me back in check to what could be something much, much more than a typical childhood sickness.

She really could fall at any moment. Likewise, she really could remain as well as she usually is for the rest of her life. Just like all of us, I suppose.

We're really all in the same boat. We're all just as likely to be healthy as we are to be sick. No on is more or less likely to be stricken with bad news - or delighted by good news! Sweetie has chronic Lyme and is doing well with it. Others have it and are not. Are doing the best they can. Bottom line - we all should be mindful of each other, grateful for the blessings we have and caring of the support we can offer to others who need it.

Heck, we all need a little support in some way or another.

And I'm going to work hard to try not to forget it!

2 comments:

  1. So happy to see you still doing out-of-doors activities, as nature-deficit-disorder is a real problem, too!

    I saw a lot of CF patients, when I worked at Children's; such a horrendous disease. It seems like they've been on the brink of a "cure" for decades now, having isolated the gene, but yet, this hopeful discovery is always still out of reach. I always give to the "65 Roses" campaign, because I really support the efforts to advance treatment. There has been tremendous progress. Whereas, surviving to the teens was all that was expected previously, many CF patients are able to live long into their adulthood. In the end though, at present, it is always a fatal disease.

    Switching gears, I've seen migraines exhibit weird symptoms, so I wouldn't rule that out as the occasional cause of upset stomachs. There was a lady, with whom I worked, who for years would get their sudden, overwhelming, nauseous events, that would necessitate her leaving work. Finally, she was diagnosed with migraines, despite never having had a headache, and the migraine meds really eased the episode. Another gal, with whom I worked, had sudden "stroke-like" symptoms one morn, and was rushed to the hospital, only to be diagnosed with migraines.

    Interesting, thought-provoking post. It stirred up past work memories for me!

    ReplyDelete
    Replies
    1. I have been unable to find info on Amy Linder.... the blog seems outdated, any other groups going on with Amy?

      Delete