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!


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!

Friday, July 12, 2013

If You Can't Say Anything Bad...

...then don't say anything at all.

This common, albeit backwards, saying seems to be my take on this blog.  

Which is, yah know, a good thing. I guess. Although, in our case, this doesn't make for a very post-heavy blog. But that's okay. No sicky = no writey. That's just the way it is around here.

When you think about it that way, I'm glad to see such a blah, unattended-to blog here. Sorry for my readers who are looking for more info... but happy for us that Sweetie's been well. 

Well, I'm here with an update, so you know what that must mean...

Duh, duh, DUH....

Actually, she's still been okay. But... just not herself. Maybe it's not the Lyme at all! Maybe it's the heat, the oppressive humidity, or changing hormones. Maybe all of that! Maybe that's it. But, whatever, she hasn't been right, and Hubby and I have taken notice.

Let me back up some...

So you may have remembered from this other post that we've been slowly reducing Sweetie's herbal supplements dosage, under doctor's watch, with an eye to eventually getting her off of it completely. She's been on just one pill every morning for the last 5 weeks, and today was to be her last day of that. Nothing more. Done. Complete. Off of everything. 


Hubby and I noticed her, over this last week or so, just being... more quiet. Tired. Blah. Grumpy. Whiney. Not all the time. But a goodly noticeable amount of time. And I've noticed her running off to the bathroom a fair amount, out of the blue, too. Just not herself.

We'd ask her how she was, how she was feeling, and she'd say "fine," "I feel good!" She was adamant about this every time, but I also noticed that she rarely, if ever, described herself as "great" as is her usual personally-assessed state. Maybe she's just over the "great" thing? Or she truly, even subconsciously, knew that she was feeling... oh, I don't know... just less than. Not herself. 

The way I see it is that I think she's reverted to feeling her usual Lyme-ridden indescribably yucky sick, yet because she can't put a finger on exactly what it is that she feels yucky about, she just says she's good, or fine, or even great. But Hubby and I can see it. She's just not right. 

It's hard. She's definitely not outright sick. Lord knows I've heard of much, much worse off cases of Lyme, and I'm thankful every day that Sweetie is managing so well with what she's been handed. But still... we don't like seeing her any less than how we know her to be when she's feeling well. 

And maybe it's the fact that she was getting so close to being off the herbals that made me start taking more careful notice of her day-to-day behavior and health. Because, honestly, she's been so well that I've almost forgotten that she has Lyme at all. I've almost convinced myself that, hey, the herbals and all the antibiotics have actually killed it all off! She's actually Lyme-free now, because of all she's been on! Or, not even that. It's just, she's been so consistently well that I haven't even given the Lyme a second thought - good or bad. She's just Sweetie again. She's been herself for so long, it's all been a non-issue. 

So, getting so close to being off of everything... yeah, maybe I've just returned to my own hypercritical analysis of her behavior. Carefully assessing how she is to see if taking away the meds is really the best idea. Maybe even seeing behavior that I'm deciding is "new" or "different" when, really, that's just typical Sweetie. 

I'd say that... but Hubby has seen it too. And, when asked, even my mom has admitted that Sweetie has maybe been a bit grumpier than usual, of late. Oh, and, yeah, she has run off to the bathroom a few times at there house when, usually, she'd hardly ever go at all if she was only there for an hour or so. 

And so, we made the decision that we should really alert Sweetie's doctors to the changes we've seen. I also wanted to let the doctor know that Sweetie is currently involved in Theater Camp and is to be part of the culminating production at the end of the month. So, yeah, part of my concern is that I don't want to see her get sicker and either miss some camp days/rehearsals and/or possibly miss the production itself. 

One of the many things I love about Sweetie's doctor - I can email her at any time, even over weekends, and she will respond and diagnose, if she's confidently able to, without even having to see her. As such, she responded to my lengthy email, in which I detailed not only Hubby and my observations but Sweetie's denial of anything being "off." I wondered in the email if we should A) take Sweetie off the herbals, as planned, B) keep her on the 1 pill a day as she's been doing the last 5 weeks, or C) increase her back to 2 pills a day. 

The doc advised option C. Back up to 2 pills a day. 

Okay, then. So be it.

But then, we had to tell Sweetie. I let her know that I wrote to her doctor, telling her how Daddy and I have noticed this change in Sweetie's behavior. 

At first, Sweetie denied everything. She's been fine! She hasn't been whiney! She hasn't been too tired - except that she's been going to bed a bit late recently due to our crazy schedule (true). But we stood our ground and pointed out some specific examples of her off behavior. Hubby asked her point blank if she'd agree that she's been low energy recently. With that, she didn't deny it anymore. She agreed. She hasn't been herself. Before I could go on to say that her doctor wants us to increase her dosage, Sweetie stated that she thinks she should just stay at 1 pill a day until her current bottle runs out. But when I said, in fact, that her doctor wants us to have Sweetie go back to 2 pills a day, Sweetie said okay.

No fights. Not particularly upset, really at all, that the plan to stop meds had been whisked away from her. Nothing. Peace.

To further solidify the decision, I reminded Sweetie how much I trust her doctor, and before I could present reasons for this trust, Sweetie said, "I know, I know! She's Lyme literate and knows what she's talking about."

Like I said. Peace with the decision. It's just the way it is.

This discussion was just before bedtime for Sweetie - a time when, for the last 5 weeks, she's NOT been taking a pill, as her once-a-day has been in the morning. She asked if she should start that night with the second pill. We said she might as well. 

That was Tuesday night of this week.

Today is Friday and - wow! I took Sweetie to camp this morning, as I have the other days this week, and she was all talk, talk, talk, talk, talk, talk, talk. The other mornings? Tired. Silent. Blah. One word answer to questions. And it's not like she's had a boring week and today was just the first morning she had interesting things to tell me about. She's in theater camp! She's got singing and choreography and lines and new friends and camp games and swimming and all sorts of other things she should have/could have been jabbering on about all week. But, nope. Nothing. Until today. Heck, I don't even remember what she was talking about in the car this morning, but I definitely remember that none of it was at all what I'd call important. It was all just silly kid yammering. It was joyful and silly and energetic. For the first time this week. For the first time in a couple weeks!

It was Sweetie again.

And it was great. 

Friday, April 19, 2013

Not Sure At All


I just can't even.


Nobody these days "lives under a rock." Especially those of you who have access to reading this here blog - or any blog, for that matter. If you have access to any media whatsoever, technological or otherwise, you know. You know what happened on Monday. You know what happened last night & what's going on now. I don't need to tell you about it and I certainly don't feel qualified nor, frankly, up to it energetically or spiritually, to write about it here. Many other, much more eloquent writers, are able to and will share their thoughts on it all. I just...

...The best I can say is a summation of what a fellow blogger friend wrote after participating in the Marathon on Monday. You can read his entire post here. I love his words: "Evil is not a thing, it's a lack of a thing. It's a void where the relationship between God and something, someone, in the world ought to be. We can fill that space, leave no room for evil." This is what we must do - leave no room for evil. Only love. Big love! Together, we can fill the void.

And now... what I really want to do... what I've been wanting to do for a few days now, if only I had the time... is to write, of course, about Sweetie and the developments she's been through this week. Which, you know, is fine. After all, this is a blog for her. About her. A blog dedicated to what she's going through as a kid diagnosed with Chronic Lyme Disease, and what we, as her parents, are experiencing alongside her. Of course it makes sense for me to want to write about her and her situation on this blog. Especially in a week when she's been experiencing her own personal challenges, health-wise.

But, it just feels so... little, now. So unimportant. And not only that, but so presumptuous of me to put a post out there today, of all days. A blog post all about her and us and her health and concerns therein... when so many bigger things are happening all around us. Who the heck gives a damn about her and us when, ultimately, she's just fine, and knowing others so very close to home are anything but fine at all. It doesn't feel right.

But it also feels so right. To write. About anything else. To escape into my own tiny world. My world, filled with my Sweetie and Hubby and family and all my loved ones who I know care specifically about us and her and me. To do what I do, and write about what I know. Especially on a day like today when it's impossible to grasp the meaning of what's going on in the world - even if it's so close to home. Especially when it's so close to home. Impossible to understand the insanity of it all.

To be grounded. Safe.

To write. And pretend, just for the moment, that any current worries I may have for Sweetie are the biggest worries to be had in this world. Wouldn't that be nice.

Moving forward...

So. Sweetie has been sick this week. Actually, it started last Wednesday. Sent her off to school in the morning - fine. Come home that evening to find her - sick. But, you know, just a cold. Eh. No big deal. She'll be fine.

And she was. Through Thursday, Friday and all through the weekend. Of course, she had a terrible cough along with her general stuffiness, thus having us cancel all our plans on Sunday so we could just hunker down and stay home. But she, being the ever great Sweetie that she is, was a trooper through it all and really gave us no pause to think anything much of it. Just a cold. Big deal.

Then came Monday morning. I woke her up for school, then checked back in with her a few minutes later to see that she was up and getting dressed. Nope. Not so much. She looked, eh, okay. Okay enough, that is. Like a kid who had a cold, as she did. But she was wishing of getting a "snooze." She was not wanting to get up and to school.

And, as I always do, every time when she's all-of-a-sudden not wanting to go to school, I questioned her on whether or not something was "up" at school. Was there a particular reason she didn't want to go today? No, there wasn't. There never is. Sweetie likes school. She's not the type of kid who ever tries to get out of going to school. But every time... I always find myself doubting her motives. She was fine enough to plan to go to school just the night before. What, overnight in her sleep, had changed that so suddenly?

I took her temperature and it was, eh, kinda high. 100 degrees. Okay, then. Mondays, of all the days, are among the best for me to keep her home, per my schedule. I told her, fine - you can stay home today, but you must rest. No jumpy, happy, crazy activity, happy to be home from school. You have to rest to get over his cold.


And then... she wasn't hungry. For anything. And then... her temp went up to 101.something. She was sleepy. Her temp went up to 103.something. Her cough was still as bad as ever, while she seemed a bit better off in the stuffy nose department. She was sick. For sure.

I called her doctor and took her in to be seen that afternoon. As we described the events of the last few days, and the sudden change to "sick" that morning, her doc knowingly looked at me, saying it sounded like something bacterial was going on. Especially considering that Sweetie's oxygenation test just then was really low. Huh. (How low? I don't know. I'm so mad at myself for not asking what the numbers were. How low? What's normal? I don't know. All I know is what the doctor said - it was low.)

A quick checkup later, and there we had it - a mild case of walking pneumonia for Sweetie.

Truth be told, as we waited between the time I called for the appointment and our trip into see her doctor, I suspected that Sweetie may have pneumonia. Why? I have no idea. I've never, to my knowledge, had pneumonia. My mom had it over this last Christmas time, but other than that I'm not aware of anyone in my family ever coming down with it. But there ya go. That's what I suspected she had and that's what she has. A mom can always tell.

As we waited to go to the doctor, and certainly in the time since, I've of course been researching online about pneumonia and its connection, if any, to Chronic Lyme Disease. And, wouldn't you know it, but there are a couple certain kinds of pneumonia that specifically plague those with Chronic Lyme.

This new information, coupled with my nagging feeling that Sweetie's simple little cold turned awfully quickly into pneumonia... well, it just has me wondering, that's all.

BUT... did I ask her doctor about any possible connection between the Lyme and her pneumonia? No. Of course I didn't! Because that would have been smart! Just like I didn't ask what Sweetie's oxygenation levels were. Heck, no. Just tell me what she's got, what she needs to take to fix it, and how long to keep her out of school. Other than that... we're good. I'll take it from here.

Man, but I wish I asked more questions.

On the other hand, I know in the past I've asked Sweetie's doctor if random whatever symptoms Sweetie has been experiencing are due to her Lyme. And most, if not all of the time, her doctor tells me "we can't be sure." Grrrr! I know the doc's not trying to play games with us... I know... Lyme is a tricky little bastard and, really, we can't be sure.

I guess these past answers were in the back of my mind Monday and, either knowingly or unknowingly, kept me from asking what I "knew" to be an unanswerable question. We can't be sure.

All we can do is wait. And hope. If what Sweetie has is one of those pneumonia strains that shows up a lot of times in Lyme patients... well, she'll probably get it again. And then we'll know. Or at least have a better understanding.

I guess I have to realize that, from now on, whenever Sweetie - my used-to-be-a-very-healthy-little-girl Sweetie - gets sick, that it may be because of the Lyme. And, well, maybe it's just her being sick.

Maybe my used-to-be-a-very-healthy-little-girl is having one heck of a bad health year this year (strep through, stomach bug, pneumonia) simply because she has been so healthy before and now all the sicknesses are finally catching up to her, as they naturally would one day anyway. OR, she's been so sick lately because her immune system is not what it should be, because of the Lyme, thus making it easier for her to catch all the bad germs. OR, all these rather major illnesses are a direct result of the Lyme. Or any combination therein. Or whatever. Who knows.

Maybe it's just not Sweetie's year.

I guess, all in all, it shouldn't really matter why Sweetie has been sick so often this year. She's sick. Deal with the illnesses as they come along. No big deal.

But, you know. It does matter.

Because it would be nice to know, I think, if her health issues are directly, or even indirectly, related to her Lyme. Then we would know if she's likely to continue getting sick. Or, conversely, if, like I said, she's just having a bad time of it now but, this too shall pass.

Will this pass? Or is this what her life is now? Always on the lookout? Always being cautious. Always another "feeling sick" day in the not too far off future?

Will my used-to-be-a-very-healthy-little-girl ever return to her very healthy days? Is this just a blip on her map? Or is this her new map?

Who knows. We can't be sure.

Friday, April 5, 2013

Where Do You Shine?

Another blog post brewing in my mind, another challenging personal decision of, "which blog does this really belong to?" I'm going with this one, although it really could work just as well on my other one.


I like to consider myself a reader. Although, if you look at the other women in my book club, you'll find that I'm, by far, the slowest, least prolific reader of them all. I often have trouble getting through the one book each month we're "assigned" to read - especially if I don't find it completely interesting. My co-clubbers, though... these awesome ladies can not only make it through this one book, but several others as well, all before we meet again each 4 weeks or so. Amazing. I don't see how they can do it.

But... this last month, I must say I've done pretty well for myself on the reading front. Our club meets next Friday evening and I'll be able to report on not only the assigned book, but a couple others as well. Yes, it took me a few false starts to find some books with characters I was truly interested in learning more about. But when I did, I read their stories fast and furiously, excited to learn more about their worlds and what drama they'd find themselves in as the pages kept turning.

Funny thing about favorite books. You love them so much that you can't put them down, which only makes your time with these wonderful stories that much shorter. Boo.


It's occurred to me that my favorite books are those that make me think. What is happening here? Why does the main character think one thing is true, while the others think she's crazy? What would life be like if this was really how the world worked? How would I feel if I was in this same situation? When I love a book, I actually find it really difficult to stop thinking about it and I often bring my Hubby and Sweetie into the fictional world, telling them the story and using them to either bounce plot resolution ideas off of or ruminate with them about this newly created "what if" situation of "what if our world was really like the one that I'm reading about?" Thankfully, Hubby's a reader too, and Sweetie loves stories, so they're both good for some ideas and don't seem to mind terribly much when I start blabbering on about "my book" every night.

Currently, I'm reading a truly great "what if" book. It's called The Illumination* and it's about how, one day, all the pains of the world just start to glow with light. You cut your finger? Yes, it will hurt just as it ever would. But it also shines a light from within it. You have a headache? Your forehead glows with the light of the pain. And let's hope you don't bump your nose right around Christmas time or everyone will start calling you Rudolf.

This is really a fascinating concept, if you think about it. Kids start hurting themselves on purpose just to see this or that body part shine with the pain. Abused women and children can no longer hide their bruised and battered bodies under layers of clothing - their pain shines through. Doctors and emergency workers need to wear sunglass from all the intensely bright light they're subjected to every single day. In fact, doctors start treating emergency patients based on how brightly their injuries shine. "Oh, you're beaming like a beacon - come right this way! You over there glowing more dimly in the corner - you can wait a bit." No pain in the world can be hidden. You got painful hemorrhoids? Sorry, my friend, but people are gonna know about it. It's just the way it is now.

So, doing what I do, I started telling Hubby and Sweetie about this book. I told them how I, since reading this story, have really started to pay more attention to how my body feels. If I was glowing with pain right now, where would my light shine? Well, my legs have been crossed for a bit, and actually that kind of hurts a little. So I'd probably have a soft glow going on behind my right knee. And my lower back, as usual, hurts right now - but not as badly as other times. It too would be a low-light shine. But at it's worst? Yeah, my back would be shining with the best of 'em. What about you?

Both Hubby and Sweetie thought this concept was just as interesting as I did, and they too were able to really "feel" their bodies at that moment and pinpoint where a light would be shining for them - if at all. And not only that, but how brightly that light would shine. From Hubby's ever-tired feet to the on-going dull headache he's seemed to have of late, he was able to say what would, or actually really wouldn't, be too bright of a light. And Sweetie - she of the "I'm great every day!" attitude - offered up that her lips, at that moment, would shine a bit because of how chapped they were. And later after dinner? She even said that, if we actually did live in such a world where our pains lit up, we'd probably be able to see that she had a bit of a tummy cramp right then from the light coming from her middle.

Huh. What a great tool. For us all, really, to honestly take notice of our bodies and how we're feeling. But for Sweetie especially, I think. Instead of us asking her every once in awhile how she's feeling, only to receive her usual "great!" response - and us never really knowing what "great" means for her... we can ask her "where, if anywhere, would you shine right now?" For the last couple days, I actually haven't even had to ask this. Sweetie offers up for herself, "I'd be shining right here (points to her just-pinched thumb as she pulls it away from the offending door before too much injury occurs) if our pains lit up."

I told Sweetie how great I think this new way of thinking about pain really is, especially for her. I pointed out to her how, if that was the world we lived in, she could no longer pass off her dismissive "I'm great! I'm fine!" We'd be able to see quite plainly for ourselves just how true, or not, that statement really is by how much, and where, her body glows. I told her I think that's what I'm going to do from now on. No more asking her how she is. From now on, I'll ask her, "Are you shining anywhere? Where do you shine?"

Of late, I really do think Sweetie's doing pretty great. Her reduced dosage of her herbal supplements has done nothing to change her daily health for the worse. 1 month down, 2 more months to go. Hopefully she'll stay just as symptom-free as she's been until that next doctor appointment. Here's hoping.

But if ever she does have something to report - or I suspect she's not feeling all that well - at least I'll be able to know a little better what exactly it is that's got her feeling yucky. All I'll have to do is ask her that great new question - "where do you shine?"


(*Book Club friends - As much as I recommend this book, please hold off on reading it now. It may very well be my next pick when it's my turn to choose again. I've said a lot about the premise here, but there's so much more to it too. It'll be a great read for us, I'm sure.)

Monday, March 4, 2013

Good Question

... But, as like with all good questions, I don't know the answer.

I just got home from taking Sweetie to her latest LLMD appointment. She's been on a Wormwood Combination supplement for the last several months. I can't even remember anymore. At least 4 or 5 months. Taking 1 pill in the morning and 2 pills at night.

Today, she graduated to a lower dosage. 1 pill in the morning and 1 pill at night.

Her doctor went on to say that, if this lower dosage goes well (meaning no returning Lyme symptoms), then, in 3 months time, she'll reduce it to only 1 pill in the morning. And that at only a month or so before taking her off completely (again, if she maintains her health with the still lowering dosages.)

Before we left, her doctor asked Sweetie if she had any questions, to which Sweetie said no. But then she and I in the car alone? She wondered...

"If I'm able to go down to 2 pills a day then 1 pill a day then no pills at all, and I feel okay, does that mean that the Lyme is gone?"

"Well,... hmmmm,... uhhhh,... I don't think so. I think it means that it's just well managed. The Lyme will always be there. We just figured out how to make you feel well anyway. Who knows? It may mean that you can be off any medicine most of the time, but that maybe once a year you feel pretty yucky and would have to take supplements again for a month or whatever. As an example. I'm just sayin. I don't know. But that would be a really great question for you to ask your doctor next time we see her. She would be able to answer yes or no, with a much better explanation than I'd ever be able to give you."

But! This is all putting the cart before the horse. We need to first see that reducing her daily dosage by 1 pill will suit her well, then move on from there if able.

When her doctor said we'd be doing this, I blurted out loud that this was "scary," to which she kind of gave me a confused look. I just meant scary/exciting because of the WE DON'T KNOW WHAT WILL HAPPEN factor. Maybe she'll be just fine, or maybe she'll get sick again, which concerns me. When Sweetie went off her antibiotics and onto supplements, she did, in fact, get sick again. At which point her supplement dosage was raised a bit, then her medication changed because of lack of availability of that supplement, and now here we are, doing well on the Wormwood at a specific dosage. To change that up, just a little bit, is a bit scary. I have it in my brain that, it seems, as long as she's on something - and at the right dosage - she's fine. To think about reducing, and ultimately taking supplements away all together - well, I just don't know how that will all go. Apparently, though, we will see soon enough.

Here's hoping that Sweetie will remain in good health and not fall back into any of her Lyme-y ways. Onward and upward is the name of the game.

Let's go!

Monday, February 11, 2013

There's "Something" About Us

So, over on the other side of the blogospere, I have this other little blog. It's called Sweetie & Me and it's all about, well, Sweetie & me. I started it, jeez, almost 8 years ago, mostly as a place to discuss my being a disabled mom (I have spina bifida) raising my healthy and active daughter. You see, there are very few - I mean really very few - resources out there for women with spina bifida wanting to have a normal pregnancy and child raising experience. At least that was the case back then. Unfortunately, that still seems to be pretty much true. I just wanted to be that one voice in the crowd that people could quietly hear and listen to, question and feel connected to, if they wished. So I started the blog and began to write.

But somewhere along the way - and not altogether that long after starting the blog, even - I just started writing about, you know, "stuff." Mom stuff, kid stuff, funny, poignant, infuriating, normal stuff. Which, of course, is all "normal" when it comes to being a parent. So, in essence, my blog pretty much became a parenting blog, - or, really, a Sweetie blog - more so than a disabled mom/healthy kid blog. Because, in my world - in my family's world - it's all normal. It's our normal. Things weren't happening or not because of my disability. Life was happening, all the time, no matter what my body could or could not easily do. It's just - life.

And so, these nearly 8 years later, I'm still checking in - though, granted, not as regularly as I'd like - to write about life. I'm still loving the writing and happy to have a place to share. But, no, I can't really claim that it continues to fit my original purpose for creating the blog in the first place.

Now, cut to Jan. 1st, 2013. A date I decided was going to be the start of "my year." I have been taking care of Sweetie and Hubby all these years, while quietly dealing with, downplaying and/or outright denying any physical issues I'd been experiencing over the years. Yeah, I hurt. Sure, I'm tired a lot. No, that's not the end of my "issues" list, if you want to know the truth. But it's nothing. No complaints here. Keep calm and carry on.

So - 2013. My year! This meaning lots of doctors appointments on my schedule. I've seen my GP, my neurologist, a dermatologist, the eye doctor and a physiatrist. I've had tests done, and have more on the schedule. I am getting all checked out! Time to admit I'm not feeling my absolute greatest and figure out what's going on and how to make it all better. Time to admit life isn't as "normal" as it once was for me. Things are harder to do. Things do hurt. Things just don't feel right.

Time to look at my other blog and see how little I've written about how I'm actually feeling and moving - topics that would fit oh so well into the original purpose of the blog - compared to how much I continue to write about Sweetie and all her "normal" shenanigans. Sweetie's funny and smart and great and interesting! Who cares about the comparatively minor inconveniences of my sore and tired slowing down body? No one! Not relevant!

Well, yes. Relevant. Completely. Duh.

And then there's the physiatrist appointment I just had. A physiatrist! I had never in my whole entire life heard of such a doctor, but now wonder why I have not had a physiatrist my whole entire life. A doctor who treats disability and pain resulting from injury or disease, especially related to spinal cord issues?! Dude! Where has this been all my life?!

The doctor himself I thought was, um, strange. Spastic, nervous, mild mannered. Odd. But also completely intelligent and intuitive - the guy knows his stuff, even if he's not very good at expressing it.

So what has he determined are my issues, causing my constant low back pain and a left thigh that goes numb after standing or walking on it for 5 minutes or so? Well, that would be bursitis in my hips, and arthritis in my back - more specifically, spinal stenosis.


And I've hardly ever mentioned any of these issues on my other blog. In passing, maybe, sure. But nothing that anyone would remember, I bet.

Not so good for a blog that's supposed to discuss my challenges as a disabled mom!

Obviously, I'm not a complainer. Or else I'd be writing about my issues all the time. But no one wants to hear that!

Leave it to this intuitive, strange doctor to tell, right away, that I'm not a complainer. How true, how true. I found myself telling him about the rest of my family, including how my daughter doesn't complain at all. I also had to admitted to hating this - it's not always a good thing to have a kid who doesn't complain, you know.

"She gets it from you," he said.

"Bu..." But she has something to really complain about!, I just about nearly said out loud.

Sweetie has Lyme, I wanted to say. She totally could complain. But she doesn't. But that's, probably, you know, because by all rights, she actually feels pretty good on most days. Huh. I guess she's okay.

Just think of that! I was all ready to say how much my daughter has every right in the world to complain a lot - a child who, yes, has Lyme, but really seems to have it pretty much under control for the most part. As opposed to me, who I feel comparatively has no right to complain... yet I have real aches and pains and fatigue and other assorted issues every single day.

I didn't tell him any of this. But, obviously, I've been thinking on this craziness ever since.

The reality of my falling a lot also came up with the physiatrist, as well. I, as always, tried to brush it off, laughing that I fall so much, I'm a professional. I fall so much, I know how to do it as safely as possible. "Yeah, but falling's not good!" he pointed out. Along with falls in general just not being good for me, he pointed out that I'm getting older too, so age, factored in to what I've already got going on, really makes the effects of falls challenging for me. I admitted, well, yes, I have found that it's harder for me to recover from falls these days. I can feel the soreness, for instance, the next day after a good fall, when before I could just get up, brush myself off, and forget all about it.

Could it be that simple acts like merely walking around are major accomplishments - or challenges - for me? Am I way worse off then I've ever believed myself to be? Sure, getting real answers to my aches and pains is, in one way, helpful, because now I can work on fixing them. But at the same time, I kind of now feel like I should have been doing things differently my whole life so that I wouldn't have wound up like this by now. I'm having a real conflict with the idea I've grown up with of, "well, nobody ever said I couldn't, so I'm at least going to try - I can do anything I set my mind to," and what I feel I need to consider now, being "you've really got some things going on with yourself, so maybe you need to think and take care more to live a more protected life."

I don't want to complain. There's no point in it, it doesn't change anything, and it just annoys anyone listening to it. Complaining isn't my style. But there is something to getting that sort of vindication. Being able to say, "See? I am in pain and there is a reason why."

But there's also something about now being made to feel like I'm "sick" or diagnostically limited in ways I wasn't just a mere few days ago. Before, I carried on through my pain. Now, I know what's causing the pain - what's physically happening in my body to create the pain - and I feel the need to take better care of myself. Which, you know, isn't such a bad thing. It's just - being more aware of my body and why it's feeling the way it is, and trying to take care that I don't do anything to make it too much worse too soon.

And then I think, again, of Sweetie. She, being the non-complainer that she is - like me. She, yelling an annoyed "I'm fine!" when I see her bump her head and instinctively ask, "Ooh! Are you okay?!" She, doing the same when she falls down a few of Grammy and Grampy's (carpeted) stairs. No matter what, always answering with an annoyed "I'm fine!" and an underscored tone of "Jeez! Leave me the heck alone!"

Wow. I think I get it.

Just like I am now feeling this low lying (and mostly self-inflicted) baseline of "something's wrong now. something needs to be more careful now. I am not who I was before, even if I feel like I am." Sweetie must feel the same. No matter how she's been actually feeling, as a general rule, over the past 2 years or so, ever since she's gotten a diagnosis of Lyme Disease, "something" has changed. About how she sees herself. About how others see her. And its no fun. Why can't things just be like they were before.

Vindicated. Validated. Listened to. That's how I feel now, in the end, for myself. Which feels pretty good - for me. But, yeah. I get it now for Sweetie. She just wants to be regular. Just wants to go back to normal. Just wants to be treated like a regular kid. Not always being asked how she's feeling. In fact, she's developed such an aversion to that, that she's developed a strong dislike to being asked how she is when any change occurs - health or bodily harm included. "I'm fine! (just leave me alone!)"

Yep. Message gotten. But still. Sorry, Sweetie. You are going to have to accept the fact that people care about you. Accept it when people are concerned for you and only want to make sure that you are feeling well and/or haven't hurt yourself while participating in any regular, "normal" Sweetie-style activity. Go! Be you! Have fun! Do every regular kid thing you set your heart on, because you are and you can.

Just be careful and accept a helping hand, a concerned person, a loving heart when offered.

You are loved, Little Girl. And we will never stop caring about how you are - Lyme Disease or not. We just want to make sure you stay as healthy and injury free as possible as you go about your regular days.

And, yeah. Maybe I'll start writing more about me over at Sweetie & Me to also show the world how I manage and get through my regular life with a few more added physical challenges than before.

Monday, January 7, 2013

The Daily Question...

...Asked twice a day.

Other than this question, you'd have no idea Sweetie was anything other than a healthy little girl.

And, by all rights, she is a healthy little girl. (Knock on wood) our whole family has not yet been felled by the dreaded flu this year. I'm still getting over a bad cold from more than a week ago - but both Hubby and Sweetie has managed to avoid it. She's only missed one day of school for illness this year (and, yes, that was a Lyme day). Sweetie is, by and large, one healthy kid.

One healthy kid that we ask twice a day, "Did you take your medicine?"

Before school in the morning or leaving for adventures on the weekends - "Did you take your medicine?"

Before bedtime every night - "Did you take your medicine?"

Every single day, twice a day, for the last 9 months or so - "Did you take your medicine?"

The medicines have changed some over those 9 months, but always the question remains - "Did you take your medicine?"

No matter how normal and healthy and average and regular my Sweetie seems - to us, to her, to everyone around her - we are oh so lucky to get this twice-daily reminder that, "well, yeah, she's only normal and healthy and average and regular because she takes her medicine as prescribed."

Take away her medicine, and we're back to the vomiting. Back to the threat of the "just cyclical vomiting" becoming something so much worse than "just cyclical vomiting."

And that's truly how it seems to me. As long as she's taking something for it, her illness stays away. Take the pills away, change it, lessen the dosage, whatever - and the Lyme is only so happy to show its ugly little head again.

Currently she's on the herbal supplement Wormwood Combination. This, after being on the herbal supplement Artemisia for a month or so. The switch came about because I only attempted to refill Sweetie's Artemisia once she took her last pill of it. Only her doctor's office - which is the only place around who had it - was closed that day. I had to get Sweetie something, though, so I went to the local health food store - a store run by a kindly older guy who's been managing his own Lyme disease for years now - to see if they carried Artemisia. Once I told the owner what I needed and why, he directed me to the Wormwood Combination, as they didn't carry the Artemisia. I bought it, and email Sweetie's doctor about this new supplement before giving Sweetie any. Turns out Sweetie's doctor was very pleased with the Wormwood purchase, and she advised me of the correct dosage for Sweetie. As it happens, the Artemisia I had planned to get at the doctor's that day was no longer being produced by that company the office used, so we were going to have to switch Sweetie to something else anyway. It all works out in the end.

So, now Sweetie's been on the Wormwood (1 pill in the morning, and 2 pills at night for her) for the last month or so, along with her ever-present Immune Boosting gummy (over the counter) we've had her take for a year or more now. And we've also reintroduced a Vitamin D3 capsule into her daily arsenal of health-boosting pills, as Sweetie's D3 levels were low when checked last March. She should have been on this continuously since then, but we ran out at one point and didn't have the funds to restock at the time - then forgot - and so it goes. Now we are restocked and on the right path again!

One supplement we have let slide, finally, is Sweetie's probiotic pill. We had a large supply of the probiotic left after Sweetie stopped taking the antibiotic. So she continued with it for at least a couple months after switching to the herbal supplements. But now the supply is gone and we, intentionally, haven't restocked. We figure we've done what we needed to do to keep her gut flora as healthy as could be while on the antibiotics, and for a time afterwards, and now she can be done with at least that portion of her daily regimen. It's been awhile now that she hasn't taken any probiotics and she's been well and feeling good. Thank goodness!

We continue to watch what she eats, but are nowhere near as vigilant as we probably should be. We do buy a gluten free bread for her school sandwiches. And if we notice she's already had a few "bad" snacks in a day (gluten/sugar), we may forbid her to have another. But for the most part, she eats what she wants and what she's given, which isn't so bad compared to the junk "most" kids eat, and she feels good. Or at least she claims to, as that's what Sweetie does. But, no. I believe her now. She feels "great" and I've seen no signs of her keeping secret any sickly feelings she may encounter. For the most part, she really is good.

Like I said, if it wasn't for that pesky little daily question we need to ask and she needs to deal with every day - "Did you take your medicine?" - you'd never know that anything's wrong with her at all.

Only 3 more months of this particular dosage of medicine and then... continued medicine, but we'll attempt a smaller daily dosage and see how she takes to that.

Keep taking your medicine, Sweetie, and you'll keep being the picture of health that you appear to be.

Be thankful for these supplements that keep you feeling as well as you do. I know I'm thankful for them every single day.