Super Sweetie to the Rescue!

Okay. Now I'm getting really annoyed.

It's not that I want Sweetie to feel bad. I'd just like for her to tell me if she does. And when she looks sickly, and acts tired, whiney and otherwise unlike herself, but still says she's "great" when asked - in an annoyed, exasperated, "leave me alone, Mom!" kind of way, no less - well, I get annoyed and exasperated too.

It's like I have to find different ways to word my inquiries and tiptoe around the obvious.

Not that I'm constantly asking her, mind you. I know it may seem like that, since I seem obsessed with her responses. Like I said, I don't wish for her to feel bad. I just wish she'd be upfront and honest about how she is feeling when it's apparent to me she's not feeling her very best.

Last night at dinner, Sweetie asked if she could not finish her meal. A meal she's typically loved in the past. We allowed it, but wanted to know why. Was she already full? Was it too much of the same thing? Did it make her tummy hurt? No! She didn't know... Yeah, she guessed she was just full.

Then she commenced with lying down on the floor, with a pillow and blanket. Hmmm.... Okay, I could see if she was cold. But the lying down too? Not typical.

A bit later she and I were in the kitchen so I could give her her evening dose of probiotic powder. Out of the blue, she says, "I think it was the cheese at dinner."

What's that? An admittance? Someone's not feeling so good?

Yup. Sweetie admitted that she was feeling yucky, and she thought it was the (little bit) of cheese on her dinner that did her in.

Maybe. At least she was letting me know what was going on with her. Kind of.

Then I had a talk with her. Like her Daddy and I have had a talk with her before. She needs to tell us how she's feeling. If we know, we can help her feel better. If we ask her how she is, fine - she can say she's great. But if we ask her how she feels, we want to know about aches, pains, tiredness, whatever. Furthermore, she needed to know that it is not a bad thing to feel bad. It is not a sign of weakness. It is okay to admit to being something other than great! Please! Help us help you!

I also realized that yesterday marked 4 weeks exactly since Sweetie started her antibiotics. And I remembered her doctor telling me that Sweetie is apt to experience the Herxheimer Reaction approximately once a month while she's on her meds. Hmmmm... it didn't seem to me like Sweetie Herxed when first starting her medicine. Yeah, she was a bit whiney/weepy/tired/not really herself a few days into it. But that's all.

The Herxheimer Reaction - as best I can describe it to my own understanding - is what happens to late stage Lyme Disease patients when they start on antibiotics. The antibiotics immediately start to work, killing off the Lyme bacteria. That bacteria's "killing off" creates toxins in the body - toxins that want to get out! Basically leaving the person feeling miserable for a day or so. The killing off brings all the hidden symptoms of Lyme that have been just hanging out in the body to the forefront, making the person sick.

And since Lyme regenerates itself every month or so, this killing off and resulting Herxing also happens every month or so.

Huh. Sweetie was now whiney/weepy/tired/not quite herself! And the night before too! Just like she was a month ago!

Voila! We've got Herxing - Sweetie style!

Realizing all this, we told Sweetie last night what Herxing is and what it means - that her medicine is working and killing the bad Lyme bacteria in her body.

"So it's actually good to feel bad! It's like your body is being a superhero now - getting rid of the bad guy!" (a great analogy for our Sweetie to relate to, as she used to play and imagine herself as Super (Sweetie) all the time when she was younger.)

In the end, I told Sweetie that if she still couldn't bring herself to admit with words when she feels bad, then she and I (and Daddy) are going to have to work out a secret code that gives us the information we need instead.

I think she's still considering what that code could be. But she does own her very own Super (Sweetie) cape. Perhaps she'll put that on when she's feeling bad as her sign of how things are for her.

Or maybe, like I said before, I need to rephrase how I'm asking things.

"Are you feeling like a superhero, Sweetie?"

Yeah. I thought so. Let me see how I can help you feel better...

Relaxing

I'm currently reading Cure Unknown: Inside the Lyme Epidemic, by Pamela Weintraub. So is my dad, at my recommendation. This book simultaneously scares me to death and highly intrigues me.

My dad - who is almost done with it, while I'm only about half way through - says he doesn't think I should be reading it because it paints such a scary picture of Lyme. No, I said. Yes, it's scary. But it's also really interesting. I'll keep reading.

His advice not to continue on reading made me think. Hmmm.... I'm actually a whole lot more relaxed these days than I had been before Sweetie's diagnosis.

Before, I felt like a crazy, anxious person - sure that something was not right with my daughter, yet surrounded by medical professionals who assured me she was just fine.

Now, with her awesome new Lyme literate doctor, I've found someone who not only listened(s) to me right away, but immediately saw the pale, dark-eyed, not-quite-right look of Sweetie and knew from her gut what the tests she ordered would find - Sweetie is not rid of the Lyme we treated last summer.

Of course, that diagnosis of late stage Lyme is a tough one to hear. So much uncertainty lies ahead of us. Will she be able to kick it once and for all? While that may be doubtful, anything can happen. We at least now know for sure what we are dealing with, and are treating it correctly with a doctor who's observant enough to notice Sweetie's little improvements or steps backwards and brave enough to advise us on the proper steps to take to keep Sweetie moving forward as healthily as can be.

Sweetie's case, compared against the case stories I'm reading about in the book above, also gives me a little piece of mind. The cases in the book are just plain awful. Miserable, terrible stories of the extreme illnesses that can strike a person with Lyme down where they stand. And then I look at Sweetie. And she's doing pretty darn good. Her worst symptom - cyclical vomiting - is, in the grand scheme of things, a pretty manageable thing. So she throws up every once in awhile! We can handle that! Not to mention (knock on wood) that she hasn't even had this problem since February!

Her doctor tells me that Sweetie shouldn't at this point get any worse with her symptoms. Sure, she could relapse. Sure, a different symptom could crop up. But she shouldn't fall to any of the extreme situations I've been reading about. She's being treated now, appropriately, aggressively. She's eating a healthy, anti-inflammatory diet (no grains, no sugar). She's taking her antibiotics and her probiotics, spaced out appropriately so neither one cancels the other out. We are doing all great things to help her along. As I see it, she should only improve at this point. Maybe maintain? But, no - improvement is where we're headed now, I can feel it!

So, while we do in fact have our late stage Lyme diagnosis for Sweetie, and Lyme - "the great imitator" of diseases - is notorious for being a tricky thing to tackle - I'm happy to find myself much more at ease these days, knowing we have the right doctor behind us and realizing Sweetie, comparatively speaking, is, in fact, doing pretty darn great in spite of it all.

We will survive!

Life Sentence

Amazing Story One: How I Became a Super Hero

By Sweetie

At first I was a scientist making a stress ball with rubber from space. (I did not know that when you squeeze it, it explodes.) The stress ball gave you super powers when you squeezed it, and when you squeeze it again, your super powers go away.


Then a whole entire week later I finally finished it. I tested it to see if it worked. When I squeezed it, it did give me super powers... but then it exploded. Now I am, and will be a superhero for the rest of my life.

The End. 

_______________________________________________________________________

Hi there. My name is Amy and I am an over-dramaticist. I look for meaning in everything, especially when none is implied. It is a sickness. Please help me...

(Is probably why I love(d) studying literature so much. Once those academic types make you understand that Mr. Rochester's name sounds like a harsh, stoic, stone-like name - thus indicating the very character of Jane Eyre's love interest - well, there's just no turning back. You see it everywhere.) 

Hubby and I met last week with Sweetie's teacher, guidance counselor and school nurse to establish a 504 Plan for her. This was at the suggestion of the school nurse, as she anticipated with Sweetie's chronic Lyme Disease diagnosis that there may be times when Sweetie feels ill and may miss several days of school in a row. With the 504 Plan, we would ensure that she'd not be penalized for days missed and would get extra time given to her for assignments due, if need be.

Basically, we signed off on what any reasonable parent should do anyway - get their kid's school work from the school if the kid misses more than 2 days in a row from class, to be done at home. Hubby and I don't feel, at this point, that Sweetie will ever really need this plan, but, you know... it's there if she does. They're looking out for her, which is nice.

Anyway. 

While I was reading over the 504 contract, Sweetie's teacher randomly pipes in with, "(Sweetie) says that she'll have Lyme Disease for the rest of her life." To which Hubby and I kind of looked at her like, "Well, yeah. Pretty much. No one really knows, but, yeah..."

I just thought it was a really random thing to blurt out while we were all otherwise being silent and trying to read the paperwork.

Her teacher did go on to say that, at the same time, Sweetie is not stating this in any sort of depressed or saddened way. She's stating it plainly, as breezily as someone would state that they have curly hair. To which Hubby and I looked at her like, "Well, yeah. That's Sweetie. Doesn't let anything get her down. Great all the time, and all that."

At any rate, that was pretty much the end of that exchange, other than the fact that we did express that, really, it depends on who you talk to to know if Lyme is truly chronic or not, or just how long a person will feel the effects of it. With Sweetie's treatment, we are hoping to get her to a state of prolonged remission, if not complete recovery. But, yes, we haven't shied away from telling her what we know about late stage Lyme.  It could be that she does have to deal with this for the rest of her life. 

But, me being me, I kept thinking about this for the rest of the day. Wondering if Sweetie was truly worrying about suffering from this disease for the rest of her life.

That night, at the dinner table, I tried to make what we know about Lyme more clear to Sweetie, telling her that no one really knows if you can get rid of Lyme once it's in the late stage phase. It may very well be possible, and that's why we need to treat you with so much medicine for a long time now. You could also get to a point, we told her, where you technically do still have it, but you aren't bothered by it anymore, or as much. But as far as we know, it's also not very probable that you'll ever be completely rid of it. Sweetie said she didn't realize all this and seemed comfortable with my hopefully better explanation of things.

Then, some days later, she brings home the above Super Hero story. A story, we found out upon questioning her, that was not assigned at school. She just felt like writing it one day while at The Boys & Girls Club.

It's a great story, isn't it?! I LOVE it! But - again, me being me - there's one phrase in there that particularly catches my attention... the fact that she'll now be a super hero "for the rest of my life."

Just like how her teacher said Sweetie described her situation with Lyme - a condition she'll have for the rest of her life. Here, she's written a story where she accidentally finds herself having to be a super hero for the rest of her life (after squeezing a stress ball, no less. Oh the field day I could have with that if I let myself!) A super hero able to fight all the evil in the world, one can assume. Hmmm... interesting...

"The rest of my life" - it's just not a turn of phrase I've ever heard Sweetie express before. Sweetie is a very "live for the moment" kind of girl. You ask her if she's excited for a friend's upcoming birthday party and she barely remembers that it's even on the horizon. But once that party is here, boy, she lives it up and has a grand ol' time. She gets deeply involved in her imaginative play and upset when our plans have to take her away from it for awhile - not understanding that it won't be all that long before we're back and she can continue on as she wishes with her creative story building and playing. She's just a "now" kind of kid. And so for her to be pondering at all the concept of something being for the rest of her life - and not the best of things, either - well, I just take notice of that and wonder what's really going on in that head of hers.

You know, all this time over the last several months that we've taken her to the doctor, changed her diet, and had to have her X-rays and blood draws taken, we've always told her we have to do all this not fun stuff so that we can get some answers and help her feel better. To which she always has simply said, "I know." But, as I described in my last post, if we ever directly ask her at any given time how she is, how she's feeling, the answer is alway, always, "Great!" 

Funny - to me, anyway - that she has never denied feeling bad when we tell her we're looking to make her feel better. But then she never outright states that she's feeling anything but great. Weird. Another thing for me to wonder, what exactly is she thinking or feeling.

Like I said, though, Sweetie really is a "live for the moment" kid. A very go with the flow, no worries sort. (Ha! That strikes me as extremely funny right now when I sit back and remember just how rigidly stubborn and "follow-the-rules"-like she used to be as a toddler and Kindergartener.) She plays her games, creates her universes, and has a wonderful little care-free life. 

Maybe, now that she has the Lyme diagnosis, it's just that she's beginning to realize how little hiccups and issues can creep in to make her world that much less care-free. 

Knowing Sweetie, though, she'll (super) power through, pass the bad thoughts by, and keep on living her life just the way she's always wanted, and will - for the rest of her great life!

I'm Great! Now Leave Me Alone!

For those of you readers who are just now tuning in to any of my writings about Sweetie, there's something important you need to know...

Sweetie is always "great!"

As in, you ask the average person you happen to greet on any particular day how they are and you will most likely get something like an "I'm fine" response. But if you were to ask Sweetie that same innocuous question, she will undoubtedly tell you, "I'm great!"

Hubby and I have no idea where she ever got this. She's been saying this for as long as she could talk. We certainly didn't teach her this. It's just a Sweetie thing. Sweetie is great. Always.

Even when sick, it's not unlike Sweetie to still tell you she's great... just maybe not with as much as enthusiasm as other times.

And to the uninitiated, Sweetie's greatness always seems to be a big thrill to the person who asked her condition in the first place. Great? You're great? That's great!

But to me... yeah, sure, it's super cute and very positive and totally optimistic. But, you know, a person just realistically can't be that great all of the time. Tell me your true feelings. Let me know what's going on with you. You are not required to be great all the time. In fact, I'd rather you not be. It feels too automatic to me.

The average person's "I'm fine" is definitely an automatic response. But fine is.... well, fine. Not great, not terrible. Just fine. Nothing to draw attention to. Fine. But if you're going to tell someone you're great? Well, then. You better have some evidence behind that to back up your extreme claim.

I'm just sayin'...

Today, my suspicions that Sweetie's greatness is, at least sometimes, a cover up, were proven. We were on our way to my in-laws after church to celebrate an Easter brunch with the family. During the children's activity at church, where the kids were making masks out of paper plates, Sweetie accidentally stabbed two of her fingers with scissors, cutting herself pretty badly. But by the time we were off to Grammy and Grampy's, she was pretty well calmed down, doctored up and trying to regain composure.

In the car, I was talking with Sweetie about the possibility of family asking her how she's feeling... not so much about the injury she just gave herself, but about her recent Lyme diagnosis. Having witnessed Sweetie get a bit snippy snappy with me and others in recent weeks when asked how she is, I wanted her to be prepared for these type of questions, to realize that people were just concerned and possibly ill-informed about what it feels like to have Lyme, and to simply answer any such questions politely and simply.

To this, Sweetie - much more concerned at the moment with her finger injuries than anything else - asked her Daddy and me a very interesting question. She wondered if it would be okay if, when people asked her if she was okay, could she answer, "Kind of."

Basically, she was asking our permission to give an answer other than "I'm great!"

"Of course you can say that!" we told her. And, in talking with her a bit more on this subject, she admitted she'd like to give the "kind of" answer so as to not make a big deal out of her injuries. So that people would leave her alone.

Aha! I see!

As I said, Sweetie has at times within the last several weeks been pretty snippy with me if I dare ask her how she is. "I'm fine, mom!" or, of course, "I'm great!" are the exasperated responses I tend to get from her. Sure. You look really tired. You're very clingy/whiney. You just said a little while ago that your tummy hurt or you had a slight headache. But okay, if you say your great, you're great. I'll leave you alone.

And another thing... at our church, there's always a time toward the beginning of each service called "Joys and Sorrows" - a time where you can go up to share a joy, sorrow or concern with the rest of the congregation. Since getting Sweetie's official Chronic Lyme diagnosis, I've really felt like this is something I'd like to share with the congregation. To have them all be aware and to have their thoughts and prayers supporting us just feels to me like something I'd like behind us. Even thought I hate public speaking. Even though it literally scares me to go up and say anything to them all. Even though I don't ever get up to share joys or concerns... this time, it just feels right.

BUT... I informed Sweetie that I was wanting to do this last week just before church began. She forbade me to do it. Insisted I not get up. She, a Sweetie who herself has no problem getting up in front of everyone and sharing her own joys every now and then. But, no. Not this concern/sorrow. We shall not speak of this. Promise you won't, Mom.

I promised. That time. But today I asked her again if I could share. No. You promised. Don't do it.

Fine.

If I wasn't clear on it before, I do see now exactly where she's coming from. With all of it. Her exasperation with my questions. Her not wanting our church congregation to publicly know. Her constant state of greatness, no matter what.

She doesn't want anyone to make a big deal out of it. She doesn't want anyone to see her any differently than her usual "great!" And, admittedly, most of the time she is feeling what us mere mortals would label as "fine." So basically, she's just wanting to uphold her status quo and be left the heck alone!

All this is well and good. I get where she's coming from, for sure. But Hubby and I have told her in recent days that he and I will probably be asking her more often how she's feeling, either because she's acting differently or looking like she's not feeling well, and we just want to be sure everything's okay. At the same time, we told her that she needs to be honest with Daddy and I about how she's feeling. With everyone else, she can be "great." But with Daddy and I - or whichever adult is caring for her at the time - she needs to share if she's feeling anything less than that. We want to know if she has a headache or stomach ache or is super tired or whatever. We need to know. With us, you can be yourself - great or not. And we can help try to make it better.

You are the greatest, Sweetie. No doubt about that! Daddy and I just want to be sure, if maybe you're not feeling your best from time to time, that we're aware and can do everything in our power to bring you back to where you should be... absolutely GREAT!