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.

Awesome.

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.

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.

Decisions, Decisions

So, yes. As I ever so very side-note-ish-ly mentioned in my last post, Sweetie is back to her old ways.

At least that's how it appears. Based on one day. Well, one morning, actually. But I know these things, man. I'm tellin' ya.

How else would you explain that my dear darling Sweetie has been vomit-free since February - right before starting on long-term antibiotics for Lyme. Then, just 6 weeks after coming off the drugs, there it is again. No other symptoms. She feels much better shortly afterwards. Just throwing up. Just like before. Yeah - it's the Lyme.

Because of this, her Artemisia is now a double dose. One in the morning and one at night. We're hopeful that this will combat her symptoms. She has another doctor's appointment at the beginning of January, but I'm to call the doctor in the meantime if Sweetie vomits again. If so, we have some decisions to make. Go back on antibiotics? Probably. We'll see. Let's not assume right now that that's even a probability, m'kay? Time will tell.

And while I do appreciate those who are trying to help, I'm sorry, but I know my daughter and I know what we're dealing with. "Maybe it's just her system struggling with getting back to 'normal' after the antibiotics that made her throw up." Or "maybe she was overly excited about her 1st DI meeting of the year that day she threw up", which had her end up sick. Everyone seems to know someone, too, that "just throws up." Maybe it's not Lyme - it's just something Sweetie does. And the headaches she's experienced since too? Well, one time was probably due to exposure to loud noises, right?. Another time - well, she was probably hungry, I bet. And anyway, recent reports have shown that chronic Lyme really doesn't even exist - it's a new tick bite every time the symptoms reappear. Obviously I'm just a terrible parent for not noticing all the ticks crawling on and devouring my child every single day.

Okay, maybe no one has actually said that last one to me. But, yes, that's what I heard in my head when that article was brought up. You're daughter attracts ticks and you suck for not preventing it.

Like I said, I know everyone is just trying to be helpful and show me how maybe, just maybe, we're actually dealing with common, everyday kid stuff and not big scary Lyme. And I'll even grant you that teeny tiny minuscule possibility. But in reality? I know it's the Lyme, people. My daughter has Lyme and the way it presents in her is via her gastrointestinal system. She was sick, she was on meds and not sick, now she's on herbals and is sick again. Lyme.

Hopefully the upped dosage of the Artemisia will be the answer we need. Because if it comes down to the decision to put her on antibiotics again or have her throw up every 4-6 weeks... I don't know. I'm almost thisclose to wondering if having her be sick every once in awhile might not be an okay thing to deal with. I mean, seriously. Yes, she feels really yucky before and while she's throwing up. But shortly afterwards, every time, she's up and good and even great! Back to her old self. As is the case with all the days and weeks between each sick episode. She's fine, until she isn't for a few hours, then she's great again. What's wrong with just letting that be the way of things for her? In some ways, doesn't that beat out ravaging her system with long term doses of heavy drugs? Long term doses that may in fact "ruin her" for antibiotics in the future? I mean, what if she has strep throat or something at some point, but now she's unable to fight it with antibiotics because her system is so "used to" the medication, it doesn't recognize it as something that will fight other infections? All because we didn't want her to throw up every once in awhile but otherwise be good.

But, I know. The answer is to go back to antibiotics if we need to. If we don't - sure, she's "just" throwing up now. But, unmedicated, it can and most likely would get worse. Worse symptoms. Longer periods of feeling sick. Just not good in any way. Best to fight the smaller issues so that the bigger ones never take hold. And also, who's to say Lyme isn't effecting Sweetie other than her monthly throwing up? With the little amount of talking Sweetie does with us concerning how she's feeling, contradicted with the sickly way she sometimes looks (sometimes worse than other times), I know we've got to fight hard now with whatever ammunition available to us.

Then again - we also have to consider the smarts of our old friend Lyme. Yes, Lyme is smart. It recognizes when Lyme fighting meds are in the system and, in fact, shields itself and hides from the drugs. Not getting killed off from the drugs. Actually hiding and hanging out in the system until it's "safe" to come out again. And when that person is off the medication? Well, the Lyme recognizes this and comes out to play. Which seems to be our case here with Sweetie. The Lyme realized there was no more antibiotics in Sweetie's system, so it came back out and made her sick once again, just like it did before. So what if we put her back on antibiotics? Isn't the Lyme just going to realize this and hide again? I would think so.

The Artemisia is a great herbal remedy for Lyme, as I've been told. It actually recognizes that the Lyme shields itself and cuts through that shield to kill the bacteria. So, yes. By all rights, as long as Sweetie has the right dosage of Artemisia in her system, one would think that it would effectively take care of the Lyme for her.

Then again, we are also assuming that Sweetie is dealing only with Lyme and not any of the co-infections. Or maybe her doctor is considering co-infections as well and knows that the Artemisia is the proper supplement to take care of whatever tick borne diseases we're dealing with. I am not an Artemisia expert by any stretch of the imagination but I know Sweetie's doc is a fantastic Lyme Literate source. Listening to and trusting her is really the best thing we can do for Sweetie right now.

I suppose I also haven't considered that maybe, if the Artemisia still proves ineffective, there's yet another herbal remedy we can turn to next instead of heading straight back to the antibiotics. Again, this is something to talk about with Sweetie's doctor, if need be.

For now, I suppose all we do is wait. If this is the Lyme talking to us, then Sweetie is "due" to be sick again anytime between 2 - 4 weeks from now. Happy Birthday and Merry Christmas to her!

Fun times ahead, indeed.

YOU Are Not Your Self

I wrote the following post earlier today for my other blog, but thought it would be appropriate to post here as well. It's something Sweetie said... see if you can find out what I'm referring to. It shouldn't be that difficult. Shall I say, I just found it very interesting to hear what she thinks of when she thinks about herself.

(Oh, and BTW - latest LLMD appointment had last week. Bumped up Artemisia dosage by 100% because - guess what?! A couple Fridays ago Sweetie was sick again! Throwing up. No other symptoms - just vomiting. Awesome. Just like old times. Here we go again...)

--------------------------------------------------------------

"Sweetie, do you want to get dressed up and wear a dress or skirt because it's Thanksgiving? Or do you just want to wear regular jeans and a shirt?"

"I don't care. You choose."

I picked out a cute "dressed up" outfit, complete with coordinating shirt and skirt and pretty blue leggings. She got many compliments and, I think, felt good about how she looked.

But, honestly? She really doesn't care about things like clothes. Dress her up - she's happy. Dress her down - she's happy. S'all good.

Which, you know, is good!

Apparently, though, she also doesn't care about presenting herself appropriately when she is dressed up.

- "It's not 'dress-up' day, Sweetie."

- "Sweetie! Sit like a lady!"

- "Sweetie! Is that how you're supposed to sit on the couch when you're wearing a skirt?"

It seems like we were constantly reminding her to sit like the young lady she is. Her response?

"I'm not a lady! I'm a half tomboy."

At the end of our visit with Grammy and Grampy, when just we 3 and Grammy and Grampy were left, this whole subject exploded into a full-out discussion where the following points were discussed:

* Grammy used to be a tomboy.

* Arguments from Sweetie that "this" half of her (the right half, for instance) was a tomboy (and therefore 'allowed' to be messy) and the other half of her was girl.

* Just because you don't like certain things that girly girls typically like, and you do like certain things that boys typically like, doesn't mean you are or aren't a girly girl or a tomboy.

* What's wrong with being a girl anyway? Girls can do anything!

* No matter what you say about yourself, you still have to be decent and present yourself appropriately.

* Why does it matter so much to Sweetie to define herself as a tomboy anyway?

Afterwards... I don't know. At least she sat up. I think. It was a long day, and it was time for us to move on to the next Turkey Day Celebration.

On the way over to my parents', well... I'm sorry, but I couldn't let it go. I had to ask - "Why do you think it's so important to define who you are, Sweetie? For a DI kid, I sure am surprised you don't know by now that you are so much more than "just" a tomboy who happens to like some girlie things as well." (thus the "half tomboy" label) "What are some other things you could say about you?"

"I'm a girl who likes to play Legos who has Lyme Disease."

"Ooookaaayyy." (Daddy chimes in) "Yes, that's true. But that doesn't define who you are! You are creative and smart and fun and funny and crafty and in DI and..."

"Most ladies love to shop. But I hate shopping! Most women, you could say, love chocolate. I could take it or leave it. Most ladies loooovvvve shoes. I don't care at all about shoes! But I wouldn't say I'm a tomboy either. I'm me, and that's great! Celebrate who you are, Sweetie! Don't limit yourself with labels and definitions. Be YOU! Be Sweetie!"

--------------------------

In prepping for writing this post, I Googled quotes on defining oneself and being true to yourself. And I was surprised to see just as many quotes advising people TO define themselves as opposed to NOT defining/labeling themselves. And I suppose I see "the definers" point as well. Many of these quotable people were suggesting that one should define himself rather than be defined by society or what others think. When put like that - yes, agreed.

I also read that to give the advice "Be Yourself" is about the worst advice you can give to some people. I agree, it is rather half-hearted and vague advice. Just thinking back to high school yearbook signing... harkens of "never change" and "stay you." I mean, what did we mean by this? Nothing. It was just something to write that "sounded good." I think better advice might be to be the best version of yourself you can be. That way you are always reaching, always striving, always allowing for change and growth. Whereas to "be yourself," in its own way, is somewhat limiting and doesn't necessarily require you to grow into yourself - you're already there.

So, no, Sweetie. Daddy and I are not telling you to "be yourself." But we are challenging you to discover, appreciate and love being YOU! YOU are still growing, learning, experimenting, dreaming, creating. YOU are still working on your self, as all kids are. As all people should be, no matter their age. Your self is an ever-changing being, lead by your passions and interests, environment and beliefs, and more. Your self is someone YOU can and should always be working on to master...without ever actually mastering, as no human is ever perfect. YOU are full of knowledge and challenges, light and dark, creativity and questions, and so on. You be YOU! And don't let your self or anyone else ever tell you you can't be!

"Today you are you! That is truer than true! There is no one alive who is you-er than you!" - Dr. Seuss

Relative Greatness

So, before writing this, I checked back on my other posts here, just to make sure I'd not be repeating myself too badly.

And what did I find? That, um, yeah. This blog should pretty much change its name to "This GREAT Life." As in, Sweetie's always saying she's great, even though I don't believe that to be true as much as she claims. And also that it is my and Hubby's and maybe a few other random people's humble opinion that she is not the healthiest looking child. And, yes, I tell you about all this all the freakin' time.

Yet, here I am. About to do it again.

Take, for instance, Sweetie's 4th grade school picture that we just got a few weeks ago. Yes, she is smiling a way-forced/too big smile, which makes her look just silly. But beyond that, well... let's just say that the picture literally makes Hubby angry. He won't look at it again. He says it makes her look sickly and pale and just not "Sweetie." And... I agree. There's something about it - the way they had her torque her neck, or something - that makes her look old. Like, winkled-neck old, smiling-too-big-wrinkled-face old. And pale. And thin (yes, she's thin - always has been. But here she looks decidedly thinner). And weak. And, yes, sickly. Just not our Sweetie.

But beyond looking sickly? Eh. As usual, she's "great." And, in some ways, I agree. I mean, we're into November already and she's not yet missed 1 day of school. She's had a couple very minor colds, but nothing to keep her down. For all intents and purposes, she has, in fact, been great. Yippee!

But... I don't know. Is it a legitimate complaint to say my daughter is "only" sick-looking, and therefore sick? Therefore, something is still not right? Something still needs to be found and dealt with and fixed? Is she throwing up? No. Fevers? No. Fatigue? Eh - not that I have really noticed. Soreness? Again, not that I'm aware. I should be happy! But, really. She doesn't look right! Fix her!

In terms of how Sweetie is actually feeling, aside from the "great"s, I only get very brief glimpses into how she is.

She complains that she really wants/needs to have Halloween candy as part of her lunch because, before Halloween, turns out she was "always" tired at school. But ever since she'd been getting some Halloween candy, it wakes her up and helps her focus (or, such is her argument.)

She rides her bike 3 or 4 laps around our small cul-de-sac, but then takes a small rest because she says, matter of factly, that her arms are a bit sore.

We go to the cast party for the Oliver! production that she was just in, and she sits behind me, in the corner of the room, not out playing and socializing with the other kids. She says she's bored. I wonder if she's just not feeling up to playing (the party took place at the Boys & Girls Club where she goes after school everyday. She's very familiar with this place, is my point, and has made at least 1 pretty good friend while in the cast. Why not play with her? Why not go play Legos with anyone?! Get out there!)

This girl. She just has me in a constant state of wonder.

It's enough to make me consider stopping her over-the-counter immune-boosting gummies we've been having her take for almost a year now. Like, is there something there, just below the surface, that's not too bad, but yet is kinda screaming to get out? If she stops the gummies and allows her body to experience the sickness, to get it out, wouldn't that be a good thing? Who knows. (And who's to say those store bought gummies are truly doing anything much to cure/surpress any lingering illnesses anyway.)

I know. I know. I should be thanking my lucky stars that I don't have a complainer. Well, yeah, I kinda do. She can and does complain, and whine, about a good many things, actually. But how she's feeling is never one of them, ever.

Last Friday I thought I had an ingenious idea. I made "emoti-magnets." That is, smiley faces, about 15 - 20 of them, that express a whole range of emotions. Happy, sad, scared, sleepy, excited, angry, proud, etc... I thought these would be a fantastic way for Sweetie to show us what she's feeling, if she's not going to tell us. And - yes! She loves them and is more than happy, so far, to single out an emotion or two each day to represent what she's feeling. Yay!

But... we're finding that A) there aren't always the "right" emoti-magnets to represent how we're feeling (we all try to use them each day.) And, B) these are pretty much strictly feelings. Not health related. Although there are Sleepy, Tired, and Sick options. But nothing for, say, specifically a headache. Or an upset stomach. I noted that I would try to find some like these, but Sweetie says no. The "Sick" option is good enough for all those things. Fine, whatever. We'll see if she uses it, anyway. So far it's just been a weekend of Excited and Happy, what with her Oliver! show. Then a bit of Sad when the shows were done.

Another thing I wonder about is how much to heart Sweetie has taken something I said rather off the cuff several years ago. I think, at the time, I wrote about this on my other blog. But not sure I've ever mentioned it here yet...

It must have been school shopping for 1st grade. She and I were at the mall with Grammy, and Sweetie was complaining that she was tired of walking. She was very whiney. She didn't want to walk anymore. She said her feet hurt. Wah, wah, wah.

Finally, I had had enough of it. I bent down to her level and I let her know quite simply that she needed to stop with this. I told her that if anyone had a right to complain about all the walking, it was me. My back hurt and I didn't want to do it either - but I'm not complaining. You, I told her, have no right to complain at all!

And then - she didn't complain again.

Simple enough. But I wonder if my words stuck, even after all this time. I know that sounds pretty ridiculous, on one hand. But on another, I do know for a fact that way back in Kindergarten Sweetie made up a huge lie of a story about something that happened one particular day at school. And when I found out that it was all a lie, I got mad. Really mad. She was angrily sent to her room and told to think about what she'd done. To this day, I know my Sweetie hates lies. She won't tell them and doesn't like to hear that others have. And if I were to ask her if she remembers that day back in kindergarten when she got in so much trouble for lying, I have no doubt in my mind that she would not only instantly remember, but she would also get upset about it and mad at me for making her recall such a bad memory.

My point - Sweetie remembers these types of things. Perhaps my stern words saying "you don't have the right to complain about how you feel - I do, and I don't" have stuck with her all this time. She knows I'm in pain everyday. So, to her, she's "still" got no right to say what's going on with her.

I don't know. That seems like a stretch, and rather complex for her young age. But, then again, knowing my Sweetie and how much concern she seems to have for me (if I fall down, she's always very concerned to find out if I'm okay), it really wouldn't surprise me at all to find out that she's holding back with her own stuff because she doesn't want me to suffer for myself AND find out that she's not well too. Just like I told her to do - keep it in. Don't say one more word.

I can't tell you how many times Hubby and I both have told her over the last year or so that she needs to tell us how she's feeling other than great. We've tried to arrange for her to give us a code if she's not well - that got way too complicated. We've tried to tell her that it's okay to say she's great if someone asks her how she is, but if we ask her how she's feeling, she's got to say something different, even if similar (which is what she usually went for.) We've tried to ban the word "great" from her vocabulary entirely - she just looks for synomyms. We've told her that it is in no way a sign of weakness to admit to feeling anything other than great. We've told her it's actually a good thing, sometimes, if she's not feeling well because that means her body is fighting the Lyme. We've tried to initiate a journal between she and I where she can write to me how she's feeling - she just writes me silly, non-related notes or draws me pictures, if anything at all. We've tried so many things. And still, she remains "great."

Which, you know. Is kind of great. And I'm sure, to her, she is just that. She won't lie.

I just can't shake this sneaking suspicion that her "great" is a rather "meh" feeling in actuality. That Lyme has been with her so long that she only accepts how she regularly feels now as "great," when, in actuality, she could feel so, so much more greater than that.

If only we knew for sure what her true starting point was/is. We could work so much more effectively to get her back to true greatness.

The Dance

We're done, we're done!!!

(ahem)

I mean, she's done, she's done!!!

Her latest doctor's appointment ended with the decision for Sweetie to come off the antibiotics now. Now? Now. Right now? Right now. Done. No more antibiotics.

Okay, then. Yay!

But now what?

On to the herbal supplement! In Sweetie's case, that means Artemisia. A supplement that's excellent in the fight against, of all things, malaria. But the doctor said that malaria and Lyme have one important thing in common. Both, as I understand it, develop cell walls around themselves, hiding themselves against antibiotics. But the Artemisia can get through. The Artemisia is out to kill!

Kill, baby, kill!

On her new regimen, Sweetie need only take one Artemisia pill at bedtime, and her probiotics are cut to once a day as well. Better yet, the Artemisia and the probiotics don't interfere with each other as the probiotics and antibiotics did. She doesn't have to worry about spacing out these 2 products for maximum effectiveness. Yee haw! This just keeps getting better and better!

In actual application, though? A pill is a pill is a pill is a pill. I still make sure Sweetie takes her immune support gummy bear every morning. We still make sure she takes her probiotic at dinner time, along with another gummy. And we still have her take another pill at bedtime - the Artemisia. So really - same song, different notes.

And then, really... after all the excitement settled down, (yay! you made it through the antibiotics stage!) we really had to realize what the doctor's truly getting at here. The actual situation shows that she's not pulling Sweetie off the antibiotics because Sweetie really is "done" with them. No, it's more like she's pulling Sweetie off the antibiotics because Sweetie's body is telling us that her body is done with the antibiotics. Sweetie's body is revolting after 6 months. It can't take it anymore! Headaches and tummy troubles and nausea, oh my! It's time to give that body a bit of a break and try to fight with a new weapon. That is all.

Throw in my own little post-appointment Google search of what exactly Artemisia is... and I get nowhere near a sense of finality of my Sweetie's troubles. Turns out that Artemisia, yes, is excellent for fighting malaria. Aannndddd.... maybe not exactly Lyme so much as Babesia, a co-infection of Lyme.

Awesome. So now it may be that Sweetie doesn't only have Lyme Disease, but - given that she's kind of stagnating - she may in fact have this co-infection as well. Or another one! Let's try the Artemisia and see what happens!

(No, I'm not picking on her doctor. I'm just back to playing the roll of the frustrated mom who's trying to figure out, along with the doctor, what's going on with Sweetie. But at least this time I actually am confident in her doctor that, one way or another, we'll all figure it out. At least in time.)

So here we are, with Sweetie now on the herbal supplement for a week now. And I'm waiting. Waiting for the big Herx. The doctor said that, with the switch to the supplement, Sweetie may experience a strong Herx reaction. Alrighty, then! Bring it on!

And still we wait.

So far so good. No problems! Her belly feels good. No headaches. All is well. We've even taken to the habit of asking her nightly if she's still remembering what "art" is (artemisia. Art amnesia. Heh. We're funny.) Happy to report that, all things considered, this has so far been one smooth transition.

But, oh ho ho! Is no reaction, in fact, actually a good thing here? Just like when she started on antibiotics, shouldn't she have to experience a Herx reaction to show that something's working here? To prove that the supplement is killing what needs to be killed? Hmmm....

And so... On to the next phase, if for no other reason than Sweetie's body demands it. It will be good and interesting to see what positive changes come about from no more antibiotics coursing through her body. And we wait to see what, if anything, happens to her while on the Artemisia. Will anything happen? What if it doesn't? It means no Babesia, right? Probably? Maybe? I don't know. But if not that, what? How do you ever know, with Lyme or any of the co-infections, when you've got it licked? Is it ever licked?

I will say, upon lamenting to the doctor that I too felt Sweetie was "done" being on antibiotics and that I felt only the worst cases of Lyme were on meds for 6 months or so, she said "no." She has patients who have been on antibiotics for 3 years! So 6 months is really not bad.

Not so bad. Not so good. One step forward, two steps back. Two steps forward, one step back. The dance goes on.

Same Ol' Situation

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.