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.

Tick Magnet

I admit it. I am a woman of extremes. Especially emotionally speaking. I am either completely at peace, totally in a "go with the flow" attitude. Or - I am completely freaking out, worried about everything, thinking the world is surely going to come to an end over such and such issue.

As you can imagine, I prefer to stay in the peaceful frame of mind as much as I possibly can. This can be tricky at times, but I do do my best to remain "chill" about as much as I can.

When it comes to ticks and Lyme Disease - woo, boy! Is that ever a topic of great extremes for me! Given all I've learned about Lyme over the last year - let me tell you, I have a whole arsenal of information to scare the living daylights out of anyone! Lyme can be a very scary thing. And here we have Sweetie, diagnosed with Chronic Lyme Disease. Awesome. Let the freaking out begin - and not let up.

Except, as pointed out in my last post, it does let up. Get your kid with the right doctor, on the right medicine for the right length of time, and you start to see improvement. All seems pretty well again, pretty much of the time.

And honestly... as far as tick checking goes... even someone like me gets a little lazy. Things are on an upswing! I can tell she's feeling better (even though my kid rarely admits the opposite.) And besides - she's 9 1/2 years old! She is completely capable of checking for ticks herself! We remind her to do so... every once in awhile. Uh... when we think about it. Probably not enough. Yeah, definitely not enough. And I do check her out too! I do! Just not constantly. When I think about it. Which, really, it's kind of a really great relief for me to NOT be thinking about ticks and Lyme as much as I was, say, in the Spring.

Besides - if she were to get bit again by a tick, now is pretty much the optimal time for that, seeing as how she's on longterm antibiotics anyway. She couldn't possibly get reinfected with Lyme now, while being actively treated for it! Right?!

And also? Sweetie tends to spend most of her time inside.

No, it's really not a good thing. Kids should be outside, right? But I am, in a way, pretty grateful that Sweetie tends to be what I'd call an "indoor kid." Wanting more to stay inside and play with her Legos or stuffed animals, or watch a few episodes of Rocky and Bullwinkle & Friends from our DVD collection. She does crafts, draws out entire plans for new websites she wants to create, works on jigsaw puzzles, plays on the computer or on her DS. She keeps herself busy, rarely complaining of boredom.

It all works out pretty well for me, as I'm not what I'd call an "outdoor mom." I'll read, write, watch TV, get chores done, play on the computer, cross stitch, work on puzzles... that sort of thing. It's too hot or too cold outside, depending on the season, for me. I'll stay in the house, thank you very much.

So, the two of us, we get on pretty well together. During this summer when I have occasional days off from work each week, she and I do okay together. Well, apart/together lots of the time, doing whatever it is we desire inside the cool, comfy house.

But then there are days like yesterday where we, along with Daddy, spend a full day doing outdoor types of things. Yesterday, it was geocaching. Most Daddy involved activities, in fact, are centered around geocaching - a completely outdoor, mostly woods-based activity. And so there we were yesterday, from 8 a.m. until 4 p.m., trekking around the area's wooded areas, involved in various International Geocaching Day events.

By the time we made it home, after stopping for some necessary grocery shopping, we were all beat. Sweetie had definitely had the most "exciting" day out of the 3 of us, complete with a dramatic splat into a large, slippery puddle on patio slate tiles. Impressive that, 4 bandaids and soaking wet clothes later, she still wanted to tough it out and stay for the ending event's gathering.

So we're home, groceries unpacked, Daddy in the shower while Sweetie and I settled in to read for a bit. When Sweetie, distracted from her book (as much as I hate to admit it, she is decidedly not the reader - as both Hubby and I are), sticks her fist in my face and demands to know, "What's that? Is that a tick?! I can't get it off."

At first, no, I didn't think it was anything more than a teeny, tiny speck of dirt. No surprise there, given the conditions of the day and the conditions of Sweetie's puddle tumble. I tried to swipe it away, but it didn't budge. I looked closer. Well... maybe? Sweetie went to get tweezers and I asked her to bring me the magnifying glass too. With tools in hand, I successfully got it off her, easily. I placed it on my own back of the hand (yeah - I know - not the smartest move, Sherlock) and finally took as close a look at this mysterious speck as I could with the magnifier. Yep. It was almost undetectable, but this thing was moving, slowly but surely. And, yep, there I could see it's teeny, tiny legs.

This, my friends, was a tick.

Using the tweezers, I got it off me and squooshed it to death, finally rinsing it down the drain. When Hubby came out of the bathroom, I let him know what we'd found. It was on the back of Sweetie's hand. I didn't think it had bitten her. Hubby agreed, imagining that it was still on it's journey to a warm, dark body party where it could feed, when we found it and snatched it up.

After this, I did a thorough check of Sweetie, and Hubby and I looked over ourselves as best we could too. But even so, this whole experience brought up and reinstated some really deep concerns for me.

1) This particular tick was TINY! So even with regular tick checks - had we been doing them all along and even last night's actual check - it is HIGHLY probable that a tick or 2 or 3 or 90! could have been missed. Especially in hair. I can check all I want. I could be the best tick checker ever! I may find one. But it seems to me that, even so, I will inevitably miss several.

2) Sweetie actually is the one who found this tick on her. I wasn't doing a tick check on her. I probably wouldn't have done a tick check on her last night. Too tired from the day. Just don't think about it. Her fall injuries had been properly cleaned and bandaged, and she's not yet at an age where she needs to take a bath everyday. So even without a tick check, as a general rule she's not washing daily to rinse away what we don't see.

3) Sweetie found the last tick we saw on her too - not us. We thought that last tick was the tick that set her world upside down (and she had been inside all that day - by the way.) But from what we've learned from her doctor and the testing, it was most likely a tick previous to that one that bit her and gave her the Lyme. What is it with ticks and Sweetie?! As far as I know, I've never been bit by a tick. Hubby, who is regularly out in the woods, geocaching, more than any of us, has just been bitten the one time at the end of May. But Sweetie now has had at least 3 incidents of ticks on her. Granted, this one last night was not a bite. But still... had she not found it on herself, it would have crawled somewhere and dug right in!

And now, here we are, about a week away from finishing Sweetie's 5 month course of antibiotics. We go see her doctor on Tuesday. Of course, I'm going to let her know about this latest incident. I just hope this turn of events doesn't mean Sweetie's in it for another 28 days of meds before she moves on to the next stage in her treatment program.

It is what it is, and it has to be what it has to be. But she's been doing so well and I want to see her move on to the next stage. I'm hoping our little Tick Magnet has not just set her treatment back to more of the same old thing.

And it's not like keeping her inside can save her from the ticks!

And it's not like doing regular tick checks will ensure we find ticks anyway!

And - furthermore - when Sweetie is feeling unwell, like she was on Friday (sore throat, mild fever, general ickiness) - we can never be certain, it seems to me, that this is a "Lyme-based illness" or a "real" illness (meaning contagious. Actually the flu, for instance.) (I am not in the least insinuating that symptoms of Lyme Disease are not "real.")

Aannnndddd.... School's about to start again. Yippee! Bring on the sicknesses! Is it a cold? Is it the flu? Or is it Lyme? Who knows?! Whee!

Aaannnndddd.... here I go with the swing up to my "freaking out" mode.

Yippee, yippee, skippy.

Don't Forget to Worry!

Ha! Telling me don't forget to worry is like telling Katy Perry don't forget to wear her spinning peppermint bra.

That said... huh... I kind of did stop worrying about Sweetie.

She's been good! She's been energetic. She's been squirmy, hyper, talkative and crazy. She's been herself. What a wonderful sight to see!

So, Sweetie's back to herself and... I'm sorry to say our "restricted diet" for Sweetie (no grains, no sugars) has, in many ways, slipped back to its old self as well. Not that we were ever bad eaters! Many of Sweetie's favorite foods are fruits and veggies, and she counts fish and a certain tahini veggie stir fry dish we make as some of her very favorite foods. And she's not really a snacker. But still...

We're running low on groceries, can't get to the store, and find that we still have some pasta in our pantry. Eh, let's have that. Look at that! Sweetie did fine!... Wow, it's hot! Sun tea time of year. Sweetie loves sun tea! A spoonful of sugar isn't so bad to add to that... Now we have a family gathering to attend. A buffet. Well, just do the best you can. You really want that roll, huh? Yeah, sure. I guess. And, she's fine... Well, we had pasta last week and nothing bad happened. We're home late and that's an easy dinner. Let's do it again. Well, that went well enough... Friends are coming over and the easiest thing to feed them is to order pizza. Eat the pizza, it's okay for today. But we really do need to get you back to your good diet.

Not to mention Hubby... remember Hubby?... and his diagnosis of Lyme in mid-June. A diagnosis that landed him a 28 day course of doxycycline. A premature diagnosis that, when the blood test came back, proved "wrong," in that the Lyme test was negative. Ha! Those silly Lyme tests and their bad rep for false responses. At least the doctor recognized this and suggested that, if the doxy was helping to make Hubby feel better, he should consider staying on the antibiotics for the full course. Yes, I said. You will be staying on the doxy. No doubt about that. BUT... the doxy, it made him nauseous. Almost constantly queazy. And so, his response... soda. Soda every day. A lot. It settles the stomach, don't you know. Yeah, but... I'm pretty sure soda is no way, no how even remotely allowed to be anywhere near our "no sugars" diet. By a long shot! Yeah, but... the tummy, it turns. A lot.

And so, Hubby slipped. Sweetie slipped. I slipped. We are a very slippery family, we are. But, no... it is not a good thing, for any of us.

And, like I said, we really do have to get you, Sweetie, back to your good diet. You've been good so far with the bad things you've eaten recently. But you've been lucky. You never know when something could bother you again. You've been feeling good... we've gotta keep you that way!

But, then again, Hubby's working really late tonight. I've got to feed you dinner. There's the last of this left over pizza here. Can you eat 3 pieces of the small cheese? That's a lot for you... Okay, here it is... Good! It's gone.

A few hours later... Sweetie's laying on me calmly as we watch TV. None of her usual fidgeting, chatting or craziness. And she seems to be covertly holding her tummy... She wants to go to bed before one of her favorite stay-up-late TV show treats is over.... She selects Love Bug from her stuffed animal collection to sleep with, a friend I know she only chooses when she's not feeling well.

What's the matter, Sweetie? Are you feeling okay?

(nothing)

What's wrong? Does your stomach hurt?

(nod of the head)

It feels like I either should get up and do something really active, or I'm really hungry.

(????)

Okay, so I didn't quite understand her explanation of how her stomach felt, but I completely understood why her stomach would be bothering her. Oh, yeah! You have Lyme! Your stomach bothering you is your Lyme "thing." I remember this! You're getting better, but doggone it if the Lyme most likely is still with you. At least a little bit. As we've learned, Lyme - once it's late state - is incredibly tricky, if not impossible, to rid from the body completely. And, you ate that pizza tonight. And all the other junk in the last weeks. And you really need to be eating well. No grains. No sugars. This is our big reminder.

This is what I forgot. Or almost forgot. I needed this reminder. Sweetie needed this reminder. Ever vigilant is how we must remain.

Vigilant. That's a good word. Not this worrying crap. I don't need to worry. Not about this, anyway. Let me tell you, I have a whole boat load of other issues I can spend my time worrying about, don't you worry. Not for me, anyway. I am a worrying pro!

But not about this. No need to worry about her. I just need to remember to stay vigilant. Remember that she's doing so well because we're doing so well! Never forgetting her antibiotics or probiotics. And maintaining a healthy, anti-inflammatory diet for her.

For the most part. Oops.

It's been great to have Sweetie back. We're back to the healthy kid she'd always been. Or, at least - for all outward appearances - she seems healthy. But the truth is, the Lyme is always there, lurking. She can keep it well enough at bay. She can truly feel back to her old self again for extended periods of time. She just has to work a little harder, eat a little better, to strengthen her healthiness and weaken the Lyme.

Sweetie's body is her house. And you, Mr. Lyme/Mr. Neighbor, are to stay out of her yard and mind your own business! You don't worry about Sweetie, and we won't worry about you.

But don't you forget, we're watching you!

Wading Through The Weeds

Sweetie has been doing a lot of wishing lately.

Wishing there was nothing in the world to make people sad, only wanting happiness.

Wishing there was nothing in the world to make people hurt and in pain.

Wishing there was something that would automatically weed the garden so she didn't have to do such a boring, hot and sweaty job herself.

Well, I don't know about the weeding aspect of her recent dreamings. But as for her other wishes, I had to point some things out to her. 

I explained how she only knows what happiness feels like because she's felt so sad at times. And she knows how great it is to be free of pain, injury and suffering because she's had a few accidental incidences of being injured and in pain. 

I just finished reading a novel that smatters it's pages with various Yiddish folklore and cultural beliefs. The book ends with the story of a child yet to be born. In the Yiddish culture, it is believed that unborn babies live in paradise and are taught all about everything - history, culture, art, their families, everything. They eat art, drink books, and bathe in emotions. Then, just before they're born, they are smacked on the nose and sent to their parents - without any memory of the paradise they came from nor what they learned. It it within your life on earth that you regain what you can of your previous knowledge and truly come to appreciate the beauty and abundance the physical world has to offer. 

I loved this story. Particularly the part where the unborn child was spending his days bathing in Love. He, and the other unborns, loved their Love Baths and never wished to leave them. Then the guardian of the unborn child - a family member who had lived his physical life and was now aiding future family members before their births - made him bathe in the other waters. The sulfurous baths of Envy and Hate, the cold baths of Loneliness and the smothering waters of Depression, to name just a few. Then, after all that, the unborn was taken back to the bath of Love. Oh, how much more lovely this felt now, after knowing how the others felt by contrast! What a better appreciation of love!

I read this story just today. It was a week or two ago - well, it's been "wishes" here and there for awhile now - where I suggested to Sweetie that she only knew the one emotion because she had felt their opposites. Imagine! Everyone walking around happy all the time! But would they really be happy? How would they know they're happy if they didn't have sadness and pain as a contrast? You can't appreciate how great it is to feel so good if you haven't been on the other end of the spectrum, now can you? 

So, I'm sorry, Sweetie, that sometimes we take you away from things that make you so happy. I'm sorry that accidents occur and you fall down and scrape your knee or cut your hand. I'm so sorry that sometimes you just feel so sick and that a teeny tiny little bug has done its worst to you, making you now feel yucky and causing you to be on lots of medicine for a long time. I really think it's awful that nightmares creep into your dreams every once in awhile, waking you from your sleep and making it difficult for you to go back to bed and scared as you lie there wishing for the bad memories to leave you alone. I'm sorry that people we love have to die, have to leave this world as we know it. Yes, we will miss them. It's true, it will certainly be sad that we can't have new experiences with them, no more memories in the making. 

But oh how glad am I that you know such great joy, peace and happiness in this world! You know what it feels like to be truly, deliciously happy. You have no doubt at all about the love Daddy and I - all your family and friends! - feel for you, and you love us with such big, deep love right back. You see such goodness in people. You look out for the lonely, the different, and you take them under your wing. You create and play and try and try again - even though you know there's a risk you may fall. I love that you see our lost loved ones in the butterflies that flutter by and you can readily recognize that they are, truly, never gone from us as long as we remember them. Lost loved ones are still here, you say - just in a different way. I love your positive outlook on life and the strength you have, personally, to get through all the harder, yuckier times. You know they are temporary. You know life is much more happy than sad, more pain-free than full of suffering. And, most of all, you know exactly who you are and will not let anyone tell you how to play, how to feel, or what to think. You are plenty capable of making up your own mind and not worrying about what others think of that. 

You are, for the most part, so so happy. 

And I'm sorry - (but I'm not) - that you recognize just how happy, loved and great you are because you have also felt the other side.

It's a hard truth in this world. But it's a wonderful truth - don't you think? I for one hope to learn more from you, Sweetie. Appreciate the good, the love, the happy - for we know all too well that the sad, the suffering, the pain can creep in at any time.

And weeds. Lots and lots of weeds. 

One Up, One Down

Today was Sweetie's check up appointment with her LLMD. I was happy to report to her that Hubby and I have seen a definite spike in Sweetie's energy level. I told her all we've been doing lately, and about Sweetie's recent week of not feeling so great. I mentioned the "elbow pit" pain Sweetie had a couple weeks ago, the tightness in her chest she felt a few times in a week about a month ago, and - oh yeah - the fact that Sweetie reported to me right after her last appointment that she feels like throwing up every day! But all these negatives have passed her by, at least for now. And all in all, Sweetie has been dancing, moving, shaking, talking and alive! So good for us to see!

The doctor was happy to hear of this energy improvement, and took it as a definite sign that the Augmentin is working for Sweetie. I knew, going into this visit, that even though I had good things to report, we'd still be looking at about a month more on the meds. I was wrong. Good news = two more months on this antibiotic! I guess, the point being, now that we know this is the right antibiotic for her at the right dosage, and we can finally see some definite improvement, we need to give it a couple more months to really do its thing of killing off as much of the Lyme as possible.

Okay, then. Summer #2 of medicated Sweetie. We can do this!

And when those two months have passed, it'll be on to the herbal supplement portion of our program. Stay tuned...

So. Sweetie is on an upswing. Yay! In other news, we spent Father's Day Sunday at... wait for it... urgent care. Waiting to see the doctor, reporting flu-like symptoms that had been smoldering for Hubby and finally came to a head Saturday evening, and a strange rash that had appeared opposite from where he was bit by the tick just over 2 weeks prior.

Classic symptoms. Classic timing. Seemingly classic case of Lyme Disease. 3 weeks of Doxycycline was prescribed (I got it pushed to 4 weeks), labs were drawn (for Lyme and 3 other co-infections, as well as a blood count), and the rest of Father's Day included plenty of rest and quiet time for Hubby as he willed himself to feel better. Not quite the Father's Day he, or we, were wanting, but good to get some answers.

He's back to work today, after spending yesterday at home sleeping and gaining back strength and an interest in eating. By last night he was much more like himself. I'm glad he's back to work, but really hoping he takes it easy today and is truly feeling much better soon.

Even though we are bummed to get this diagnosis (well, technically, we don't yet have the lab results, so no official diagnosis yet. But, as I said, the doctor and we agree that it sure does seem like Lyme), we feel lucky that, this time around, we knew when he was bit and what to watch for for symptoms. Sweetie got the flu symptoms last year, but we were nowhere near as Lyme-savvy as we are now, so didn't even consider that she was experiencing anything other than the flu. It wasn't until 2 or 3 weeks beyond that that we finally figured her lingering headaches were fishy and took her in to see the doctor.

So, Hubby will be okay. We caught this early enough for him and got him the treatment he needs to kick this Lyme to the curb. He and Sweetie will be sharing probiotics for awhile, and reminding each other to take their medicine. What a fun father/daughter bonding experience! (ha!) But, in the end, he'll be just fine.

And Sweetie? Yeah, she'll be okay too. It's a tougher road for her. A long, winding road that seems to be smooth for now. Time will only tell if we'll run into anymore obstacles along her journey or not. Something tells me, despite her improvement, we still have twists and turns to discover. But, yeah. Through it all, she'll be okay too. She'll be just fine.

She'll be great.

Energy Boost

I have good things to report about Sweetie! But first, a word on our Hubby Watch, 2012...

As noted in my previous post, Hubby was bit by a tick a little more than a week ago, just before we were off on a weekend away, and after normal office hours for his (not Lyme literate) doctor.

We chose to just watch for any symptoms of Lyme with him - the bullseye rash, flu-like symptoms, etc.

So far, so good. He happens to be experiencing allergic symptoms to the pollen in the air. That, or a mild cold - nasal drip, slight headache. And he keeps asking me if these are "flu-like symptoms." No. You'll know if you're brought down by flu symptoms, trust me. You won't have to ask if that's what's going on.

We are also going to get Hubby tested for Lyme, as a matter of course. One lab tech I spoke with offered that this should be done 2 weeks after the bite. Now today I read, via a friend's friend, that antibodies won't be registered on a test until 3 or 4 weeks afterwards - which is "too late" in the game, if you are infected, for antibiotics to be completely effective. I think we'll try for the just-more-than-two-weeks testing, anyway. With all the hiking and outdoor activity Hubby's been involved in over the last few years, he is at a higher risk for Lyme, even without this known recent bite.

So, there's that. We will keep you all posted...

Now, back to Sweetie...

She is currently finishing up her 11th week on antibiotics. Almost 3 full months on Augmentin. And Hubby and I can honestly say that within the last couple weeks we have seen a definite boost in her energy level.

It should also be pointed out that the last couple of weeks here have been uber busy, what with our move, a long road trip to a family wedding, birthday parties, and the end of the school year. So, if anything, you may think that Sweetie - heck! all of us! - should be way more wiped out than we normally are. But no. Not for Sweetie, anyway. She has been chatty and none-stop moving... just like she used to be!

Man! I forgot how annoying she can be!

(Kidding! I kid!)

But seriously... from her non-stop dancing at the wedding, to dinnertime conversations where she talks, talks, talks, talks, talks, to her "cuddling" up with us on the couch/can't stop moving even though she's trying to relax with us, it's all adding up to one Sweetie full of energy! And we love to see it!

Now that she's like this again - how she used to be - it really goes to show us how non-energetic she had become. No, at the time it didn't seem like she was way low key either. Just kind of consistently mellow, really. But, as compared to now - and now that we're reminded of it, before - we can really see the difference.

Does she still look tired? Yes. A little pale? Yeah, I think a bit. Did she have to miss some school a couple weeks ago due to not feeling well (Lyme related/Herxing/crazy life/bad eating results). Yes. So we still have a ways to go, I'm thinking. But for now, it sure is good to see this glimpse of a return of our Sweet girl.

And now for my latest concern with her: She was going to go jump rope the other day, but then changed her mind, saying out loud (mostly to herself) that she'd rather not do that because her elbow pits hurt a bit.

Hmmmm... elbow pits = joint pain. Joint pain = Lyme symptom. A Lyme symptom she's never mentioned before (and, had I not been close enough to hear her talking to herself, I'd still not know about.) I've been asking her ever since how her elbows feel. Last check, yesterday (trying really hard not to be obsessive with my asking!), they still hurt. Hmmmmm....

Lyme. It's a process, for sure, to get it under control. Her next doctor's appointment is next week. Curious to see what the next step in our process will be.

Tick Tock

... Speaking of Hubby...

(wasn't he supposed to be a co-author of this blog with me? Helloooo! Where are you?!)

... Last Thursday afternoon, right after 5pm, he found that he was bit by a tick.

Great! Now what? He didn't think the tick could have possibly been on him for very long at all. But still. With all the nasty stories and in-depth info on Lyme we've researched ourselves and heard delivered from Lyme experts, we knew that to wait for treatment even a little while wasn't the best plan of action.

But, it was just after the doctor office closed for the day, and we were leaving for a weekend away in the morning.

We knew enough that to go to urgent care would just result in him getting the typical 2 doses of doxycycline - a "preventative" measure most doctors seem to be prescribing that - guess what?! - doesn't work. At all. It is really a worse plan than to not do anything. Hmph.

So, no. We didn't want that.

And we also knew that what, ideally, should happen is for him to be put on antibiotics for a 28 day course - even without the diagnosis. However, hardly any doctor does this. Only Lyme literate docs "believe" in this method of preventative treatment.

Hubby's doctor (who is my doctor) is not Lyme literate. He's a great guy, for all intents and purposes. Maybe he'd listen to our family's history with Lyme, recognize our concern, and throw Hubby a bone. But it was doubtful. Very doubtful.

So... we were kinda sorta freaking out, initially, about what exactly he should do.

I called a not-really-at-all-close acquaintance from church, who happens to be a homeopathic, Lyme literate doctor. Yes, it was of course after hours for her, but there was a number to reach her at at any time. I didn't exactly reach her even there, but I left a message. Yes, you may remember us from church. No, we're not your patients. Would you possibly have any recommendations for us at all? Please and thank you very much.

I never heard back from her. Not surprising, considering that we aren't her patients. But, it was worth a shot.

I emailed another Lyme literate contact I have. She wrote back with a suggestion to see if Hubby's doc, in the morning, would possibly provide him with a week's course of antibiotics. Beyond that, ????...

So, that was the plan. Stop freaking out now, and call the doctor in the morning.

The next morning, after I had woken in the middle of the night to think on things a bit, I asked Hubby if he still thought we should call the doctor. My feelings were that, just as the 2-dose course of doxycycline doesn't do you any good, so too would a 1 week course not be beneficial. 2 pills or 1 week of pills - both, I figured, would be enough meds to prevent your body from making antibodies against Lyme - thus making any future Lyme testing return negative, but not enough meds to actually kill the disease if, in fact, it exists.

Furthermore, since we know when he was bit, we can simply watch for the bullseye rash to appear (assuming, if it's Lyme, that a rash will appear, as often it doesn't, even with the disease), as well as flu-like symptoms within the next few weeks. Because we've been through this with Sweetie, and we know better what to watch for and what to insist follows through as a treatment plan, if need be, it seemed best for him to just wait it out. If symptoms crop up, and he gets an appropriately long, appropriately strong dose of antibiotics at that point, that in itself would be soon enough to get the Lyme wiped out. The earlier Lyme is caught and treated, the better, yes. And this plan to wait will get us to the appropriate results soon enough to take care of it, I feel.

Hubby agreed. Fine. No. Let's not call the doctor.

And so, we wait. It's now been a few days and all seems well, so far. Mind you, we just moved, and we just had a whirlwind weekend away, and he's off this week trying to settle us into our new home... and all of this is stressful enough. So, yes, he's tired. Yes, he had a headache yesterday. Yes, he kind of feels blah. But all of this seems par for the course of our crazy lives of late. No particularly worrisome symptoms specifically related to the bite have yet cropped up.

Here's hoping it stays that way.

Saturdays with Hubby

Happy Memorial Day Weekend! We here at chez OurSubLyme Life decided to not only participate in the typical Memorial Day barbecue, but also throw in attending a huge birthday party, and MOVING to boot! Woo hoo! Do we know how to fill a long weekend or what?!

After we got home the other night from the birthday party, and settled Sweetie in to bed, I could finally admit to Hubby that I was feeling... oh, I don't know... frustrated? is that the word?... about, well, Sweetie, I guess. Or her dealings with Lyme. Or I don't even know what. I just needed to talk.

I felt bad that, whenever Lyme Disease is brought up in conversation, I feel impassioned, excited almost. As if I could talk to someone forever about all that I've come to know about the disease. It's great that it's a subject I'm comfortable talking about and can share with people many things they themselves probably don't know. But isn't it also kind of like I'm taking advantage of Sweetie's unfortunate diagnosis? Like bad diagnosis = great topic of conversion for mom. It just doesn't seem right, or fair, to Sweetie.

Hubby said, no. It's just that it's a subject I've come to feel very strongly about. And sharing little known facts with people who otherwise may never know the severity of what Lyme could become is not a bad thing. Knowledge is power, and all that.

On the other hand, I felt like a fake or an imposter or something - first talking about all the truly terrible things that Lyme could mean for a person, and how terribly difficult it can be to "cure." Telling people about Sweetie's restrictive no grains/no sugars diet and the reasons behind it (grains and sugars are inflammatory)... and then looking off into the distance, along with those I am speaking with, to see our happy Sweetie playing and laughing and carrying on with all the other kids in attendance, not looking "sick" or otherwise afflicted in the least. "Yeah, right," they must be thinking. "Poor, poor Sweetie. What a shame she's so, so sick with this terrible Disease. Obviously, she's suffering a lot. Hah! Whatever."

Hubby assured me of the reason behind Sweetie's easy management of Lyme... because we've restricted her diet, have her on a strong antibiotic, and are helping her overwrought gut along with equally strong probiotics. Plus, she never was a terrible eater in the first place. Maybe if she had been, her original telling signs of infection (the cyclical vomiting) would have been something much, much worse. But it wasn't. She's good - no, great - because we're making sure she is! And that's a great thing!

I said I felt like I am always concerned with how Sweetie's feeling, and always frustrated that she never seems to tell us the truth. She's always great. But how can that be? But we can't possibly know exactly what she's feeling because we're not her and she's not fessing up. Maybe her "great" is only "eh," but she doesn't know any better because she's been "eh" for so long. Or maybe she actually is great! Who knows?! So frustrating.

Hubby said he figures that Sweetie actually, truly is great. In fact, he figures she's just as healthy on a day to day basis as any other kid. Maybe even more healthy because of her diet! Sure, she's apt to have bad days now and then. But so could any kid feel sick on any given day. So maybe Sweetie's reasons for her occasion down days are different than another kid's. Or maybe she really does just get a cold from time to time, for instance. He likens her dealings with Lyme Disease to those of a person with any other kind of "hidden" disease. Say, multiple sclerosis. The average person probably cannot tell if another person they meet has MS. And most likely, most of the time anyway, the person with MS actually does feel fine. But they have flairs where they do not. Which is Sweetie's situation as well. Most of the time, she's fine. Other times, she's feeling the effects of Lyme Disease.

Basically, it would do me some good to, more or less, forget about her Lyme on a daily basis, stop stressing that every little thing may or may not be related to it, and go on with life. When Sweetie really needs to ask us for help, when/if she's ever not feeling her best, she will definitely let us know about it. Chill the heck out.

I agreed that this would be a fabulous idea. For my own good, and for Sweetie's. She doesn't need me asking her all the time how she is (and over the last few weeks, I actually have really gotten better at this. Honestly!) She doesn't need to adopt a complex about how every little ache or pain or yucky feeling must obviously be related to Lyme. And, in fact, this is the total opposite of what we want for her, and for us. She may not use Lyme as an excuse! She already knows this, loud and clear. ("I'm too tired to move anything else." - "Why?" - "Because I have Lyme Disease!" - "Uh uh. Wrong. You may NOT use Lyme as an excuse to get out of doing things!" "Fine. I guess I could move one more box.") Nor does she need to live in fear of what Lyme could do to her. We intend to rid her of Lyme completely! You're fine, Sweetie. You'll be fine! If something is truly the matter as associated with Lyme, you will be able to tell the difference and we will respond accordingly. I promise.

After about an hour of talking, after I let it all out, after I was able to express all my frustrations and fears and wonderings and everything, I felt much better. Like I always do.

Talks with Hubby always make me feel better. They help me get a much better, more realistic view of the world. They chill me the heck out.

I needed that. I thank you, Hubby. And so does Sweetie.

50 Shades of Gray

Sweetie had her... well, let's see... second follow up with her LL doctor today since starting on her antibiotics 6 weeks ago.

When asked, Sweetie of course said she was great. But when the doctor then turned to ask me how I thought Sweetie was, I, well, hmmmm.... I'm not really sure. She's doing well, I guess. Yeah.

Funny. As I said in this post, after reading Cure Unknown, and recently listening to a Lyme expert speak on his personal connection to the Disease (through the devastating, years long plight of his daughter), I am just thanking my lucky stars that Sweetie's symptoms have never been anywhere near that bad. On the other hand, though, it was just a few months ago that I was feeling like a crazy person trying to find somebody, anybody, who would recognize the illness that I saw my daughter was experiencing and go about treating her in an effective, appropriate manner.

A) She's sick! This isn't right! Why doesn't anyone agree with me and help us out?!

B) Is she feeling better? Eh. I don't know. She was never feeling terribly, awfully miserable in the first place. It's really hard to say.

My one measuring stick I can truly judge by is the vomiting. In the midst of our searching for answers over the course of the winter, Sweetie's main issue was her vomiting every few weeks. But now? Well... she hasn't vomited since February (knock on wood). So that's one improvement I can see... but her vomiting stopped well before her Late Stage Lyme diagnosis and her new round of antibiotics began. So... hmmmm...?

Beyond that, on the negative side... she still looks awfully tired, almost all the time. Hubby and I see it for sure. Her doctor sees it. Random other people do as well. But we remain frustrated because, really, if you're not looking closely at her, or not looking specifically for it, the typical person coming into contact with Sweetie in a day will not necessarily see this in her. They will not see the dark, heavy eyes. They'll just see sweet, smiling, happy, "great" Sweetie - plain and simple. Or maybe? People just don't want to see her this way. My parents, for instance, don't understand at all what Hubby and I are talking about when we say Sweetie looks really tired. While Hubby's parents, on the other hand, nod silently in agreement when we talk about Sweetie looking tired and unhealthy.

But actually being tired? That's another very gray area. She has never been down and out, completely, truly fatigued. She can happily get through her day, now and always. But does she wake up after a good full night's sleep, yet continue to yawn as she manages through her morning hours? Yes. Does she seemingly more often than before come to rest on/cuddle up to me as her days wind down? Yes. Does she choose to play indoors quietly more often than run around outside being active and hyper? Yes... but that's always been her way. Really no change there. Is her energy level improving? Eh. Maybe? I don't think so? It's really hard to say.

On the positive side, I'm pretty sure I'm noticing a little more color come back into her cheeks. Sometimes, anyway. So that's good. But still, who's to say if that's really a definite measure of improvement. Or if I'm really seeing what I think I'm seeing... sometimes.

And then there's her "foggy brain" issues... if she's even having that. Aside from what I mentioned in my last post, it seems to me that she's having some difficulty with finding the right words sometimes. But, then again, she's never had what I'd say is an "economy of words" when she speaks. She usually takes the long way around a sentence/story and, if she gets hung up on a thought, she'll start the whole thing over (sometimes several times) rather than find a "close enough" word and move on from there. But is she getting worse still at this sort of thing? Hmmm... it definitely is a gray area when it comes to figuring out her gray matter.

(I'm really not trying to make a mountain out of a mole hill. I don't want to see that which is not there. Huh. Maybe that's why I also can't recognize any improvements I see in her either. I'm trying so hard to ignore what may be, but really probably isn't, Lyme related issues that I don't see what's truly going right for her.)

What I do know, and am learning more about everyday, is how utterly confusing Lyme Disease is, even to the LL community. In discussion with Sweetie's doctor today, I noted that I finally recognized in Sweetie what her version of Herxing is. To which the doctor responded that that was good, because if she's Herxing we know the medicine is working. But, I said, her Herxing this time around is very different than the definite, really awfully sick day of Herxing she had last summer when starting up on antibiotics. This time around it's much more subtle. Her doctor said, to this, that sometimes the Herx reaction is much more dramatic in a person who is more "newly" infected with the Disease.

"I thought I understood that a person doesn't have the Herx reaction unless they already were in the Late Stage of the Disease," I said.

"It's hard to say," was her doctor's answer.

Am I upset that I seem to be getting contradicting answers from Sweetie's doctor at different office visits? Not really. Frustrated, sure. Was Sweetie already Late Stage Lyme last summer? We thought that's what we understood. But now? Who knows. Certainly by now she is Late Stage, and now is when the right diagnosis matters.

It's not the doctor's fault for not having all the answers for us. I just know that, with Lyme, it's almost all "hard to say" what the true answers are. But working together, and watching for signs of improvement - as subtle or insignificant as they may appear to be - is how we'll move forward, working to get Sweetie back to her healthy self.

One more month on these current antibiotics. Then we'll regroup and see where we are. If no drastic improvement is shown, we'll switch to a different antibiotic.

Here's hoping I can start to definitively state I see improvement in my sick/not really too sick Sweetie soon.

And so the story continues. At this point, it certainly is hard to say how it all will conclude...

Just "Sweetie" Or Just Lyme-y?

Curse you, Lyme Disease! Curse you for, well, showing up at all in our Sweetie's life. That's bad enough. But double curses to you for showing up in her life now.

Now, when she's 9 years old. When the "9 year old change" is clearly taking place in our growing Sweetie's life. When she's just beginning to dip her toe into those "tween" years. When she's already getting moody and obstinate and very much trying to become more of her own person.

Testing boundaries, testing relationships. Testing our patience.

With Lyme thrown in the mix, it just makes it that much harder to tell what's typical growing "pains" and unfortunate milestones, or an effect of the Disease on her system.

I know that Lyme can cause brain fog - memory loss, loss of concentration, fatigue, inability to understand, moodiness, etc. - and I've seen some evidence of this in Sweetie over the last few months or so. But then again, is it truly brain fog at all? Or is it just Sweetie being "just Sweetie"? Perhaps not listening as well, not understanding or remembering as well just because of the developmental stage she's in.

Or am I imagining it altogether?

One example: We were at her Grammy and Grampy's last weekend, celebrating Grampy's birthday. He asked Sweetie how old she thinks he is. This game was not too fun, because Sweetie knew exactly how old Grampy was turning because we had discussed it earlier. But before Sweetie could speak up with the right answer, Grampy suggested to her that he was "older than dirt."

This confused the heck out of Sweetie. Who was "Dirt"? What do you mean? I don't get it. He and I tried to brush the whole thing off, telling her it's just a saying, never mind. But Sweetie was really confused. She went off to play for a minute or so, but then came right back to sit by me, asking me, "No, really. Who's Dirt? I don't get it."

I explained the whole meaning behind the saying and that satisfied her wonderings. But I don't recall that, once she "got it", she laughed about the joke of it all - which would be a typical Sweetie response. She just was pleased to finally understand, and went off to play some more.

I think there was another saying about something else that day that she overheard as well, again wondering what it all meant. Not sure - it was a hectic, busy, fun day!

Another example is just the fact that, more than once, Sweetie will ask me or Hubby a question, we'll answer it, and 5 minutes later she'll ask the same thing again. Was she really not listening when we gave her the answer before? Did she forget entirely that she already asked us this? What's going on?

Today, Sweetie and I are not really getting along so well. The morning started off with her needing to take a bath. Apparently, on her way into the bathroom, she bopped her head on the doorframe. I didn't see the accident, or even hear her cry about it. But when I got there she was sitting on the toilet with her head in her hands. When I asked her what was wrong, she merely looked up sadly/angrily and pointed to where on her head it hurt. Then she proceeded to gesture to me about the door and the bang and the everything. No words, just gestures.

"So are you not going to talk to me all day? I don't help people who don't talk to me."

And, no. She didn't talk to me for quite awhile. Wrote me messages, yes. But no words came out of her mouth.

Finally, when she did start talking, it seemed like an awful lot of attitude was coming out with those words.

Now, hours later, I've sent her upstairs to her room to read or rest. She's not talking again. She had been outside riding her bike and somehow or another got her knuckles scraped a tiny bit on a tree. But do I understand the details at all? Heck no! Because she's not talking.

Apparently, to Sweetie, pain and injury = an inability to talk.

Pity. Because just when it's most important for me to hear her so I can help her feel better and fix up any existing injuries, she shuts right the heck up and won't tell me where/how she hurts or what I can do to help.

Of course, this morning and right before I sent her upstairs now, I had a stern talking to her, insisting that she talk to me and wondering out loud why it is that she won't ever talk when she's hurt or not feeling well (this is not a "today only" thing.). Especially now when words would so help me to help her! Furthermore, I stated again that I didn't understand why it is she never wants to tell us she's anything but "great." "I don't understand why you get so mad at us for asking you how you are, in general. It just doesn't make any sense to me at all!"

ANYway.... sorry... got off on a bit of a tangent there. But seriously... who's to say what's truly bringing all this on.

Maybe it is Lyme driven and she's not feeling well and/or is tired but she doesn't know how to express it, so she comes off as snippy and attitude-y instead.

Or maybe she's just being herself - "just (Sweetie)" - and this is just the beginning of what I have to look forward to, moving forward into her teenaged years.

You know, when Sweetie was little and anyone tried to "cute-ify" her name in anyway, Sweetie would stop them in their tracks and say, "No! I'm just (Sweetie)!" Her insistence that people only use her name when talking about or to her, at the time, was pretty cute, actually, even in its stubbornness. How great that she knew who she was and didn't want anyone messing around with her identity!

Now, at this stage of her development and this point in her life with Lyme, I'm just left wondering sometimes who my Sweetie is at all, and what kind of person she'll be as we move ever so cautiously into the near future years of her life.

Get Over Yourself

Okay, okay. So it happened. Sweetie wasn't feeling so well yesterday, and she was good enough to let me know.

Not so much with words. But by not wanting to eat much of her breakfast yesterday morning and by her sour mood.

Oh, and around midnight the night before. Actually coming into our room and telling us she didn't feel good. Bad belly. She was a hurtin' pup for awhile there, poor thing.

Given all that, I decided to keep her home from school yesterday. One more day of spring school vacation never hurt anyone...

(Thanks to Nana for keeping her so I could go to work!)

Not that Sweetie's ill feelings weren't entirely unexpected. After all, we've had her (and us) on a no grains/no sugars diet for a couple weeks or more by now, but then allowed her (and us) to have a "cheat day" on Sunday in celebration of her Grampy's birthday.

Pizza. Sandwiches. Cheese and crackers. Ice cream. Cake.

Ugh.

That does not do a body good!

And now we know. Hubby and I came through it alright. But poor Sweetie. She, and we, learned a good lesson.

Good news: looks like we'd been successful at ridding her body of the excess grains and sugars that had been there.

Bad news: when reintroduced, those grains and sugars make a Lyme Diseased Sweetie feel pretty rotten.

More good news: by lunchtime yesterday, she was wanting to eat again, feeling a lot better. And by mid afternoon she was really feeling like herself again. Even wishing that she could go to school now! (too bad it was edging in on the end of the school day by then, not to mention she was with my mom in another town at that point.)

All in all, by the time I picked her up to take her home, you would have never known that Sweetie was anything other than her usual great in recent hours. Great! Lesson learned, and moving on.

When Hubby got home from work - knowing Sweetie had stayed out of school for the day - she greeted him as cheerily as ever. Hmph. Had I never said anything, Hubby'd have no evidence at all to clue him in that it had been a "sick day" for her.

That made me think... really, nearly all the times that Sweetie has felt ill due to her Lyme Disease, I've been the one to witness it. Only me. Nana too, if Sweetie ends up with her for the day. But mostly - only Sweetie and I have seen it all.

From last summer's migraine and her feeling so ill that she turns pale as a ghost and shaky, feeling like she's going to vomit at any minute; to the various instances of vomiting she'd experienced throughout the Fall and Winter; to yesterday's morning of tummy aches, nausea and tiredness. I'm the one who's seen her fast downfall every time.

I told Hubby last night that that's frustrating to me that I'm the only one who's really seen her so sick. By the time he gets home, she's past it all and feeling much better.

And not that that's true for every single instance. We both witnessed her Herx reaction last summer when she first started on antibiotics. And there was one evening late last fall when she had a bad evening of it. And of course, our midnight visit last night. But by and large, I see her at her worst, get her through it, and see her perk up almost just as quickly to her regular ways.

Hubby reminded me - and he's absolutely right... that's because Sweetie does not like to be sick. She gets over her illnesses as quickly as she can. Where other kids (and adults!) can be known to "milk it" for as long as possible, Sweetie recognizes the moment she feels even just a little better than the moment before, and rides that momentum out, getting herself back to her healthy ways ASAP.

So while, yeah, it's frustrating when she won't admit to feeling bad, and it's frustrating that, when she isn't at her greatest I'm typically the one to see that through, I do have to admit it's pretty darn great to have a kid so hell bent on feeling as healthy as she can to do all the great things she wants to get done.

Huh. That's another valuable lesson we can all learn from. Thanks, Sweetie, for teaching us the way.

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!