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.