Pain Management

Me: Sweetie, are you stuffy? 

Sweetie: No! 

Hubby: Oh, my feet, Amy. Oh, my back. Oh, my head!

Me: ...  (hobbles around, winces as I get up from sitting, takes some meds if pains are too bad and waits in silence as they tackle the problem area).

Pain and illness. We all have our own way of dealing with it. Hubby speaks of his often to me. Sweetie practically takes offense if you suggest to her she's anything but "great" in every way. And I - perhaps the person who's most in any sort of regular physical pain here? Maybe? I don't know? - just deal with it in relative silence and carry on with life.

None of these coping mechanisms are ideal, of course. Hubby's complaints no longer strike me as anything more than just words. And I’m frustrated that, for some reason or another, Sweetie seems to think it's an absolute weakness to be sick or pained in any way. Or, when I'm really concerned about her, I imagine that she perhaps feels not-so-hot all the time, so that she's used to it by now and it's just the way it is. She no longer remembers what it's like to feel truly great, so what she regularly feels is "great" to her, even though I perceive her to be a little out of sorts.

Or maybe she's fine. I don't know. She's a mystery wrapped in an enigma who likes to tell riddles, that one.

And I, well... when I do speak up with a complaint (not so much a complaint, really. Just an acknowledgement that I'm feeling a little more worse for wear than usual), or Hubby recognizes in me that something hurts... I've been told I’m being a martyr. Bucking up and dealing with my problems, but not actively doing anything to take care of them, and moving on in a less than ideal physical state, when I don't have to.

Ah, I see. Sweetie does take after me, doesn't she? The difference? I'll admit to aches and pains if asked. Sweetie won't. When asked, in fact, Sweetie will get exasperated with you (okay, me), roll her eyes, and tell you "I'm fine!" Literally, it's as if she thinks it's some sort of personal defeat to admit illness or pain.

Not that she won't tell us, sometimes, when she's feeling bad. She tells us on occasion when she has a slight headache. If she feels funny in the belly, like she's really going to be sick, of course she tells us. But for the average coldy, sniffly, or regular Lyme Disease-y days... eh. She's fine, mom! Great! Never better!

As for Hubby and me... I think Hubby is like a lot of Hubbies out there. He doesn't complain at all to the average person. He just complains to me. Perhaps he could find a way to manage better on his own, and move on. Whereas I, I'm sure, really should do more to help myself, maybe even let others know more often that it hurts me to do this or that, rather than sit in silent pain as often as I do. I have easy access to a chiropractor, but I don't get adjusted because we can't afford it. If I get really hypochondriacal about my issues (which, believe me, I can... I just don't tell anyone my worries), I know I really should make myself a doctor's appointment and get some tests done. But then, we can't afford that either... even more so... so I don't. So I live with things as is, which isn't great.

And Sweetie? She probably has the best observation/coping skills of us all, when it comes down to it. She probably hears Hubby regularly mentioning his pains, and how easily I can ignore him because I hear the same things from him all the time... and knows that's not quite right. And she probably sees me wincing and silently "dealing" with my issues... and she knows that's not quite right either. So she adopts her status of usual greatness, not allowing herself to be "weak" and sick, and only lets us know when things really take a turn for the worse for her.

To get even more deep with it... maybe Sweetie perceives that my life in general is tougher physically than anyone else she knows, yet I rarely complain. So what right does she have, she may feel, to mention any of her little problems?

As I said, none of our ways is the proper way to manage one's own health. We each need to work on things. For me, I know it would do me well to remember more often that not only am I Hubby’s help-mate, but he is mine. We are here for each other, even through - especially through - sickness and pain. When he tells me about his aches and pains, I can possibly help him through some of that. And, if only I told him more often about mine, perhaps I’d feel just a little bit better myself because of the care he can offer me. 

I don't know that I have any real sort of point to this post. It’s all just something I wanted to write out to see if, through the writing process, I could make some heads and tails of the situation. Why we each are the way we are. Usually, that happens for me - writing makes everything more clear. This time, though? Not so much. It's still a murky mess of random observations.

Oh well. So, this one may have been a waste of time. And I've been sitting here for quite awhile writing it all. The more I sit in one place, the more my back hurts when I finally get up.

I guess that's what I get for writing about pain. More pain.

Ouch.

No, Seriously... We're Moving On...

Hey! So did I tell you guys we're moving? No? Well, we are. We're moving! Yay!

Where, you ask? Funny answer...

Right next door.

Yup. It was an interesting turn of events that I needn't bore you with, but when our neighbor/friend/Sweetie's Destination Imagination coach told us she's moving a few towns north and her house was available, we jumped at the chance to move right in.

Well, "move right in" at the very end of May. But still... it's coming fast and furious enough!

The big impetus to get out of our current rental house is the fact that Sweetie's bedroom (if you can even call it that) is uber-tiny. Big enough for her twin bed and dresser and little else. It's really a bed annex, actually. Didn't even have a door on it when we moved in, and now only sports one of those accordion style doors. In our new place, not only will Sweetie have a bedroom twice the size of her current one, but a separate playroom to boot. PLUS we'll have even one more "extra" space, which will become the study of sorts (part art room/guest room/study/catch-all room).

Hubby is also super excited to be gaining some extra land. Here on our current plot we have almost literally no space at all. A teeny front "yard" and no back or side yard to speak of. At the new house, right next door, we are gaining not only a very nice sized garden (yay!) but a back yard space to play and relax in as well. Our neighbor/soon-to-be landlady has always been quite the gardener, and Hubby is itching to get back to playing in the dirt, like he did at our old house, and grow us some yummy fruits and veggies to enjoy. Can't wait!

Another great thing, especially for me, is that we will now be "one-floor living." Technically, the master bedroom in the new house is upstairs. But the one bathroom in the house is downstairs (opposite of our situation now.) It's not often that I need the bathroom in the middle of the night, but when I do - I do. And I can't have it down a flight of stairs from where I'm sleeping. I can walk without my braces, but not easily, or safely. Especially in the dark while I'm super sleepy! And so, we'll be turning what is currently the living room of the new house into our master bedroom. So the master upstairs, now becomes the extra room. And the second bedroom upstairs, the playroom (what will be Sweetie's bedroom is also on the main floor - used to be the bedroom of our neighbor's daughter.)

Not to fret! There's a beautiful, bright, 4-season sunroom downstairs that will become our main living area. We haven't lost a thing!

And I'm gaining a dishwasher!!! This may be the best news of it ALL!!!

We're already packing up boxes and just alerted our current landlords today of our intentions to vacate their premises. This is real, folks! Anyone free on Memorial Day weekend who wants to help us with our Bucket Brigade style moving method is more than welcome to come on over and heave boxes.

On a more serious note... we always figured that, once we were ready to leave this house, we'd leave this town as well. Haven't heard the best of things about the teachers in the upper elementary grades and secondary school in town, you see. We want to see Sweetie continue to thrive in school, and get as many positive educational opportunities as possible as she grows, and we just weren't sure this town offers all that we want for her academically. Still not sure. Actually, no... we know for a fact that this small mill town is NOT the best place to send a bright, curious, enthusiastic, self-motivating, school-loving Sweetie. But... we also know that our bright, curious, enthusiastic, self-motivating, school-loving Sweetie WILL thrive if we remain 100% behind her and 100% involved in her education, no matter where we live or where she goes to school. She'll keep with D.I., which she loves, and that alone, I know, will encourage her to continue her creative, quick-thinking problem solving ways. And we will be behind her throughout her school career to push her and challenge her as her teachers do, or beyond what her teachers do - whichever the case may be. Basically, Sweetie will do just fine and prove her smarts no matter where she is.

And we do like this small, New England town. And we do like our neighborhood. This opportunity to move right next door, to the bigger house with the bigger yard is just perfect for us.

Yes, we're moving on, indeed. Onward and upward, here we go...

Moving On...

Hi there! This is just a quick post to let you know about Hubby and my new blog - Our SubLyme Life. Now that we have an official diagnosis for Sweetie, we thought it would be a good idea to separate two main blog themes into two different blogs.

So, for continued coverage of all things Lyme related, you'll have to scoot on over to our new digs. Here, at Spina Bifida Moms, I plan to get back to our regularly scheduled programming.

Of course, I'm sure I won't be able to totally keep any discussion of Sweetie's progression with her Lyme diagnosis out of what I write here. In fact, I just published a new post at Our SubLyme Life that really could have been posted here instead. But for the most part, I will attempt to put appropriate posts on appropriate blogs.

Join me for our continued ride, here and there, won't you?

Diagnosis

So, it's been awhile since I last wrote. We've been busy. Switching Sweetie to a new (Lyme literate) doctor. Getting new blood work tested. Waiting for results. Keeping our optimism high but our outlook realistic.

And now, we have our definitive answer.

Sweetie does indeed have late stage (chronic) Lyme disease.

The blood test (the Western Blot Lyme test) Sweetie recently had was different than her first Lyme test last June. The Western Blot test, in a nut shell and as I understand it, shows both the history of the disease and the current state of things. So, whereas Sweetie's former doctor's told me that she will always test positive for Lyme now that she's had it because the antibodies are in her system, Sweetie's new doctor said that with the Western Blot Method, it is possible to get a clearer look at things and properly determine if she merely has the antibodies in her system, or the Lyme is still actually active.

Let me tell ya, from the look of her results and as the doctor explained it to me, Sweetie's current state of Lyme is "lit up like a Christmas tree." There was more than enough evidential support to say that her Lyme is active in the late stage phase.

I hate to say I told you so (and in this case I really mean that), but...

And so... now we have Sweetie on high-test antibiotics for "at least" two months. Once the course of antibiotics is through, then she will start on a really long term course of herbal supplements. We started her on the antibiotics last night. Now, we're waiting for the Herxing to begin.

(Little did we know, when Sweetie's first full day on antibiotics last year caused her to feel just miserably flu-like, that that was actually a sign then that her Lyme was already in the late stage phase. What amazing things you learn when you speak with doctors who are knowledgeable in the areas you need them to be!)

Bottom line... that tick we found on her at the end of May last year? That wasn't "the" tick that gave her Lyme. No, the culprit tick was an earlier one we missed altogether. Thus explaining why her 6 weeks on antibiotics didn't kill the Lyme off. It was already too late. She may have had a brief respite from the symptoms, but she could not get rid of the disease.

Nor, of course, can she kill the Lyme off now. It's too late. Her months and months of treatment now are all about managing her health. All about warding off the symptoms of Lyme from cropping into her life with any regularity. Her regular vomiting she's experienced over the last several months? Definitely a symptom of Lyme. But this disease is migratory in nature, so it's vomiting every 4-6 weeks or so now, but that could change to bad headaches every once in awhile, or joint pain, or fatigue, or whatever. It is these symptoms that we are trying to keep away for as long as possible.

I wonder what life will be like once her long course of medications is through. Perhaps enough of the Lyme will have been rid from her system by then so that there is little for the bad bacteria to grow on when it wants to regenerate itself again (every month or so - Lyme is cyclical, thus Sweetie's frequent vomiting so far and her monthly Herxing we've been warned will happen while she's on the antibiotics.) I don't know. I'm still learning. Honestly, I don't know why long term medication won't kill it off. Maybe it will?? But then again, I do know Lyme is very tricky, able to put up a protective "shell" around its bacteria that is resistant to antibiotics. So... as I asked her doctor, are we simply managing at this point, or do we still have a shot at killing it off? "Managing" was her quick, assured answer. We are managing.

So. We treat. We wait. We change her diet to a combo macrobiotics/whole foods/GAPS to keep her body as healthy as possible as it deals with all this. We hope for the best and we wait for some occasional days when she may feel her worst.

As I said, last night I gave her her first dose of antibiotics. Medication I know, in short order, will make her feel temporarily miserable. As a mother, it wasn't my most favorite moment.

But, as a mother, I will do anything, as will Hubby, to help Sweetie live the best life she can possibly live while navigating this scary and rocky new road we now travel together.

I Just Don't Know

And neither, apparently, does anybody else.

I don't know if her now 4 separate incidences of vomiting - each about a month or so apart - are due to a weak gut after 6 weeks of antibiotics last summer, Lyme that remains in her system despite aggressive treatment, or Post Lyme Disease Syndrome, (which seems to me to be a fancy way of saying "we don't know what's going on, so we'll just call it this.") Or maybe something else entirely.

I don't know if perhaps it was her contracting Lyme - and, let's agree for now, successfully ridding herself of it - that weakened her immune system enough to "activate" whatever other ailment she's currently suffering from that had previously lain dormant in her system.

I don't know if I should believe the doctor we just saw, who said that once you get Lyme Disease you can't get it again, or a source such as Boston Children's Hospital who says that yes, in fact, you can.

I don't know if I should also believe said doctor's claim that young children, especially, cannot get chronic Lyme Disease, or my own knowledge of at least 2 other children I know personally who have been diagnosed with it.

(I do believe there must be a note in Sweetie's medical file that says "Warning: Crazy Paranoid Mom. Talk to slowly and repeat reassurances often.")

I don't know which people I should listen to, which websites I should believe, or which articles provide up-to-date, accurate information. Which first-hand accounts are worth noting and which are not.

I do know that I am not trying to "make" Sweetie still have Lyme Disease.

I just know that I'm trying to figure out what this abnormal (I mean, it is to me - wouldn't you think so too?), cyclical, "vomiting only" ailment is that Sweetie's currently dealing with.

I know that there is something called Cyclic Vomiting Syndrome. Fine. Again, to me this just seems like something some "experts" made up because they couldn't diagnose the real problem.

I know that our household diet is the same as ever. We have the same several dinners we rotate among, and Sweetie has pretty much the same lunch everyday. There have been no obvious triggers to when she's going to be hit with nausea, other than watching the weeks pass and silently figuring on the every 4 - 6 weeks pattern.

I do not think anything will come of last Thursdays blood test for Celiac Disease nor the X-ray to check her I don't even know what (her stomach? Intestines?). I do think the doctor ordered these tests just so he could say he's doing something. Especially after agreeing with me that, if it is Celiac, wouldn't she be sick after every time she has gluten? We don't have it often, but we don't hide from it either.

I'm sorry, but I do not think it is "just a coincidence" that "whatever this is" is showing itself now, right after last summer's Lyme diagnosis and treatment. Not after previously knowing my daughter to be a very healthy kid, in the grand scheme of things.

I'm sorry, but to me this has got to be, if not directly Lyme Disease, closely related to it or a separate ailment brought on by it.

I don't know if I just let her be, taking each episode as it comes, and hoping that there just won't be another one. Just accept that it's this Post Lyme Disease Syndrome, and that it may take up to a several years to get over, and not say boo to any medical professional again about it because it's just the expected course of how things will go for her.

Or... should I keep fighting for my daughter and not stop until I get to some satisfying answers.

But, frankly, I don't even know anymore if I'm trying to find someone who will tell me what I "want" to hear, or I'm not being receptive enough to what I'm being told.

I do know that another doctor in the practice we currently take Sweetie to told me - and this made sense - that Sweetie's immune system went through a lot last summer, so she is very likely to get "every little thing out there," especially over the next year or so, as her immune system builds itself back up to normal.

Fine. I also know that there is a particularly nasty norovirus going around now. A virus that I've most likely been exposed to several times, given the many people I come into contact with at one of my jobs. A virus that Sweetie's no doubt come into contact with too, at her small school or church group. And so, I've been waiting for her to come down with it. Expecting her to come down with it. Figuring, 2 Fridays ago when the nurse called me, that she, in fact, had it and would be down for the count.

But... no. It was "just" another one of her "regularly scheduled episodes." She threw up twice and was good to go.

Now, if her system is that beaten down, shouldn't she have brought this thing home by now? I mean, it's been out there a couple months or so by now. Not that I'm particularly wishing this on her - or us. I just find it peculiar that my little Sweetie with the fragile immune system has been able to successfully keep this stomach bug away. (And I'm hoping that remains the case, don't get me wrong. Knocking on wood...)

I am trying to get in with a Lyme literate doctor in the area. I know of at least a couple, but I'm not yet sure they are accepting new patients. If not them, somebody out there has got to be a better match for Sweetie, medically speaking, than the doctors in the practice she's currently at - almost all of whom admit straight away that they are not Lyme experts in any way.

I know medical professionals, who are not Sweetie's doctors, but who know her, who have informed me a great deal about the intricacies and little known facts about Lyme. But after last Thursday's doctor appointment for Sweetie, with that doctor warning me to be weary of "everything out there to be read," saying that free speech is a great thing, but who's to say who's right and who's wrong - I'm left with wondering just that.

Exactly. Who is to say. Not that website you, doctor, gave me to check out regarding all childhood health issues. I went there. You must not have given the right address. The site was unrelated. And similarly addressed sites had no info on Lyme when I searched.

It all leaves a mom mind-boggled, confused, frustrated and exhausted. Worried and reassured all at the same time.

What to do, what to do.

I just don't know...

You Can Be Your Hero, Baby

A short post today, but I wanted to be sure to get this down as one "for the books."

As part of Sweetie's homework yesterday, she was assigned to write a letter to one of her heroes, and within the letter she had to use at least 3 spelling words.

She came whining to me that this assignment was "impossible!" "Why?" I asked. "This'll be easy. Just pick someone you look up to. Who do you most admire?"

I was thinking Daddy would be at the top of this list. Maybe even Nana. I didn't honestly see that I would be a contender at all.

And I was right - about me, anyway. But oh so wrong as well. Who did Sweetie answer as the person she thinks is the best, coolest, awesomest of them all?

Herself.

Yep. In response to my question, she merely pointed (assuredly) to herself.

That's my girl!

"Okay, great! You can write a letter to yourself. That'll be fine with your teacher."

Sweetie thought no. No, it wouldn't.

But in the end, she ended up writing a letter to Super (Sweetie) - her favorite playtime superhero to imagine herself as. I actually haven't "seen" or heard word from Super Sweetie in quite awhile. But in this instance, she was the best option for Sweetie to write to, other than herself. :)

It's come up a few times before, actually, that I'll be teasing Sweetie, asking her who she loves most in the world (trying to get her to say me, expecting she'll say Daddy or maybe he and I both the same). But without fail, she always answers by pointing to herself. "I love ME the most of all!" she answers proudly and loudly.

Gotta love a girl who knows herself so well and loves herself so deeply. She's my confident, self-assured superstar. And as I look down into her shining, bright face, I look up to her in so many ways.

You don't think you can write a letter to yourself as your own hero, Sweetie. But I can write to my hero. In fact, it's what I've been doing here for years now and will continue to do for as long as I can.

She Knows What She Likes

A bit more than a month past Christmas, and... she's back to playing her "usual" games.

No, I'm not talking about Sweetie not minding her behavior anymore, no longer concerned about getting on Santa's "Good" list. I have to say, she's a pretty good kid most of the time anyway, Santa or no.

I'm talking about actual games, here. Or fun time activities, anyway.

Back to spending several hours at a time - if we let her  - playing with the Legos she's always had and with the fridge magnets she calls her "friends." In fact, she's just rediscovered a Lego set she got last Easter, I think, and has been building "contraptions" almost nonstop with the plans included there.

She hasn't touched her DS in at least a couple weeks. Probably more. And even when she did play, it was only very sporadically.

Likewise with the animation program installed for her on our computer at Christmas time. And the make-it-yourself marble run I thought she'd go completely gaga over. Eh. All fun things, sure. She has fun when encouraged to use them. But, yah. Eh. She knows Legos. She loves crafts. She gets lost in her self-created magnet world very easily. These are the things she knows. These are the things she enjoys the most.

I'm not complaining. I'm glad she seems to need such few things to make her happy. She is not the type of kid who constantly nags for bigger and funner and more STUFF! Give her some quiet time, some paper, scissors and tape, and she is good to go for the rest of the afternoon. Yeah, her art table looks atrocious. Hardly one square inch of free space to be found. But it's all good to her. She can easily find what she needs to create what she wants. And will come up with the elaborate story, to boot, to go along with the teeny tiny Secret Martian Kitty Ninja Superhero she just cut out of the paper scraps she's collected in a snowman gift bag.

She says she doesn't like to read - never has. Why, I asked. She loves for Daddy and I to read to her. She loves hearing stories. And she's a great reader, reading at at least a grade level or 2 above where she "should" be. So why not like to read? "Because," she says. She'd much rather be doing something, than sitting down motionless except for flipping pages. Hmmm. Yes, I understand that. Even though she's not what I'd call an "active" kid - not into sports or even typically wishing to play outside - she does like to be active by building, creating and imagining. Reading just doesn't cut it.

Yeah, it's a bit maddening to see all these Christmas gifts - given by us and other family members as well - just sitting by the wayside. But, like I said, I'm pretty okay with having a kid who knows what she likes and can independently entertain herself for hours doing what she loves with minimal needs. Happy for her to be engaged in creative pursuits that exercise her brain.

And, like the Lego set she's just brought out a few days ago, I'm sure she'll come back to these newer toys again someday, and be thrilled to have something different to play with for awhile.

Everything Will Be Okay In The End...

... If it's not okay, it's not the end. (author unknown)

As 2011 comes to an end, I look to this quote to help me realize a brighter future.

2011 has been a tough year for us. Tougher than the usual tough. Hubby's subcontracting job was slow to produce jobs for him and his dad. I quit one job in order to gain more hours (more "mom friendly" hours, that is) elsewhere - but now those hours aren't producing themselves either. And Sweetie continues to struggle with the aftermath of her treatment for Lyme Disease this past summer.

And I am realizing that I've been living with adrenal fatigue. Shocker, huh? I'm not stressed at all! My life is beautiful and calm and perfect in every way. Ommmmm....

HA!

But...

A new year is upon us and, with that, a new outlook of greatness for all!

Hubby and his dad are currently busy again with their subcontracting job, as well as side projects. We have no current reason to suspect anything but continued regularity and new jobs by the brimful...

Hubby is also newly installed as one of the latest artisans at Mountainside Gallery and Gifts. He's selling his beautiful wine bottle stoppers and pens, all lovingly handcrafted out of exotic and beautiful woods. He's so talented! Some sales have already been made and we expect more great things to come from this!

Now that the holiday season is on its way out, I suspect that students and parents alike will get back to the grindstone and start enrolling for tutoring sessions again. Gotta ace those ACTS and SATS! Soon I will be up to my eyeballs in students in need, I just know it!

(And, I have to say, whereas the lack of income from not tutoring has been trying, I have otherwise enjoyed having my late afternoons and evenings even more free to spend time with my family.)

As we struggled with finances, I simultaneously feel so incredibly blessed to have the family and friends that we do. Friends who have bartered with us and donated to us. Family who has helped us out in all sorts of wonderful ways. Yes, we didn't have the financial income this year that we continue to hope for. But yet, in some ways, I still feel like one of the richest women in the world...

Sweetie is back to a strict probiotic regimen, accompanied by immune boosting supplements and a mindfulness about the amount of gluten and processed foods that enter her body. Her most recent bout of stomach upset she experienced just yesterday morning produced only one episode of vomiting, as opposed to a half a day or more of ickiness during her previous 2 episodes since the beginning of November. So, all things considered, I think things are improving for her as well. Still - keeping track/watching the pattern, considering future steps needed to help her along. Her attitude of optimism remains as unflappable as ever!

And I am taking better care of myself as well. Regular vitamins and adrenal support supplements. A better diet. More rest when I can get it. Hubby is my number one supporter, making sure I'm eating more fruits and veggies every day and cooking as many vitamin and mineral rich yummy dinners as ever to keep me on track to getting my system back into shape. I am thankful that my ears have been open enough to hear about adrenal fatigue from trusted, knowledgeable sources and that I was able to recognize the symptoms in myself when I did. I am open to the course of treatment I'm on being the right one for me or, if not, being able to likewise recognize this and move on to a different course of action or even the possibility of a different diagnosis.

I will be healthier in the coming year, and beyond...

Sweetie will be healthier in the coming year, and beyond...

We will have enough financial income to pay for the necessities of life as well as just a few fun additions...

We recognize that only we can make effective changes... changes don't just happen upon us...

Everything will be okay in the end. If it's not okay, it's not the end.