humpty dumpty

I've been feeling like Humpty Dumpty lately.  I crumble.  A lot. And then I have to take a few hours or a day or several days to put myself back together again. To reclaim my power. To feel like I'm moving forward, despite the apparent standstill or decline.

Last week, I didn't write here because I allowed myself to simply go with the flow. It was my last week of antibiotics in Phase 1 of treatment, and the doses were higher, so I figured it best to be extra gentle with myself, knowing the kids were both happy and safe up at camp in West Virginia, and I could pare down to my own basic needs for a little while.

I did a lot of painting. In fact I couldn't stop painting, as evidenced from the photo above.

 I actually didn't have hardly any pain, except when it came to Friday.  My neck hurt exponentially, but that could also be due to the fact that I couldn't tear myself away from the computer as the Supreme Court decision on marriage was announced and celebrated.  I'm realizing now just how much that whole thing took a toll on my body. There's just no expressing how much it means to me and my family that marriage is now legal for everyone in our country....  I cried and giggled and danced around like a crazy person all day long. And while it has ALL happy, it was still stress. It was still intense emotion.  I didn't acknowledge it in that way at the time...  I mean, let's face it--  lyme was the furthest thing from my mind on Friday...  but the fact is, stress-- ANY kind of stress-- makes things worse.

Then Saturday came. While we thought about joining some others for a celebratory brunch, I was a little overwhelmed by the idea. We went to the farmer's market instead, picked up a couple of locally made gluten-free mini quiches for breakfast, and then thought we'd go look at cars, since my car had seen better days.  Whatever possessed me to think that would be less stressful than brunch with friends is completely beyond me. Tee hee.

Well, it's not at all what I expected it to be.  We initially went at it very casually, not thinking we would actually GET anything, but that we would simply have fun doing a few test drives and narrowing down what we wanted.  And now, I am still trying to wrap my head around the fact that we are now proud leasers of a Honda CRV.

First of all, I had no idea that leasing a new car would actually cost the same if not less than buying a used car (unless said used car was cheap enough to be in the same condition as my old car, in which case, what's the point?).

And let's face it.  I'm just a sucker for reliability when much of my life right now feels so unreliable due to this #$%@ disease.  It's appealing to know that I won't break down on the side of the road, or that my headlight won't blow yet again, or that just two months after I do one huge expensive repair on my car, another sound that shouldn't be there makes itself known every time I turn on the air conditioning.  And that all maintenance is included.  I just have to show up for it.

But there's a part of me that's still scrutinizing myself and my choices.  If I get really honest here, it's not about a car. It's about the existential crisis that is happening inside of me right now, where I question EVERYTHING, not the least of which, what the hell is my purpose on this planet right now...  which in the grand scheme of things is far bigger than what car shall I drive, but to me, it all feels like the same friggin' thing.

To say that I was emotionally spent after yesterday would be a major understatement. My arms cramped up in horribly painful ways, due to sitting so long and not drinking enough water. It was an all day process, mostly because I no longer have the time or energy to filter what comes out of my mouth. I just said what came to mind, no matter how blunt it was, and I really made our sales guy work for it. In the end, we hugged it out. I don't know if this is lyme specifically affecting my brain in interesting ways or if it's something that chronic illness simply brings out in us, but I hear this happens often. It evidently worked in our favor in the long run....  although I think I *may* have developed a reputation at our local Honda dealership of being the most finicky, over-opinionated, hardcore sale ever (that, and evidently I drive like Ms. Daisy, but that's a whole other thing). While being more outspoken can be a good thing, it's also a bit out of my comfort zone these days, and it exhausts me, probably because I deeply mean and feel every word. It's not just blowing steam, it's REAL.

So anyway, today, I feel very similar about that car sitting out in my driveway as I did the day after we adopted our little dog, Stanley. I wondered what the hell had possessed us. I thought it was too much...  the barking, the adapting, the trying to figure out this new little creature in our house. I blamed myself for being too "soft," too irresponsible, too this, too that. I was completely and utterly overwhelmed.

Now I can't get that new car smell out of my nose, and I think to myself, this is just too much.

I'm finding that I say that a lot. When the kids are acting crazy... it's too much. When too many people are talking to me at once...  it's too much. When the cats fight in the middle of the night...  it's too much. When there's a lot of laundry to do... it's too much.  Deena thinks it's just my process, and encourages me not to take it so seriously. But I'm definitely curious about it, as my tolerance/energy for things has certainly diminished since getting sick.

I'm not sure what it all means....  all I can really decipher is that it's my way of saying I don't feel like there's enough of me to cope with things like change, like choices, like everyday occurrences on some days. I'm having trouble adapting.  Like most humans, I don't like so much uncertainty. I don't like not knowing if I should plan a circle for next year or not. I don't like not knowing what to expect tomorrow, much less a year or five years from now.  I don't like second-guessing every choice I make because I don't know how it will all end up in the end. (Do any of us ever know?)

But what it comes down to is that I'm not trusting myself anymore. This has got to change.  I have to trust that outspoken is a good thing. I have to trust that I can still remain kind and compassionate AND outspoken. I have to trust that I know what's right for me and my family. I have to trust my little slice of the red thread, and fully inhabit it without worrying about what it sounds or looks like to other people. I have to trust that if I can't do my circles, I'll make a mark on the world in some other way, when I'm ready. I have to trust in my healing. I have to trust that healing is possible. I have to trust that when one story ends, a whole new one begins...  and that as one part of me dies, another comes to life. I have to trust that I will love and appreciate the car sitting in my driveway just as I fell so deeply in love with Stanley after allowing myself to go through my it's-too-much process.

So today, I'm Humpty Dumpty...  picking up the pieces again, and rebuilding myself with radical trust (and probably oil pastels). Reclaiming my power. Remembering my WILD. Honoring the waxing and waning of my own spirit. My friend Paula recently gave me a sticker for the window of my car of women in a circle....  it's been sitting on my desk, as somehow I knew it wasn't meant for my old car....  I think it's time to go put it on the new one.

In the meantime, I have a week off of antibiotics with hopefully more energy....  and Thursday, I will meet with my doc to find out what the next "phase" entails....  and trust that it will all be okay. And then we pick the kiddos up from camp. It's WAY too quiet around here. It's just too much. ;)

everything is a miracle

Well, we're starting off Round 3 of the "incubation phase" a day late....  due to some scary happenings. I've been fighting off a cold for the last few days, and Sunday night, I got up with a stuffy nose around 2am and took some Cold Snap and some oregano oil capsules...  thinking I could ward it off. Well, as far as we could tell two hours later, that stuff should maybe not be taken on an empty stomach! I woke up at 4am feeling very nauseous--  ran to the bathroom, with Deena following right behind. I sat on the edge of the bathtub, and began feeling like I was going to pass out. Deena held me up, reassured me, and encouraged me to take some deep breaths.

The next thing I remember is hearing Deena yelling. It sounded as though she was far, far away, or talking through a long tube. She was yelling for Zoe to call 911, and calling my name. Eventually, her voice got closer, and I began to come out of what felt like a thick fog.  I was no longer nauseous but was very shaky.  Luckily, Zoe hadn't woken up enough to actually call 911.  Eventually, I was able to hobble out to the couch where Deena and I spent the rest of the early morning hours watching House Hunters International, trying to distract ourselves from what had just happened.

I had never fainted in my life. Not only that, but when Deena described it to me later, in tears no less, we realized it was more than just your average fainting spell. Here's how it went from her side of things...

When I said I felt like I was going to pass out, she didn't believe it would actually happen. And then it did. And evidently,  I started to make very loud gutteral grunty sounds.... she tried to hold me aimed for the toilet, thinking maybe I was going to throw up... but then, my body flung to the side,  my eyes rolled back in my head, and one of my arms flew up into the air, while my fingers curled up in some weird, monster-like fashion. Then, all of a sudden, everything stopped....  my body became limp in her arms. My eyes and my mouth were open, but she thought I had stopped breathing, and evidently, I looked lifeless. That's when she yelled for Zoe to call 911.

Hearing that just a few weeks shy of when one of my online friends collapsed and died for no apparent reason whatsoever jolted me to the core.

But I'm fine now.

One doctor said it was probably what's called a "convulsive syncope," which is a seizure-like episode that can happen following a faint, while another called it a "vasovagal response"-- both of which are pretty harmless as long as you don't fall and hit your head.  I have since had a normal EKG, a brain check-up, and a good lookin' over, and I'm no more worse for wear, except for this darn cold that has this natural-medicine freak begging for Nyquil.

The thing is, to both Deena and I, it didn't feel so simple. She will forever have that one moment etched in her brain, when she thought I wasn't breathing. And I can't shake the feeling that she "called me back" from somewhere I might not have returned from otherwise. While I know that sounds rather dramatic, truth is that it was weird, intense, and has left us both teary in one another's presence, feeling so lucky to have one another, and grateful to be alive.

So while I was supposed to start another week of antibiotics yesterday, we put it off until today...  until we knew that I could indeed handle it. This is the last round of the induction phase, and then in three weeks, I'll be meeting with my amazing doc and determining what comes next. She thinks I'm responding well thus far, after finally finding the right drug combination. Aside from the worst cold I've had in YEARS, the herxing today hasn't been too bad (knock on wood).  It's primarily manifesting as very sore and tender elbows.  Tomorrow I have a magnesium IV that will hopefully help with that.

I just want to be able to BREATHE, dammit. There are only so many times I can do the neti pot in one day! Luckily, I have the okay for some Nyquil at bedtime.

This week's protocol:
Tuesday, Thursday, Saturday:  minocin, ceftin, & septra (increasing my evening doses)
Friday & Saturday:  flagyl

a week off!

I'm so happy to share that this is a week off of antibiotics....  I love not having to base my entire schedule on a pill box, or feeling like my "job" is to tend to Lyme. I love having an appetite, more energy and less pain. I love being able to think a little more clearly--  over the weekend, it was like I was very slowly emerging from a dense fog. And I love noticing any very subtle changes that might be happening in my body. Yesterday, Noah and I went for a run/walk around the lake (he ran, I walked)... I was able to make it around three times! A far cry from a triathlon, but last week, I was only able to walk around it once.

The problem with these weeks off is that I tend to swing way into the other extreme of things. I overdo the exercise, I make plans that I likely won't be able to pull off anytime soon, I dream BIG.

I printed out this great summertime list for the kids....  it's a "no screen-time until" kinda thing....   encouraging things like reading and spending time outdoors and doing creative things, and even doing a little math! I giggled at myself this morning as I was telling Deena about it. While I'm highly motivated now that my head's a little clearer and my body isn't distracting me so much, truth is, next week when I go back on the meds, depending on how I'm feeling, our summertime schedule may wind up being a free-for-all, do-whatever-you-want kind of thing.

I also got out my very unorganized binder of recipes, and yesterday, swore to make it a summer project to get it organized and to actually COOK.  We'll see how that goes..... tee hee.

I also started to think about my circle. During these weeks off, it's easy to think, "Well, by January, I'm surely going to be feeling so much better. I could do this, I could do that...  so I might as well start planning it now. "  However, last week, just days ago, I was having an existential crisis of sorts...  wondering if I'm "supposed" to be focusing on other things, and questioning if I even want to go back to doing what I was doing. I imagine that for most people, living with a persistant illness of any sort is like tossing all of the elements of one's life up into air and waiting to see where they end up falling...  and I am certainly no exception!

So this week, I'm trying to be deeply present. I'm trying not to get ahead of myself, and I'm trying to sit with the questions rather than rely on answers that will inevitably change from week to week and day to day. I'm trying not to overdo, yet I'm also focused on not taking these clearer more energetic days for granted.

That's me in a nutshell. :)

round 2, week 2

I've been avoiding writing anything the last couple of days because I don't want to jinx anything! This week, we're increasing the Septra (Bactrim), but leaving the Ceftin as is.... and so far, the herxing has been much more tolerable. It's funny how I find myself waiting for the other shoe to drop!  It just goes to show just how unpredictable this whole process can be, as a week ago yesterday and today, I was pretty much couch-bound, wondering how the hell I was going to do this for atleast a year.

In other news, we had out little "Take a Bit Outta Lyme" potluck this last weekend....  it was the first time I had people over in I don't know how long, certainly since all of this began. I went into it extremely unprepared, so Deena and I were running around like chickens Saturday morning trying to get everything ready. She cleaned while Zoe and I made a bigger mess in the kitchen, making mini-vegan-keylime pies.

Not as many folks showed up as we had expected, but even so, I realized just how isolated I've been the last few months, and how good it was to reconnect.  We hung out, sucked on limes, and watched Under Our Skin.... which was pretty interesting now that I'm undergoing treatment.  I noticed things in the film that I hadn't noticed before, I suppose because I could relate to it in a more tangible way. One thing that stuck out for me was the idea that Lyme can be fatal if left untreated. That's not something I ever let myself think about before, but I tell you what...  after last week, it made the challenges of treatment that much more bearable, knowing that I'm doing what I must to get rid of the little boogers.

I also had my LAST appointment with the mitochondrial disease specialist. I'm happy to report that my genetic testing came back, and that I don't have mito. There was one more test she wanted to do, but I'm done wasting anymore time and money and energy on that. My results did show that I have a couple of gene mutations that "could" be responsible for my aches and pains, but there was nothing definitive...  and it became abundantly clear as we talked that she doesn't believe that I have Lyme. So with that, I bid her adieu!

I'm feeling very blessed.

This week:  
Monday, Wednesday, Friday:  Minocin, Ceftin, Bactrim
Thursday & Friday:  Flagyl