bear medicine and rebuilding foundations

Over the last week I've seen two bears...  and on recent trash days, it's been clear that they've been around much more than that, due to the messes they've been leaving around my neighborhood...

The animal medicine cards remind me that bear is all about introspection...  she's about seeking truth and inner knowing, intuituion and instinct. And in some ways, lately, now that the kids are both back in school, I feel as though I've been hibernating, hiding away deep down in the cave of my own longing...

Week 2 of the 3rd round of the 2nd phase has been a little easier than last week... thankfully, I'm not taking quite as much stuff. I am experiencing some loss in appetite, some belly aches, some mild headaches, nausea, and fatigue....  but I'd say that even more than these few physical symptoms, I'm mostly feeling it emotionally this week. Interestingly, I've noticed that my heart feels more open, like a window letting in the breeze and warmth of the sunshine.  I seem to feel love and compassion a whole lot stronger, which feels really good....  but I also feel everything else a lot stronger as well....  and some of those things aren't nearly as pleasant.

It doesn't help that I've a had a couple of blows this week, including going over to my neighbor's house to let her dog in, and finding that her beautiful black lab, Maggie, had passed away.  So, so sad....

I also have to admit, I haven't been able to completely let go of what happened last week with the carpool situation. I still hurt from all that, not so much from the woman who called that day, but from there seeming to be no carpool at all at this point, as it seems that I've been dropped by all of them now.  And so I've been picking up both kiddos every day since school began... which even though has had me feeling a bit nerdish and left out, has ultimately been fine, and dare I say, even welcome... for now. I'm just not sure how long I'll be able to keep it up, and I struggle within myself as I try to decipher if things are truly okay, or if they just have to be okay, because that's the only option there is.

I suppose I'm feeling extra sensitive to what feels like the loss of friendship and tribe, as I find myself questioning and trying to understand the motives and intentions of those around me, and moving in and out of a screw-the-world kind of place, not wanting to trust anyone. I'm tired of bullshit and pretense and dancing around my illness so as not to make others feel uncomfortable. It's exhausting. And while I have such a rich online community that seems to really care, I'm tired of wondering why so few of my local friends call me up and ask how I am. Is it just that Lyme disease is so very misunderstood? Do people not realize how very hard and lonely this journey can be? Or is it just me, clinging to the struggle?

And so I come stumbling back to the red thread again, and remember that all I need to be responsible for is me, this spot right here, and that their story is their story, not mine. And it comes down to owning my own life, trusting my own inner mama-bear knowing, and choosing in this very moment what I wish to surround myself with....  and that is truth, deep caring, shared vulnerability, getting down to the bare naked nitty gritty of what's real and meaningful, loving and sustainable.

And so I'm doing some letting go and deconstructing of some of the illusions that I've built up around myself. I'm emptying myself of extraneous stuff. I'm paring down my address book, and letting go of people who don't seem to give a flying fig about what's going on with me. I'm cleaning out the cabinets and getting rid of the food that no longer nourishes me. I'm releasing more pieces of my business, sending out my last newsletter for the time being, simplifying my website and blog.

I don't like how "final" it all feels...  but I know underneath my fear that it's only as final as I want it to be. And I also know, without a smidgeon of doubt, that it's a necessary step in my healing, even though I seem to always be surprising myself with what I'm actually ready to release. It's as though I'm knocking down an old, torn up house in order to build a new one... going through the rubble and determining what boards and nails may be salvagable, and questioning if it's worth the risk to use them again...  tearing down every last piece of what I've always seen as my foundation, in order to create a new one that is strong enough to hold me and all that I've ever dreamed of.

This week:
Monday, Wednesday, & Friday--  Ceftin, Minocin, Malarone, Artemisinin, and Enula

counting the blessings

It's been a rough week. Just when you think you've maxed out on the yuck, there it is... more yuck. Emotions turn into headaches and nausea and achey muscles so easily. And yet holding in my emotions right now is simply not an option as the meds attack the boogers in my brain and leave me wearing every little piece of my heart out on my sleeve. And the taste of all of the meds that I can't shake from my tongue continuously irks me and stresses me out, leading to more emotions, leading to more headaches and nausea and achey muscles. It's a vicious cycle. And so now that the kiddos are both back in school again, I going to try to get back into meditating...  be vigilant about avoiding stress...  be very choosey about how I spend my time... and am hoping to go for some equine-assisted therapy, after Deena drove me to a neighboring farm last night to visit with the horses after I lost it a bit when Noah jokingly locked me out of the house. Their presence was so very soothing for me, and this calls to me.

And once again, I find myself revisiting the intense discomfort around asking for help. It's so very difficult to not feel like I'm asking too much, or like I'm taking advantage of people. It takes everything in me to trust that there is no scorecard, to shed the guilt of not being able to reciprocate right now and be grateful, and yet, I find myself baking cookies when I can barely stand long enough in the kitchen to do so, gifting chocolate, writing thank you notes, giving away my art, and doing whatever else I can to somehow make up for just a fraction of the help I receive.

A couple of days ago, I received a phone call from one of the kind people who was helping me get Zoe home during her first year of high school. It wasn't an ideal situation...  I still had to drive the twenty minutes or so to meet them on the outskirts of town, but for the most part, I was able to avoid the chaos of downtown traffic, and for them, it was on their way home. Unfortunately, when I had to venture in and pick up Zoe all the way in town, I wasn't able to give rides home to all of the other girls because there was less room in my car due to my having Noah with me as well...  and so I helped out as much as I could... got out of my car to thank them each time they dropped off Zoe except for those days when my body wouldn't allow it... and baked cookies...  and bought chocolate... yadayadayada... but evidently, it wasn't enough.

It turns out that she and one of the other moms had been talking, and had come to the conclusion that it was no longer fair that I wasn't doing more of the driving. Mind you, as school was inching closer, I was already in a panic about driving the shorter twenty minute jaunt as my treatment gets harder, and now this. So this (brief, because I ended up basically hanging up on her) phone call seemed to throw me off of the edge of an emotional cliff. I found myself questioning every relationship, every favor, every intention. Weeping uncontrollably. Feeling like there was no one out there to lean on. Finding myself wanting to scream, "You wanna know what's not fair???  Fucking lyme disease is not fair!!! Losing my business and my income is not fair! Losing my ability to go for a hike or do a normal yoga pose or write without getting a headache is not fair!"

A good night's sleep and some amazing compassion and kindess from my facebook friends brought back some perspective...   thankfully out of loser-ness, and into gratitude again. The fact is, we never know what another person faces...  and it's not my job to presume what her story is.  I used to find so much pleasure in people-watching and creating sagas in my head about where folks were going, what they were doing, who they were underneath the surface of their bodies. But those were my stories, not theirs. And so while I'm not completely void of the hurt I felt after the phone call, I can atleast remind myself that she has her own stuff going on, and that her words were really not about me.

But truth is, I'm terrified. Today is Zoe's first day of school, and I will be going all the way into town to pick her up later. I'm not sure how I'll be feeling. The addition of xylitol and lactoferrin this week has really intensified things, as they are biofilm busters, and evidently, I've got some biofilms goin' on! Yesterday, I had a mild fever and a dull headache that just wouldn't go away. Last night I had a dream that someone shot me in the head, and I woke up this morning with the same doggone headache. I've been chugging so much water that I have to pee every five minutes and it's better now, and I am hoping that the upswing will continue. Deena assures me that if come this afternoon I am feeling really bad, she will either pick up Zoe herself, or find someone who will....  and I trust that all will be well. But I'm still a bit shaken, wondering how we're going to cope as we head into the most intense treatment phase of all, not sure if I'll be able drive at all.

But despite all that, there is much to be grateful for... and what I'm really here to do today is to count my blessings.

There is my friend, Carol, who I've known since our daughters were still growing inside our bellies, who is willing to help in whatever way she can, and who is like family to me.

There is our neighbor, Tracy, who has the biggest heart I've ever seen, and is willing to drop everything and pick up the kids if she's not already busy, and always comes out for a catchin' up if she's home when I'm out walking the dog.

There is Marna, who emails me a sweet love note every single time I write something on this blog, and Carol, who almost always responds with supportive and compassionate comments.

There is Jaci, who spontaneously invites us to swim in her pool and offers up other healing things as well, and just makes me feel so loved even though I hardly ever get to see her.

There's Anne, my doc, who always answers my emails, and confirms that yes, this sucks, and yes, we are on the path to healing, and urges me to cry and get it out and reminds me of the spiritual journey I am on.

There's Terry and Paula, a couple of the wild women who continue to humble me by their love and deep friendship long after circle is over, and there are all of the other wild women who conintue to tug on the red thread from time to time, reminding me that we are still connected.

There is Whitney and Missy, who even with their own lives being topsy turvy, both pause to send me  texts letting me know they're thinking about me and reminding me of my own power.

There's Kyeli, who skypes with me every two weeks from across the country, and Brandie, who occasionally sends me a card in the mail, and countless, dear and precious people on Facebook who are always looking out for me, even though I will likely never meet many of them in person.

There are my parents and Deena's parents, who are constantly helping to fill in the enormous financial gaps with me not working and needing all this medical care. Although their profound support doesn't stop there...  I'm not sure how we ever got so lucky to be born into our families.

There is Zoe, who is always willing to overdose on games of Parcheesi with me just to distract me from my pain, and there is Noah, who makes me laugh with the quirky things that come out of his mouth, and inspires me with his own ferocious appetite for health in the form of a six-pack.

There's Deena, who loves me more than I ever imagined anyone loving me, and who is always there, no matter how crazy I get.

And there are so many more that my lyme-brain won't let me remember at the moment.

I am so gosh darn blessed.

moving with change

"Moving with Change" by Lisa J. Rough

I am soooo happy to be finishing up round 2 of phase 2 with a week off of meds.  Hallelujah. However, while I haven't had any nausea to speak of, I have been having more pain and fatigue than typical for these weeks off. Hopefully tomorrow's magnesium IV will help with that. I think a lot of it is due to a sense of surrender I've been feeling as an oh-so-subtle hint of autumn rolls through the mountains. These last few months have been kind of crazy with summertime shenanigans, and there have been moments that I've completely surprised myself for being able to keep up. I think my body is now like, okay, I can relax now!  Camps are over, family visits are over, and now that Deena and Noah have returned from Indiana, we don't have to travel anywhere for a good long while. 

Honestly, the summer has had me clinging to anything that made me feel "normal," and this last weekend, I crashed emotionally in a big way when all normalcy went flying out the window. With my honey gone and pretty much out of reach, and our back-up supports booked up with their own plans, I found myself wallowing in a sense of abandonment...  confusion...  lonliness...  wondering where the hell I stood in my own life. A healing crisis of sorts, I suppose. Thankfully, by Sunday, I was able to pull myself out of the shadows, and had such a special day with Zoe, who had been witnessing my weepy, self-pitying moments all weekend long. We went to the local Sourwood Festival and got inspired by some amazing artists and entered to win a tiny house and ate gluten free cupcakes, and then we came home and painted for hours on end. 

Phew. Change, whether it's big or little, short or lasting, can certainly be hard... and these days, I'm learning that with Lyme disease, each shift brings with it a whole new, even more intense  slew of challenges. 

Noah is getting ready to go back to school tomorrow, and Zoe will be going back next week, so I find myself in that familiar spot of needing to adapt once again, to get back into a routine, and to dig my heels in and think about how I'm going to spend my time and energy... 

I have decided that it's not yet time to plan a yearlong wild woman circle for next year, with so much uncertainty regarding my treatments. The reality check of what's to come at my last doctor appointment made me realize that it's just too much to add on to my plate at the moment...  that I must ease back into my work slowly, and only when I know I'm ready. This has led to a hefty amount of grief in and of itself. 

When I decided to take this year off, it was clearly a yearlong healing sabbatical.  Now that I've realized that it's necessary to extend that further, I have moments of wondering if life will ever be normal again... However, this painting I did this weekend reminds me of how it sometimes feels to move with change... it can feel pretty bumpy and scary, like riding bare-back, and we find ourselves clinging to that mane for dear life... but once we surrender to the rhythm of the horse, it can be so very freeing.... 

In those moments of surrender, I put together a packet of submissions for the 2017 We Moon Calendar... I've opened up a new Etsy account where I hope to eventually sell prints of my work... I've thought about starting a local lyme/ chronic illness support group....  I've signed up and started to explore MeWe, a new social networking site that seems more intimate and authentic, as I contemplate the need to rebuild a tribe for myself... 

Because the fact is, things will just keep on moving, no matter how hard I cling to "normal"...  and so it's time to create a new legend for myself. 

a slice of the journey

"Self-Discovery" by Rita Loyd....  www.nurturingart.com

Week 2 of Round 2 of Phase 2...  that's gotta be good luck, right?

I had my doctor appointment on Monday...  a time to check in, introduce my doc to my parents who were visiting, and plan out the next several weeks of treatment. Aside from intense fatigue and some slightly elevated liver enzymes, I'm doing pretty well. Although I will admit, if I had written this morning, it may have been a completely different story, as I had a particularly hard time taking my meds today. Thankfully last week, I was able to switch from the Mepron (the nasty bright yellow sludge) to a similar medication in pill form, which is soooooo much easier to take. But I'm still finding that when it comes time to take everything, my body is starting to rebel....  I get nauseous before I even swallow a thing! I hem and I haw, which makes it worse. Every part of me wants to resist. I'll need to find a way to push past this, as I'm told it's only going to get worse as time goes on.

After next week, I'll have two more rounds of this phase...  we'll be adding some things, so they'll likely be a bit more intense. And then after that, as long as I'm still doing well, it'll be time for the REALLY BIG guns. My doc is very honest with me when she says it will be brutal. I'm feeling nervous about it, but really all I can do is come back to right now and not get wrapped up in what's to come.

And truthfully, right now is hard enough. It's a constant challenge to stay in a positive space. I find myself back in that place of feeling like my visions have been all fogged up and muddled...  that my work and the business I created from scratch is no more...  that I have no direction...  that aside from my familiy and my doctor, my support system is waning. Deena worries that I'm depressed....  I prefer to think of it as uncovering another deep well of grief. But I know for certain that beneath it all, even when I'm weeping and feeling sorry for myself, that those things are not gone forever... I know that they're simply peeling away so that I can return to the bare bones of who I am.

Things are about to change once again... Deena and Noah will be going to Indiana for a few days this weekend, and then school will start up next week. I both welcome and dread it. I welcome the time alone to get back to some regular writing and art-making, and the flexibility to rest when my body demands it...  and I dread missing them and feeling swallowed up by an empty house, and figuring out the whole school pick-up thing all over again.  I welcome a sense of routine...  and I dread not being able to sleep in if I feel like sleeping in, and the magical spontaneousness of summertime. I welcome the space to allow my body to speak to me and say no to things that are not conducive to healing... and I dread feeling the pressure and angst when I have no choice other than to pull myself together even when I feel like doo doo.

In the meantime, Zoe and I have plans for music-making and art-making and mushy-movie watching and toenail-painting while we have the house all to ourselves this weekend. And I will try not to be a worry-wort...  but please, if you can spare some easy and safe traveling vibes for Deena and Noah, I would be most appreciative.