what's to come

After a long break in treatment due to gall bladder surgery, and then finishing up the Lyme/Babesia targeting phase, I saw my lyme doc this morning for the first time in what seems like months. It was a tough appointment. Not because we're not on the right track and it's all going to hell in a ham basket. But because I am emotionally just worn to pieces. It's been a very FULL few weeks here in my world, with a sick cat and a home study being done so that Deena and I and our kids can be a family in the eyes of the law (after we've really already been a family for going on eighteen years), along with the usual trials and tribulations of being mama to a 12-year-old-boy-going-on-16, and a daughter who is currently taking driver's ed, and gosh darn it, why hasn't HGTV called us yet to let us know that we've won our dream house in Asheville?

Deeeeep breath.

Every time I meet with my doctor and go over what's to come, I get overwhelmed and emotional. This time was clearly no exception. We are about to jump into the harshest phase of treatment that hopefully I will ever have to experience.  This next phase will also be the longest....  a whole freaking four months long.  This brings more grief up in me....  about circles I'll need to continue to put off, about where I imagined I would be and how I'd feel next spring, about, well, everything.

Not only that, but no more dilly dallying diet-wise...  she wants me to omit even more things....  which is overwhelming to me not only because I'm admittedly a carb addict, but because when I'm on these meds, it's like my taste buds get all messed up, and I am extremely finicky about whatever I put into my mouth. As many of you know, I'm already a very healthy eater for the most part....  but honestly, sardines and bone broth and cauliflower don't sound so appetizing right now.... even though I usually love them. And to top it off, eating the way I need to eat right now requires a lot of cooking time (and energy). Deena was so sweet, trying to comfort me and telling me that we'll cook together on the weekends and that she'll eat sardines too....  but the truth is, we have two kids who I can tell you right now will not eat sardines.

Well, shit.

This I know. I've done it before, and I can do it again. I have paleo and Wahl's protocol recipes and cookbooks up the wazoo. I know how to implement it. And damnit, come hell or hight water, I will.

I know I sound a bit gruesome right now.  Will someone please pass the tissues?

But there's good news too. My doctor, probably due to my obvious tear-stained overwhelm and the intense looks I gave her every thirty seconds during our two hour appointment, has decided to put me on the "easier" abbreviated version of this next phase...  you see, it's all relative.  I can be bummed that I have to do it to begin with, or I can be grateful that I'm not doing the harsher version of it.  I guess I'm somewhere in between in this moment...  and hope to be more on the grateful side perhaps tomorrow, once all of this has a chance to sink in....  of course, I might have to be reminded of it all being relative once I start the meds.

But I don't have to take anything today or tomorrow or for the next 11 days. And actually, my doctor also encouraged me to take an additional week off (again probably due to the fact that I was weeping through much of our appointment)...  so really, it's more like 18 days free of meds. Hallelujah.

So for this eighteen days, I'll be focusing on diet. And savoring this imperfect life as much as I possibly can.  And tonight, I'll go see Liz Gilbert with my daughter and some dear, dear friends, and hopefully won't cry through the entire thing.

( I really wanted to come on here today and NOT write about Lyme. I really wanted to write about my session with Fancy the therapy horse yesterday. But for now, I'll save that for another day, or maybe for my other, less Lymey blog.  In the meantime, that's her in the picture above....  I wish so badly that I could spend some time every day with her. )

BIG

I had my post-op followup yesterday, and I'm healing up just fine, and most of my restrictions have been lifted. The only time I really have pain now is when I sneeze. And when I say pain, I mean PAIN. But atleast it's shortlived.

I'm also back on track this week with my meds... I'm feeling pretty tired today, after not having slept well last night, but other than that, I've surprisingly been feeling pretty good. I wonder...  could it be that a whole bunch of the lyme was hiding out in my gall bladder and is now gone?  Keeping my fingers crossed that this is lasting...

My most troubling issue at the moment is that I'm feeling more than a little cut off from my creative self. I haven't felt like writing or making art. At all. I've been caught up in practical things, like laundry and grocery shopping and taking the dog for long walks in the sunshine-- I guess because for a couple of weeks, I couldn't do those things and I missed them. Goes to show how magical the mundane can really be if we just pay attention. And being willing to see the world that way IS a creative act, if you ask me. So perhaps I'm not as far from my muse as I seem to think I am.

One of the things I hope will shift this is that my friend Paula and I have decided to launch into a "secret" creative project together. And this feels good. Becuase my creative work is usually put out there in the world so openly...  and this time, I'm doing it just for me...  for the sake of tickling my creative funny bone, and getting me inspired once again to write and paint and maybe pick up my guitar a few times a week.  I think I've been resisting the small things lately, like art journaling and blogging and I've even gotten laxidazical about my nightly gratitudes...   because I'm feeling foggy when it comes to the vision of who I want to be in the world at the moment.

For a while, I kept thinking that in order to make sense of this illness, or to make it all "worth it," there needs to be something BIG to come out of it, like a book, a publishing deal, paintings that line the walls of galleries.... I was taught by all sorts of coaches to reach for my BIGness, and to never allow anything to get in the way of that.  But that's a hell of a lot of pressure that really doesn't amount to a cozy environment for healing the body and a tender heart.  I'm finding now that my mission is finding BIGness in the little things...  and discovering "success" inside of myself, rather than on the outside.

Speaking of big, I'll also be going to see Elizabeth Gilbert in a couple of weeks as she celebrates the release of her new book, Big Magic. I've only just begun to read it, because I'm reading that and Brene Brown's new book, Rising Strong, at the same time, which for me is somewhat like tackling a marathon, but I can't seem to put either one of them down! But I will say this... Big Magic is the book I've been trying to write for  the last, I don't know, five years (doggonit). Seriously. Although Liz Gilbert reminded me herself in a recent interview with Marie Forleo that "I'm allowed to add to the pile"--  meaning that yes, it's been done before, but it has not yet been done by me.  So I'm not giving up just yet.

I'm not sure where all this will lead me. Will I lead circles again?  I really don't know. Will I create a deck of wild woman oracle cards?  Hopefully, but I can't say for sure. Will I ever finish my book? Maybe, maybe not. All I can do in this moment is reach for the little things and tiptoe toward what makes me feel dreamy, trusting that eventually, the landscape will become clear again.

a post-op check-in....

I have been "checking out" a bit since Thursday's surgery, mostly resting and sleeping and resting and sleeping.  Even during the movies that my family rented over the weekend, and during the endless boardgames we played, it seemed that I took advantage of every moment when I could close my eyes, and found myself in a strange, drowsy twilight most of the time.

Today was my first day alone since the surgery, and I've found it necessary to surrender to this need for stillness and sleep, and I'm finding that I can no longer blame it on the pain medicine, as I chose to skip it this morning. It's a strange feeling to not get anything done. To just lay around and watch movies (or rather, sleep through movies) all day long.

Last week's surgery went the best it possibly could. It turns out the person scheduled before me cancelled their surgery, so when I arrived at the hospital, I was immediately caught up in preparations and paperwork, leaving me no time at all to be nervous. At one point, there were nine people scurrying around my little tiny pre-op room, all doing their thing...  taking my blood pressure, putting leg compressing stockings on me, asking about my current meds. It was a whirlwind....  and similarly, what is usually a two hour procedure wound up being 45 minutes long--  laporscopic, as I had hoped. My gall bladder was not infected, but it was enlarged and inflamed, so it's a good thing that it came out when it did. I listened to a guided meditation and music the entire time, and I had my handy dandy wonder woman talisman with me as well-  not that I remember!  I was a very lucky woman, with a super sweet medical team on my side. The next thing I remember after they wheeled me into the operating room was waking up to a very kind nurse in the recovery area, asking me if I'd like some gingerale.

The best part about it all was having a four day weekend with my honey. The worst part was getting rid of the gas trapped in my belly and my shoulders. My friend Whitney came and did her acupuncture magic on me, and that helped tremendously. And now, after several days of relying on others to help me do the most basic of things, I am able to get myself up and down from sitting, I am able to go to the bathroom on my own, and this morning, I even accomplished putting socks on all by myself. Yes, this was huge. Still can't tie my shoes, but that will come in time....  :)  And I have to retrain myself to take deep breaths, as it's much less painful to breathe shallow, and then when I startle or laugh or sneeze, something pinches in there, but other than that, the pain is much better.

Originally, I had thought about taking this week off of lyme-related meds to give myself a breather, after cancelling everything else I had planned....  and I didn't jump back in where I had left off, but my doctor did encourage me to take just two antibiotics to keep my body "in the game" so to speak. They are easy peasy to take, and don't affect me at all....  so I'm happy to oblige, especially knowing that next week, we'll be able to pick up right where we left off, with one more round of the lyme/babesia phase part B to go before we head into the heavier stuff toward the end of October-beginning of November.

So I'm now gallbladder-less.  And it's given me a much broader perspective, as I consider where I am health-wise....  and for that, I am grateful. My dad will soon be having a knee replacement, a facebook friend of mind just underwent brain surgery, another friend is facing a startling increase in her MS symptoms, and next week, I will be back on some more intense meds, leading me to who knows where....  and we all just keep chuggin' along, hoping for the best, knowing that somehow we're being taken care of.

Forgive me for being brief, but I'm a bit uncomfortable sitting here at my computer, so I'm headed back to my cozy spot on the couch for more rest. If any of you locals want to stop by for a visit, give me a call....  I would LOVE that, as I'm here the rest of this week, resting!  Thanks to my dear friend and neighbor, Tracy, I have been relieved of pick-up duty all week long....  which is good, because I am just not ready to drive just yet. But I can tell right away that it's going to get old, real fast, this surrendering to rest. So come see me!

quick lil' update...

I don't want to spend any good amount of time posting about this...  frankly, it makes me feel discombulated in ways that make me seriously want to play Wordbrain and do crossword puzzles all day long, so that I don't have to use the emotional part of my brain! But I wanted to share, for those who are interested. 

I will be having my gall bladder taken out next Thursday, the 24th. The goal is to do a laparoscopy, and if all goes well, I should be able to go home the same day and recovery won’t be so bad. The surgeon did warn me, however, that because I put this off for so long (she referred to the gall bladder attacks I had back in college), and my gall bladder is SO full of stones, I may fit into the 5% who need a bigger incision (ugh!), and that would require a couple of days in the hospital and a much longer and more painful recovery. Sigh. 

I’m trying not to freak out, but I’m not gonna lie… it’s all sinking in, and I’m a bit stirred up.  I've only had one major surgery (a c-section), and that was a whole different thing...  I would up with a baby at the end of it. I imagine that as things sink in further, it will be necessary to ask for help with the kids and with food...  but I'm just not ready to go there right now.  

That being said, I also have to remind myself that I am not the "average American" as far as health and diet goes...  and that hopefully, it will be a quick and easy surgery because I've taken pretty good care of myself for a several years now...  and because, dammit, I am wonder woman, right?? RIGHT?? 

She also said I should be able to pick up my lyme treatment as soon as I’m able to quit taking pain medicines… so hopefully, if the laparoscopy is successful, I’ll be able to resume treatment within a week or two...  Keep your fingers crossed!!!! EEEEK!

monkeys and gall bladders

The trip to the zoo was lovely and challenging all at once...

As we started off on Saturday, we all had a sense of adventure planted deeply in our hearts...  we left good and early, planning to arrive as the zoo was opening at 10am.

Well, just about forty-five minutes or so down the road, we were stopped on the interstate...  turns out that during some blasting they were doing that morning, they had had a bit of a rockslide that closed both lanes. They suggested going back to Asheville, and then getting to Knoxville using a very roundabout way....  another guy told us about a back way we could go that might be quicker.  After some squabbling that nearly led us back home again, we chose the latter.

What was supposed to be a two hour drive wound up being just over four hours, through curvy mountain roads riddled with kudzu and confederate flags. We asked for an adventure, and adventure sure was what we got!

The zoo brought up all of the paradoxical emotions that it usually does...  the joy of being so close to wild animals, and yet, the fact that they are there in the first place broke my heart yet again. The elephants were particularly sad this trip...  they were separated for some reason, and they all seemed bored and restless, swaying back and forth as if trying to comfort themselves.

Eventually, we made our way to the primates, which as far as I'm concerned, is pretty much the only reason to visit a zoo. Most of the gorillas were inside hiding away, as it was quite chilly outside, but both new babies and their mamas were in smaller nurseries where we were able to watch them for a bit. They were adorable....  but the real connection came with the chimpanzees, especially the one pictured above.

When I got there, he was sitting near the window, examining his hands, and what looked like a little scrape on one of them. I sat down next to him, and we proceeded to show one another our hands for fifteen minutes or so, before I swear he made some sort of sign, and then rolled over onto his back. We hung out together for a while just like that, and then, just as the kids were getting impatient with me, he got up and walked away.

On top of the usual mixed zoo feelings, there was also the fact that I wore out a lot easier than I had during past visits....  still, I feel like I held up pretty good, and when we left, we headed into downtown Knoxville for lunch at Tomato Head, which was a slightly insane move seeing as how there was a BIG football game getting ready to happen, and we felt extremely out of place not wearing orange as we navigated our way through lots of traffic.  But it was a good healthy meal... afterwhich my body declared it was DONE.

So we headed to our hotel and relaxed. Luckily, the rockslide was cleaned up by the time we needed to go home the next morning.

I wasn't prepared for Monday morning though. A short weekend away after over a week off of meds felt like a vacation, and it's hard to get back into the swing of things...  not to mention that Monday also means it's time to make some important decisions.

I had my ultrasound this morning, and as I pretty much expected, the woman said it was filled with stones...  she said it was so full of stones that she couldn't see the inside of my gall bladder, but that the wall did not appear inflamed. Now I wait to get the official report through my general doctor's perspective, and we'll go from there.

The thing is, I've been here twice before, once back in college, and once about 4 years ago, when gallstones brought me to my nutritionist in another attempt at avoiding surgery. I've done gall bladder cleanses and I've changed my diet completely, and this time, there's not really that much more I can take out of my diet without feeling like I will be in prison for the rest of my life. Soooo...  I'm doing some hard thinking, and decided not to go back on my meds quite yet.

My friend, Whitney, who is also an acupuncturist, says that in Chinese medicine, the gall bladder is the "decision maker."  How ironic, eh? I can feel my gut leaning in the direction of taking it out (both physically and intuitively!)...  not that I want to, but there's something telling me it's time. I've already been emailing with my lyme doc, and she said while stones alone are not usually enough of an indication to remove it, my history with pain might indeed be, and that she'd rather it be an elective versus an emergency surgery.

If ever there was a time that I wish that all of my doctors and I could sit down and have a powwow, this would be it.

So now, I'm in wait and see mode. I'm in deep breathing mode. I'm in learning to trust my gut mode.  I'm in trying-like-hell-to-be-patient mode.  :)

choices, choices...

I've been putting off an update, because honestly, I haven't known where this week was going to take me, after having some assumed-to-be gall bladder troubles toward the end of last week. Thankfully, I haven't had any major issues since, but it does mean I'll have some interesting decisions to make in the next few days.

I saw my family doctor yesterday who ordered up an abdominal ultrasound. There's the possiblity of a HIDA scan as well, but my two doctors seem to be in disagreement about how important that would be at this point...  which of course is always a good reminder that everyone is going to have their opinion, but I'm truly the boss here, and am capable of listening to my body. While I have moments of feeling rather overwhelmed at the choices to make-- HIDA scan or not, start meds again on Monday or not, and quite possibly surgery or not-- I'm trying my damndest to go with the flow of how I'm feeling right now, which relatively speaking, is pretty darn good. These last few days,  I've had more energy than I've had in a good long while, and my muscle cramping and achiness has dwindled quite a bit! 

The week really took a turn on Tuesday, when the mailman came and brought me the care-package pictured above. This wasn't from anyone I know very well, mind you...  this was from the AMAZING Rebecca Galavan, a fairly new facebook friend who recently launched a project called Smile Boxes for Lyme (http://www.gofundme.com/smileboxforlyme). PLEASE check it out! This is not your average fund raiser...  Rebecca has lyme herself, and has had many challenges....  but she wanted to turn a sour circumstance into something that is a gift to many. What a gigantic heart she has, as she is raising money to send care-packages such as mine to lyme patients all over the country, to ease them from a little bit of their suffering.  This is not something I was expecting at all, and it brought me to tears as I opened it and saw all of the goodies inside...  pajamas, art supplies, probiotics (to a fellow lymie, these are priceless!), bath stuff, yummies. Let me tell you, to have someone acknowledge you in this way...  I see that you're struggling, and I hope this helps a little bit...  is simply magical. And inspiring. And moving beyond belief. And I intend to pay it forward in some way....  still stewing on what that may look like. 

One way is that my dear friend Terry and I have decided to throw together a Chronic Illness Support Circle!  We will be having our first gathering here in Black Mountain on Sunday, October 4th. If anyone reading this is (semi)local and wishes to join us, just holler at me and I'll send you the details...  and you are welcome to pass this on too, as it's open to anyone. It feels good to have put the plan in place for this...  and I'm excited to see what it will become!

On Wednesday, I went to my first official equine-assisted therapy appointment, and met the horses! I'm fairly certain that this is going to change my life in wonderful ways. I wrote a whole blogpost about it on my other blog (http://www.sacredcirclecreativelife.com/heartstream/choosing/) ...  check it out if you're interested. 

Speaking of which, I'm tossing around the idea of narrowing back down to one blog....  I've been torn about this for some time, worried that the folks who read that one aren't necessarily interested in reading this one, and vice versa, and worried that perhaps I'm sharing TOO much...  but as I slowly regain my inner moxie and turn back to some long-awaited writing projects I have been wanting to work on, I'm reminded that really it's all coming from the same place....  and that consolidating would likely conserve energy for diving deeper.  I'm still sitting with this, but I'm suspecting that another change will soon be upon us, and I will let you know if so. 

In the meantime, I refuse to make any decisions until after we venture off to the zoo tomorrow to visit with the gorillas!!!  Squeeeee!!!!!  

who were you?

I am continuing this process of shedding and releasing.... and thankfully, I now have a couple of easier weeks of treatment to keep me headed in that direction. The only thing I'm currently taking is Coartem, yet another anti-Malarial drug for targeting Babesia... I only have to take it for three days, and then I have a WHOLE ELEVEN DAYS off!  I've been having some somewhat debilitating pain in the form of muscle cramping and joint inflammation with this new med, but frankly it beats the last few weeks of nausea and intense lethargy. It's funny how perspective changes like that.  

With hopes that I'll be feeling pretty good during these upcoming eleven days off, we're planning on taking a weekend away in Knoxville to get our gorilla fix.  I have such mixed emotions about visitng and supporting zoos, but I do know that it's imperative for me to have opportunities to connect with creatures great and small--  it's one of those parts of me that has re-emerged in these last few weeks in BIG ways.  

Before the world told me who I should be, I wanted to be a zoologist. And I still have dreams about working with animals in some way. When I lived up in Boston during graduate school, I would spend hours at a time planted in front of the gorillas and chimpanzees at the Franklin Park Zoo. I would unpack my bag for them, and they would sit, their chins propped up on their elbows, eagerly watching whatever would emerge next...  a set of keys, a journal, a pencil, a hair-brush. By the time I left, there would always be a crowd of people watching, but I wasn't in it for fame...  I was in it purely for the pure, unassuming and mysterious connection with another living being. It made my heart happy, and simply smitten with the idea of inter-species communication. 

Ever since then, my visits to any zoo have resulted in similar connections, and have ended with my kids getting impatient and eventually having to tear me away from the gorillas against my will, when I would have been content to stay with them forever. I can't contribute these magical visits to being a gorilla whisperer or being gifted in animal communication...  I'm lucky if I can get my dog to sit!   I think what's it's truly about is being present...  deeply present...  both with these amazing creatures as well as myself. 

a visit to the Louisville Zoo in 2009

So needless to say, I'm ready to go and see what the gorillas at the Knoxville Zoo are up to.  Evidently, there two new babies, born just a couple of months ago... I'm hoping for some time to see them and perhaps have a little game of peekaboo. 

In the meantime, I'm settling for some more domesticated animal bliss....  Friday, I'm headed out to the boonies to visit with an Equine Assisted Therapist. I'm so very excited about this, as I can't imagine there's any better way to get my head back on straight!  It's also given me the opportunity to become comfortable again asking for help, as I'm not sure I'll always be able to drive myself out there. Thankfully, a couple of friends have stepped up and offered to take me when I'm not up to it. I am so very grateful. 

Speaking of asking for help, I've been really loving being on the other end of that equation this last week or so, and being able to put my energy into helping others rather than into my own stuff. In just a few minutes, I'll be headed up to my neighbor's house to give Tinkerbelle the cat some medicine after she gave us all quite a scare a few days ago with what is now presumed to be just a little ole bee sting. With my neighbor being out of town, we spent most of Sunday at the local emergency vet with Tink, and now, that kitty and I couldn't be any more inseparable! What a gift after finding the other neighbor's dog last week... and what a beautiful reminder that helping is actually a priviledge, not a burden. 

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.

belonging

Round 2 of attacking Babesia has begun! This is the hardest it's been so far, going back on meds after a week off. There's been a lot at play this last week or two--  a sick kitty, summer heat, and my hormones have been out of whack, which isn't helping me feel any better.  Toward the end of my week off, that old familiar fatigue began to creep back in, and then after resuming all of my meds yesterday, the fatigue increased tenfold, my joints hurt, my head ached, and I have been once again bombarded with a mild yet persistant nausea. Thankfully, today is better, but I definitely sense the need for a nap!

Honestly though, I find my biggest challenge this week is allowing myself to be REAL from one moment to the next, which inevitably means moving through a lot of emotions.  Like this morning. The cat puked, and I started to clean it up, and my legs were too weak to squat down. So I had to sit down on the floor to clean it up, and then my shoulders and elbows hurt so bad I had a hard time getting up again. I burst into tears, like a toddler whose lollipop just fell into a pile of dirt. There are moments that I still can't wrap my mind around all of this. It's all too humbling when basic things like getting up off the floor turn so darn complex. I so easily forget that the pain waxes and wanes, and that this too shall pass, and instead, I just crumble.

Of course it runs deeper than the physical limitations...  I've noticed lately that it seems like this summer has been all about revisiting distant parts of myself that I miss. Taking the kids to camp a few weeks ago made me want to hike up to the bald or down to the pond...  things I just couldn't do. Noah and his crazy love for running brings back running memories of my own while training for the triathlon, juxtaposed with how my hip cramps up now just taking the dog for a short walk. And this week, Zoe and her Granddaddy are at the Swannanoa Gathering making all sorts of musical mischief, and I find myself longing for an escape like that, where I can forget about this disease for a week or two, and just collapse into a community of people who share a profound connection around their love of chords and picks and strums and open tunings. They both talk about me joining them next year, and I begin to wonder if I'll be better by then....  for now, my guitar hangs lonely on the wall because my hands are too tired and sore to play, and the mere thought of trying to get around in a place like that and being around that many people exhausts me.

At the same time,  I watch my Dad, whose knee is really bothering him, hobbling around like a champ. He is a stubborn cuss, who probably should rest and take it easy more, but I also feel a desire to be more like him...  to push past the pain and fatigue and stubbornly do what I want to set out to do. Last night, he and Zoe came here for dinner after a long day of music-making...  and all I had the energy for was throwing together boxed gluten free macaroni and cheese and frozen vegetables.  I just felt so wimpy and inadequate...  and yet, cooking something more was just simply not in the cards.

So when I say I'm struggling with allowing myself to be REAL, it's about navigating my way through  and accepting what I am and am not capable of right now. Again.  Haven't I been there done this before, gosh darnit? It's about being honest with myself around how much I can handle, which is different from one day to the next. It's about offering to others what I can rather than what I really want to offer.

It's also about owning my story as it unfolds, and allowing others to have their own stories too...  something I touched on a bit last week. But for the sake of being truly honest, I've noticed pieces of myself I don't like to admit are there....  like the one that feels jealous or resentful or even angry when I hear of someone treating their illness a different way and they're doing just hunky dory... and like the one that, when I'm having a good day, misses the attention and sympathy I receive when I feel crummy and thus somehow remains a victim, rather than reclaiming her power. I know these things are human, and fogged up and intensified by being in the muck at the moment, but they only lead me to doubting my path and the landscape of my own emotions and feeling like a needy, bitter ole woman. Sigh.

We (I) forget just how much self-forgiveness and being gentle with ourselves plays a role in healing.  We (I) forget that healing is like the peeling of an onion...  and that it goes much deeper than the medicines we choose to take, and that just when we think we've got one part licked, it comes back and presents itself as some sort of cosmic do-over.  We (I) forget just how strong we are when we're embedded in the muck. We (I) forget that even when it feels like we're idle, directionless, stuck, weak, that we're really moving right along, moving forward, toward feeling better and belonging to our lives once again. 
 
Belonging.  That words just feels so ripe for me right now. I want to belong to my life again. I want to belong to something larger than this disease. I want to belong to the creative energy of a tribe. I want to belong to my own ever-changing visions. But perhaps part of healing is shedding down all of the layers, like a snake, until we're completely naked of who we thought we once were...  so that we can truly belong to who we are right now.  Not a "comfortable" process by any means, but oh-so-neccessary. And if we squint a little bit and look at it in just the right light, it can even be exciting.

See?  Even in the muck, there are bursts of clarity.

This week's protocol:
M, W, F: Ceftin, Septra, Mepron, Artemisinin, & Enula   

greeting adversity with love

(by artist Leah Pearlman of Dharma Comics)

Just a few moments ago, I looked up from my desk and right outside my window, there was deer standing there looking at me. Being me, I immediately grabbed my Power Animal book, and re-familiarized myself with deer medicine...  

Deer is all about gentleness and love and grace and instinct and protection. All things that are really big for me right now. 

While enjoying a week off of meds and the added physical challenges that come with that, the emotional/mental/spiritual side of things have had the extra space to arise...  I've been trying to take every opportunity to greet adversity with love, and admittedly, this isn't always easy for me.  I'm needier these days than I feel comfortable being, quite frankly. And so adversity feels scarier, and I'm finding myself having to really put forth the effort on many levels to open myself to it, to witness it, to be with it....  with as much love as I can muster. 

In two weeks my honey is going to go to Indiana to visit her family. It simply can't be put off any longer. Her folks are getting on in age and have health issues, and I know to Deena, it feels like there's a bit of urgency in mending some tears in the family fabric. We hadn't been in quite a while due to a family squabble that happened four years ago with her sisters that was never resolved and never really spoken about since.  Deena and her sisters are fine now...  maybe what I've always assumed was their tendency to sweep things under the rug is really a stubborn resilience born from the willingness to let go, which is something I could perhaps use a little more of...  but who knows, and at this point, does it really matter? We are all just doing the best we can. 

So Deena is going without me, not because of the squabble, but because I am simply not well enough to make such a quick trip, as we don't have the time off or funds to make this a longer, more relaxed visit. And I also can't risk adding more stress to my body right now. And riding in the car while taking Mepron?  Uh, no.  It causes me to have motion sickness up the wazoo.

So in two weeks, she and Noah will load up a rental car, drive eight hours on a Friday, spend the weekend with her family, and then head back the following Monday. Bing, bang, boom, just like that. This has me feeling a bit more insecure than usual. It's loaded with my own sadness leftover from feeling scorned and judged by the sisters, and a continued lack of closure for me around all that... tripled by my fear of her leaving during a week that I'm treating and possibly feeling like crap... made even more intense by my worry about her driving all that way without help, not fully rested because she will no doubt be working extra hours before and after to make up for the time off... and topped off with the fact that this is going to put a dent in our finances, since her boss is unwilling to give her any more vacation time.    

Sigh. 

But sometimes you just have to do what you have to do, no matter how much anxiety comes up around it. I've gotten quite familiar with that these last months. And sometimes I'm not very good at it. Sometimes I just want to throw a tantrum. Sometimes I want to just bury myself under the covers, or escape into stupid (un)reality shows on Netflix and Hulu. And sometimes I want to keep my family home, safely tucked inside our house where lyme-carrying ticks and bears and grumpy people can't get to us...  

Just now, my eyes widened out of pure surprise at the fact that seeing that deer today didn't immediately trigger a hyper-paranoia around deer ticks!  I think that's an excellent sign, don't you? In fact, the deer that visited me today instead reminded me to face adversity with a gentle grace. With a humbleness and quiet and unconditional love that opens me and those around me, rather than shuts us all down, isolates us, or gives us the illusion of feeling safe and protected. 

So in two weeks, I will envision a light wrapped around Deena and Noah I wave them off with a smile that hides my tears...  and maybe I'll even make cookies or something to send on to the sisters. And Zoe will stay home with me. There will no doubt be take-out and naps and nail polish and a mushy movie marathon if anyone is interested in joining us. 

knocking on wood

This week has been all about knocking on wood. That comes with feeling good. Especially given the high doses of meds I am taking at the moment...  septra, ceftin, mepron, artemisinin, enula, and flagyl. I expected this week to be harder than last week...  but instead, I haven't had to take anti-nausea meds at all, I've been walking almost daily without trouble, and the other night, I even made a REAL dinner...  homemade chicken fingers and green beans. I think my kids have grown way too accustomed to frozen pizza and macaroni and cheese, as they were far less enthused by dinner than I was. Oh well. Until today, my only complaint has been that the thick bright yellow sludge they call Mepron haunts me...  its horrid taste seems to serve as a subtle backdrop to every other flavor all. the. time. Ginger chews mask it for a few moments until it seeps back onto my taste buds. And when I sweat or go to the bathroom, I smell it...  a chemical-y, plastic-y essence that hangs on everything. Blech.

Today, I'm feeling a bit more tender. Could be that I'm pms-y, or it could be that I didn't sleep well last night, or it could be that I've been overdoing a bit, or it could be just all those foreign things in my body having a cumulative effect. I also suspect that part of it is that my hands have been quite happily full since the kiddos came home from camp, and I haven't had a lot of creative down time. My knees hurt, I'm extra tired and sensitive, my brain is foggy, and I feel a little queasy this morning...  I have a feeling it will be a slow and gentle day. Part of me wonders if I should be pounding the wood instead of simply knocking on it!

Get this....  I found out over last week that my mother has Lyme, according to her acupuncturist, who discovered it via bio energetic testing (I really don't anything about this kind of testing, but Deena's boss's wife swears by it).  Honestly, I've had such a strange mix of emotions since hearing this.  I truly wouldn't wish this disease on my worst enemy...  so it's a bit heartbreaking that my own mother has to deal with it.  Not only that, but while she has begun treatment, it's a very different path than I am taking, using a natural, homeopathic approach.  And once again, I am finding myself needing to remember what I used to tell the Wild Women...  that it doesn't benefit anyone to compare our experiences with those of others... that we must fully inhabit our own choices without regret or apology, and trust that we're doing what's best for ourselves...  and here's the key...  we must allow others to do the same, without any assumptions that our way is any better or worse.

Here's the thing. I've never been the type to fall for prescription medicines. I've always been the hippie dippie,  all-natural chick. And the truth is, that hasn't changed all that much, which sounds funny coming from someone who is taking so many antibiotics at the moment. It's a strange and complicated paradox. It is in this way that my doctor is like a soul sister to me. She's an integrative physician's assistant who always took the natural, herbal route, and then happened to stumble upon her own ten-year battle with Lyme and was treated and brought into remission with a combination of antibiotics and herbs. So of course, that's her way of treating.  That's what she's familiar with and knowledgeable about, and she readily admits her bias while not discounting other ways. When I discovered her, it just felt right. It felt like I was in the best hands possible, and I wouldn't trade her ongoing support and guidance for anything right now.

The whole chronic lyme debate permeates the medical industry, making diagnosis and treatment next to impossible for many, and we are very lucky when we find someone who is able and willing to help us, even though our LLMDs and acupuncturists and naturopaths are often thought of as quacks by mainstream doctors.  Not only that, but even within the Lyme community itself, there are SO MANY different treatment protocols, and folks can be rather opinionated about them.  What it comes down to though is that we're all desperate for a cure, and the truth is, no cure has been discovered as of yet... even the top Lyme specialists are baffled by various aspects of the disease, and many are not supported or encouraged in their desire to learn more.

And of course, we all have different bodies that respond to different things.  Much like the ongoing argument about whether it's best to eat vegetarian or paleo, there is no one-size-fits-all way to go about this. One person's remedy is another person's poison...  perhaps that's a stretch, but the point is, we have to honor our differences.  We're all just trudging along doing the best we can, half-blind.  We need to accept that, not only for ourselves, but for others, and begin to build bridges within our stories.

I've realized that all in all, this is all forcing me to be deeply present and steadfast within my truth-- to honor my way, not as right or wrong, but merely as my path for now. And while I may knock (or pound) on wood from time to time, I will keep on trusting that my choices will lead this body to healing.