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.

the crazies

I was thrilled that on Monday, when I first took my meds and herbs, that I didn't get too nauseous. My tummy got gurgly though, and so I took one little Zofran and it seemed to do the trick to dissuade anything else from happening.  I am not a good thrower-upper. I fight it. The last time, I fought it literally until I passed out! So my doc, with an oh-so-endearing sneaky smirk on her face, has encouraged me to say a little affirmation each night...  "it's okay to throw up... it helps get the bad stuff out... it's okay to throw up...  it helps get the bad stuff out..."  

But honestly, I'd prefer just about any symptom over that.  Perhaps I should be knocking on wood about now?

Of course, I have had plenty of nauseous moments since that first day....  like yesterday, I woke up that way.  Not the kind of nausea that has you running for the bathroom, but instead, the kind that has you wanting to lie perfectly still so that you don't stir anything up. I was just fine as long as I didn't budge. It lasted a while...  I actually took the kids to a movie thinking it would be a good distraction, but it took me twice as long to drive into town, because I drove like an old lady, knowing that anything too jarring might rock the boat. Even the previews were a bit much, especially the high-action adventurey ones where everything on the screen is moving.  So this must be what it's like to have motion sickness! Thankfully it passed by the time the movie was over....  and I was able to drive home like a normal person.

But by far my biggest issue this week has been the pain in my joints. It seems whenever I start a new medicine, my elbows, especially my right one, becomes utterly incapacitated, and my ankles are tender and sore.  It was the worst on the first day, and seems to be getting better, but I constantly have to remind myself to be gentle with my body. Perhaps that is the gift of the nausea/motion sickness...  it keeps me resting, slower, quieter.

On another less disgusting note,  I've talked to three separate friends this week who suspect that they have Lyme disease. I helped them each sort through their symptoms and options as far as testing and doctors go...  but what's funny is just how much it helped ME to support them in that way. As mentioned almost daily on the Lyme Support boards by people all over the world, this can be a lonely disease. Not only are you dealing with the unpredictability of how you'll feel from one moment to the next like most chronic illness sufferers, you are also right smack in the center of the big controversial tug-o-war between the doctors who believe it can be chronic and those who don't.  So sharing and supporting and helping makes me feel less alone and is important for my own healing.

Yesterday, NPR aired a show about Lyme Disease on the Diane Rehm Show. I will say upfront that it left me feeling quite pissy. There was a lot of misinformation given by two doctors who specialize in infectious diseases and strictly follow CDC guidelines. It was only when Dr. Neil Spector, an oncologist from Duke University, began talking that it really got interesting and familiar and a bit heated in moments. He was given a death sentence after unknowingly struggling with Lyme for a decade left him with only10% heart function, requiring him to actually have a heart transplant. His story is quite amazing really...  I did some digging, and found this really great interview with him on the People's Pharmacy.... incidentally it's free to listen to or download for the next couple of days, so if you're interested, check it out HERE. I've also ordered his book....  Gone In a Heartbeat:  A Physician's Search for True Healing.

Let me just say that if any one of you ever has a question about Lyme, please ask me.  And if I don't know the answer, I'll ask my doc. It's important that we start spreading accurate information, rather than the mumbo jumbo that sadly most doctors report. Like my neurologist who didn't want to test me for Lyme, because according to him, Lyme doesn't exist in North Carolina. Like those who tell you as long as it was attached for less than 48 hours, you're safe. Like those who test you with the Elisa, which is falsely negative 50-75% of the time. These things have been proven otherwise, but no one is paying attention. Some days I feel like a freak, like I'm touting conspiracy theories, like I'm just crazy....  sigh.

This week:  
Monday, Wednesday, & Friday:  Septra, Ceftin, Mepron (a bright yellow slime taken with a spoon that tastes like nothing but chemicals), & Artemisinin

nitty gritty from my appointment & a request for connection

I had my appointment with my practitioner today, and we're a go to move on into the next phase of treatment beginning next week!

The first part of the next phase is all about narrowing in on Babesia, which is a common co-infection of Lyme.  We don't know for sure if I have it, for the testing for it is soooo very inaccurate, but because I tend to have intense night sweats and headaches, we're making sure to include treating it in our protocol. As we treat, if these symptoms get worse before they get better, than it is very likely that I do have it.

The second part of the next phase will be all about attacking biofilms...  put simply, biofilms are a group of micro-organisms whose cells stick together and serve as a protective barrier, like a ball of slime that protects a parasitic infection at the core. Ew, right? When it comes to Lyme, it is thought that these biofilms protect the little boogers from the antibiotics, and because biofilms grow slowly and antibiotics generally attack faster growing infections, the meds can miss some of the Lyme spirochetes hidden and protected by biofilms....  this is one theory about why Lyme can be so very difficult to treat. Thankfully, my practitioner works with one of the top Lyme specialists in the world, who is studying these biofilms extensively and working to find ways to nail them!

I'm not gonna lie. I'm a bit nervous. We're upping the ante, so to speak. So included in my pile of prescriptions for antibiotics and anti-malarial meds are some anti-nausea medications. Yeehaw.  We are also adding some very powerful herbs to the mix, along with some Lactoferrin (first colostrum milk from cows) and Xylitol, which are, interestingly enough, both biofilm busters.  The first two rounds, we'll be slowly adding things.... and in the third round, as long as I'm tolerating everything well, we're going to give it an extra POW.

So there's the nitty gritty.  My practitioner thinks we're on the right track, that I'm responding well...  and now we just aim to keep it that way. I'm also working to address the mental and spiritual side of this journey....  I've been reconnecting this week with some yoga and meditation, and just received the book pictured above in the mail. It's written by a Buddhist nun dealing with chronic illness...  it wasn't until AFTER I ordered it that I found out she has Lyme! So I'm anxious to dive in...

This week, I've been off of all meds, so all in all, I've been feeling pretty good.  Even snuck in some quality time with a couple of friends yesterday, and tomorrow, we're getting back in the car and heading up to pick the kiddos up from camp, stopping to visit with my folks along the way. Divine timing, I tell ya! And yes, I have indeed fallen in love with the new car....  and what a relief it will be to drive it up there with no worries about whether we'll actually make it there or not! I'm actually quite excited, despite that there will no doubt be some 4th of July traveling stress...

Had some great talks with my friends Allison and Paula yesterday...  they are both soul sisters for sure...  we don't just talk about the weather. We get REAL, which is a great match for my newfound outspokenness.  And with their help I was able to realize something about myself...  I've realized that I've been isolating myself a bit. Some of that is because I don't want to be overly needy, me-me-me,  or a burden on anyone in any way...  and part of it is because I've been sensing that some of my friends and loved ones really don't know what to say to me or how to support me, and so my presence can make them feel uncomfortable.

I don't write that from a blaming place at all. I can understand this more than I'd like to admit. My dear friend, Willow, died of cancer a few months back...  but for months and months before she died, I had many opportunities to go and visit her, and had a lot of resistance to it. Yes, I was dealing with my own illness, and so her condition triggered my own fears....  but also, honestly, I wasn't sure what you say to someone who is dying or suffering...  it felt beyond what I was capable of.   Part of me regrets not going to see her, and part of me recognizes that I was just doing what I could do in those moments...  that's all any of us can do, really. I sent cards in the mail and messages to her online, but frankly, I'm not sure she got them or was able to read them.  I like to think that on some level, Willow knew how much I loved her when she died, but the truth is, who knows...

So I get it. And if seeing me makes you feel uncomfortable for any reason whatsoever, I invite you to share that in an email or letter, so that I can be buoyed by your love despite the discomfort... because silence can penetrate the soul in weird ways, and while I try like hell not to take things personally, I do it anyhow.  What can I say?  I'm a work in progress.  And walking around on eggshells doesn't really do anyone any good.

If you're wondering how I am, please call and ask...  please don't worry about it being an inopportune time, like if I'm too busy being sick or being mom or whatever....  if I can't talk, I won't answer or I'll ask you to call back later.  But if you don't call, I won't have known that you were even thinking of me,  and I am so very grateful right now for every little hint of connection. I truly am. Just knowing I am in your thoughts, especially as the road gets a bit bumpier, means the world to me.

To that end, if you haven't heard from me in a while, and you're wondering what's up, please nudge me.  If I'm having a challenging time, invite me out, or invite yourself over. That's a hard ask for me, but it feels necessary. So there it is.  Sigh.

I confess, I am not used to being taken care of.  I am one who likes taking care of other people, who likes being on on top of things, and who doesn't like causing other people to worry. These last few months without my circle have been a real eye-opener around that... it's been excruciatingly uncomfortable! Sometimes hearing concern can feel vulnerable, and sometimes receiving help can be terrifying...  and so I wind up not asking for much.

I know everyone's busy with their own stuff, and admittedly, my tolerance for being social in any capacity varies depending on where I am in treatment....  so I get it when we can't get together face-to-face.  Phone conversations or texts are better than nothing. And if you do find yourself with some spare time and ever want to come over here and watch a movie with me, or take a mellow walk around the lake with me, or on my really bad days, sit and cuddle on my bed and play board games for a couple of hours to distract me, I would LOVE that.

My kids pretty much have all that covered when they're home, and so this summer has been extra extra sweet, but soon enough, they'll be going back to school, and I want to ready myself for that now...  with the clarity born from these two weeks of them being away at camp.  And let's face it too...  and if you're a Mom, you already know this...    grownup conversation is quite important.  :)  Especially when we can both be real with one another.

This is all still unfolding within me, so there may be more to say later...  but that feels like a good beginning...  it feels good to get some of this out...

What about you? What do YOU need?  How can I support you in this slice of time we call life???  I don't see myself as having it better or worse than anyone else...  we all have our shit going on.  And doggonit, I love you.