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.

humpty dumpty

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

everything is a miracle

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

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

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

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

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

But I'm fine now.

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

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

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

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

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

a week off!

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

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

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

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

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

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

That's me in a nutshell. :)

round 2, week 2

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

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

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

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

I'm feeling very blessed.

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

blessings in disguise

I just posted this post on my other blog....  thought it would be good to share here too....  

“Cultivate the habit of being grateful
for every good thing that comes to you,
and to give thanks continuously.
And because all things have contributed to your advancement,
you should include all things in your gratitude.”

~ Ralph Waldo Emerson

This has been quite a challenging week.

Tuesday, in a moment of complete and utter “giving-up-ness”, I asked in a couple of my online lyme support groups….  how do you all cope with both the physical and emotional aspects of treatment?

I got a great many answers, but what popped up the most was this…  finding something to be grateful for every single day, and thinking of even the most laziest of days as a brilliant accomplishment. 

Hmmm….  that would mean that Monday and Tuesday of this week were absolute genius. (smirk).

I’ll be honest here. On some days, I find it really hard to see the blessings. If I’m stuck on the couch, in a lot of pain, feeling nauseous, well, it’s really hard to see the bigger picture that reminds me that I’m in this to heal, not to torture myself. It’s difficult to remember that sometimes things get worse before they get better, and it’s even harder to remember that tucked inside the muck are little golden nuggets that without this illness I may not have even noticed.

I get resistant to that particular idea sometimes though, because I fear that it somehow gives the disease power…  that if I’m thankful for it even in the most subtle of ways, then that’s like inviting it to stay. And goodness knows, I don’t want that.

“Piglet noticed that even though he had a Very Small Heart,
it could hold a rather large amount of Gratitude.” 

~ A.A. Milne, Winnie-the-Pooh

But I, of all people, should know better than that. I’ve been keeping a gratitude journal and touting its benefits in my circles for years now, but not in a law-of-attraction-y kind of way… more in a the-only-way-to-thrive-is-to-stay-grounded-in-goodness kind of way.  It’s been a practice that has kept me sane and clear-hearted for a long time now.

Except guess what?  I can’t remember when my last entry was. I let it slip, partially because I had victimized myself into believing that with the exception of a few good days when I’m able to paint and walk around the lake and do stuff like that, I have to constantly be engaged in an enormous, crazy, raw, horrendous battle of sorts….  and sometimes I just feel too exhausted to fight.  Sometimes it feels as though I am grasping at straws. Or that I am sugar-coating things.

“Let gratitude be the pillow upon which you kneel
to say your nightly prayer.
And let faith be the bridge you build
to overcome evil and welcome good.” 

~ Maya Angelou, Celebrations: Rituals of Peace and Prayer

So for a while now, I haven’t written down my gratitudes. I think of them some nights before falling asleep, but thinking about them isn’t as sustainable as writing them down. And so…  it’s become a little like flossing teeth. Only when you remember to do it do you recognize just how helpful it is.

My friend Whitney and I started to share gratitudes online through Facebook messages for a while, thinking that the accountability would do us some good, but that too has unfortunately taken a back seat to the daily challenges we are both facing.

So I realized after reading those responses from the lyme folks that I need a bit of a gratitude makeover. I need to give myself permission to pluck the blessings out of the mess, and thereby in some weird way, be grateful for the mess itself….  because afterall, there’s no getting around the fact that it’ll be with me for a while, and that putting so much energy into resisting it only takes away from the energy to heal.

“[Gratitude] turns what we have into enough, and more.
It turns denial into acceptance,
chaos into order, confusion into clarity…
it makes sense of our past, brings peace for today,
and creates a vision for tomorrow.”

~ Melody Beattie

There are blessings in disguise in almost anything.

Tragedy and adversity, challenges and troubles– they happen every single day. They go along with being living beings. We’ve all had our hearts broken. We’ve all experienced unimaginable loss in one way or another. We’ve all felt like we’ve fallen flat on our faces without any hope of getting up again.

I’m not suggesting that finding the good in that is easy. As I said before, it seems rather counterintuitive to be grateful for the terrible, horrible, no good, very bad things that happen. And honestly, I really don’t think it does any good to slap a smiley face on grief, pain, or suffering. I’ve always been apprehensive about pushing affirmations for that very reason, unless someone is really ready to do the work and dig deep.  

Digging deep means allowing ourselves to feel. it. all.  It means weeping until there are no more tears left, screaming at the top our lungs, kicking and pounding on the floor like a three-year old if we have to, and even having an occasional woe-is-me-pity-party. 

No, it’s not “fun.” But it’s necessary in order to discover the treasures entangled within the mess. The alternative is calling it a day and succumbing to a life of misery. And I, for one, don’t choose to do that.

And so I’m hereby re-committing to living and expressing gratitude… to being mindful of the unexpected gifts that this illness has brought me–  

More intimate relationships and clarity around knowing who in my life is reallythere and who isn’t…
A more profound connection with my family…
The opportunity to practice asking for and receiving help…
Quiet days sprawled out on the couch with nothing to entertain me but my own thoughts…
The recliner in our living room (how did I not appreciate it before?)…
Early morning yoga…
Lemon water…
The necessity to listen to and honor my body in ways I never have…
More creative ideas than I could possibly keep up with…
A reason to be more persnickety about what and who is nourishing to me, and what and who is not…
Noah’s foot rubs and Zoe’s head massages…
Getting more comfortable with giving up control and surrendering…
A keener awareness and cultivation of my own intuitive, wild nature…
The recognition that I am that much stronger due to these circumstances…
And so much more….

“When you change the way you look at things,
the things you look at change.”

~Wayne Dyer