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

onto round two!

Now that we know which antibiotic was giving me tummy trouble a few weeks back and have replaced it with something that seems to be much easier on me, we've decided to begin this next 3-week round with a bang and up the ante a bit this week with treatment. We're doubling up on the Ceftin and I will now be taking the Septra twice a day versus just once on our Monday, Wednesday, Friday treatment schedule.

I'll be honest. It was a rough morning. I was quick to herx, which is evidently pretty normal at this stage of the game when adding in more stuff. An hour or so after I ate and took my meds, the nausea kicked in. I somehow escaped getting sick, after sitting on the floor next to the toilet for a little while....  I sensed into my body and decided that I needed some protein, so I got some turkey bacon in the oven, and Noah made me a hardboiled egg. And with that, the nausea passed, with only a few smaller and much milder episodes since.

Noah and I spent much of the morning snuggled up together on the couch. I was a little out of it-- otherwise, I may not have let him watch "Naked Gun." Tee hee. Remember that movie? Oh my. While hugely inappropriate for an almost 12-year-old on soooo many levels, atleast we both got to giggle some. And giggles are always, ALWAYS healing.

My biggest complaint is the pain in my legs. Mostly in my left leg today...  it's an intense, dull ache that worsens when standing still or sitting. So this is going to be another one of those really short blogposts so that I can go and be horizontal again. Which sucks. Because I feel like I have a lot to say today. There's a lot going on in my noggin. I want to write desperately.  And there's also a fresh new piece of paper up on my easel, ready for me to dive in and add some color....  maybe tomorrow...

Round 2 of the "induction" phase:
 
Monday, Wednesday, & Friday:  Minocin (100mg), Ceftin (1000mg), & Septra-- [all 2x a day]
Thursday & Friday:  Flagyl (500mg 2x a day)

celebrate

It's truly hard to believe that's me in that picture...  three years ago today. I had just completed the Iron Girl Triathlon, after a heck of a lot of hard work and a newfound faith in my body.  1/3 of a mile swim, followed by a 19 mile bike ride, followed by a 3 mile walk/run. And I didn't come in anywhere near last, not that it would have mattered.  I knew in that moment what a big deal it was to cross that finish line, after I had nearly talked myself out of it several times, thinking I was way in over my head.

I can only think that the moxie that I embraced that day is serving me now, as I face an even bigger uphill battle with Lyme treatment. I can only believe that none of that was a waste of time or energy or joy...  that the experience gave me what it takes to overcome just about anything.

This morning, I sat attached to an IV receiving a Myers drip, and couldn't help but wonder what other adventures I'll embark on in this life... what more this body is/will be capable of. On these weeks off of antibiotics, it's easy to dream BIG. It's easy to overdo it on the exercise, to slip even for just a moment into that triathlete mentality that encourages me to push a little further.  It's easy to plan all sorts of things I'd be better off not planning just yet. Big hikes, big workshops and retreats, big adventures...  things I clearly don't have the energy for these days, but I hope to... one day.

And so today, juxtaposed between what once was and what will be, I celebrate and marvel at the possibilities.

holy herxing, batman!

Okay, so remember when I was talking about herxing a couple of posts ago?

Turns out that was nothing. Or perhaps it was something, but relatively speaking, well....  let's just say I had no earthly idea of what I was talking about!

This week, we switched out the azithromycin for bactrim instead....  and while my tummy is as happy as can be (evidently the azithromycin was the cause of all those nasty digestive issues), wow, my body is responding in every other way possible.

I made it home with the kids yesterday afternoon just in time...  shortly after we settled in for the evening, I started to not feel quite right in the head. My folks called to wish me a happy birthday, and I had a difficult time talking to them, as though I kept stumbling over and losing words. I felt like my brain was over-stimulated...  couldn't listen to music, had to keep the kids quiet. Noah made supper-- grilled cheese sandwiches is his specialty. I developed a low-grade fever. I took a detox bath, but it didn't seem to help a whole lot. By the time I went to bed, my elbows and knees were hurting. So much that it was hard to walk or lift anything without support.

I didn't sleep very well. I was okay if I were to lie perfectly still... but if I moved at all, my head pounded. Got up a couple of times to pee during the night and felt like I was drunk. At 4am, I took some advil...  and was finally able to fall back asleep around 5. I had a dream about being kicked by a herd of camels. When I woke up at 6am, my head no longer hurt, and the dizzy drunk feeling had gotten a bit better. My elbows and knees were a bit better too.... but my legs ache...  this deep, dull, heavy ache that makes it hard to stand in place for more than a few seconds. I'd rather be walking or sitting or lying down.

I've been assured that this is all normal. I'm taking herbs and alkaseltzer gold to detox, and I imagine today, I'll be in the bathtub more than once. Which reminds me...  I need to order more epsom salts. It's looking very likely that I'll be taking next week off of my antibiotics, and am looking forward to feeling more like myself. That will complete our first official, wacky and imperfect round of antibiotics!

I knew this would be hard. But damn. I realized this morning that I need help. I'm looking for help in getting the kids home from school today and tomorrow, because honestly, I'm not sure I can drive. Actually no. I know I am unable to drive. Gosh, for a control freak like me, that's really hard to say out loud. I have put out a few emails/texts to those I know I can ask.

And I imagine that the kiddos will be making dinner again tonight. Noah wants to do it all. He's having a difficult time with all of this. After I lost an online friend a couple of days ago (she was a healthy and vibrant 43 year old who simply collapsed and died), I think he's afraid of that happening to me, as much as I reassure him that it's all normal.  He was trying to fake not feeling well today so that he could stay home with me. Precious little man.

I'm also being reminded that stress is my worst enemy right now. Yesterday was difficult, stress-wise. I need to back off of anything that adds to the load right now. I fear that to some, this might seem heartless or insensitive, but my body is clearly at its limits right now. And so I shall continue to keep my heart in the right place, and hope for understanding, love, and peace.

Okay, I can't sit here anymore. So I'm headed off to attempt to do a little bit of yoga before making a cozy nest on the couch, trusting that I'll be able to get myself up off the floor again afterwards! And I hope to paint some today. Above is a painting I started yesterday, on my birthday, to honor both the coming year, and to honor my friend, Kim, who left this world way too soon....

the life that is waiting for me

This week, it's my birthday.  I'll be turning 45. I never even imagined that the week I turned 45, I'd also be leaping into my second week of antibiotic treatment for chronic Lyme disease. I think that's often the most difficult part of this...  feeling the gap between where I am in this moment, and where I imagined I would be.

I imagined that this year, I would be fully engaged in my fifth year of the Wild Woman Inner Circle. I imagined that my book would be finished, and I'd be hunting for publishers. I imagined that my business would be growing and thriving. I imagined that I'd be running 5ks with the family, and scoping out a through-hike on the Mountain to Sea trail. I imagined that I'd be getting ready to apply to the Institute for Integrative Nutrition to add "wellness coach" to my offerings.

And yet, my life now is very, very different.

Before my diagnosis, when it was suspected that I had mitochondrial disease, I went through the appropriate cycles of grief that goes along with learning that I might not ever get better, that I might eventually find myself in a wheelchair or worse.  So really, my Lyme diagnosis was truly a reason to celebrate...  because while it's still uncertain as to whether it's possible to completely do away with it, it is certain that some people can go into remission and be well enough to live somewhat normal lives.

But I'm finding as I approach my 45th birthday, that I am discovering yet another layer of grief. the woulda-coulda-shoulda kind of grief.

I try every day to sort the gifts from the grit of this whole experience...  to be grateful for the help and support I'm getting that are making it possible for me to heal, and for the insights and wisdom and strength that this journey is imprinting on me.  Lately, I've come back to the practice of sitting in front of my altar each morning after a few stretchy yoga poses, cleansing my body with the sweet scent of sage, and looking into the center of myself in stillness, knowing on some level that it will all be okay.

And yet, there are moments when I cave into the grief. Just like we all do, I suppose.  And even then, I try to just be present with it... because it feels as though if I try to fight it or deny it, it simply gives it more power over me.

I know very well how the mind can carve out the path long before the body does. About four years ago, when I started to see a nutritionist, and eventually began training for a triathlon, I realized just how much the "challenge" part is dictated by my thoughts, my fears, my insecurities...  and I proved to myself that if I were to just override those things and believe in my own moxie, I could conquer just about anything.  Before that, I had no idea what I was capable of.

But part of the grief now comes from the recognition that no matter how positive I aim to be, or no matter how deeply I commit to my own healing, there's still uncertainty...  discomfort...  pain... angst... physical limitation.  It comes from knowing that I can fight the monsters in my head with all of the strength and brain power that I have within me, and at the end of the day, there's still a good chance that I'll be exhausted, that my muscles will be cramping, and that I'll not be able to run a 5K with my family or have enough energy to hold space for a circle. These things will hopefully come in time, but they are not part of my present reality.

So this week, as I get ready to turn 45, and as I begin my second week of treatment, I am determined to be present with it all... and to not criticize myself for not being able to "pull myself out of this", and accept that this is simply a single leg of my journey...

... to surrender to whatever life I have waiting for me.

Week 2 Treatment:
Minocin 100mg 2x day, Monday, Wednesday, & Friday
Ceftin 500 mg 2x day, Monday, Wednesday, & Friday
Azithromycin 500 mg 2x day, Wednesday & Friday (depending on how I'm tolerating the other two)
Flagyl 500 mg 2x day, Thursday & Friday

(with detox baths and herbs for herxing)

patience

"Rivers know this:  there is no hurry. We shall get there some day." 

~A.A. Milne

Well, there's been slight change of plans this week. Because my belly had such a hard time last week, Anne thought it best to take this week off of antibiotics and allow myself to recover.  This was difficult for me to take at first. This start-stop-start-stop process is making me crazy! While I know she's right and trust her judgement completely, I get to feeling so very impatient...  especially when I've been feeling things happening in my body so much more strongly. The impulse is to keep going and get rid of the little boogers.

I now know what herxing is like, that's for sure. Toward the latter part of the week, I felt it... but it really settled in over the weekend, took over my muscles, my bones, my energy, my emotions. Yesterday I was a veritable roller coaster.... up one minute, down the next. Long periods of nausea that reminded me of morning sickness....  a very stiff and crackly neck...  zapped energy....  intense muscle cramps and soreness. My family and I tried for a slow walk around the lake, and I found myself stopping and resting at each bench, frustrated and feeling defeated. But then again, if I hadn't stopped, I probably would have missed the proud Mama and Papa geese and their seven fuzzy babies...  and I no doubt would have missed the baby chickadee exploring the branches of a giant maple tree above where we sat at one point.

I have some herb tinctures that help with the herxing tremendously, especially with headaches and flu-y kinds of symptoms. Thank goodness for them. I took them several times yesterday.

Today was much better. I even managed a mile and half walk around the lake (3 times around!). This afternoon, however, my energy crashed and my muscles have had some more pretty intense cramping. Anne wants me to go ahead and get another magnesium IV-- hopefully that will help.

I did manage to finish the painting above today. I had started it months ago...  so it feels like an accomplishment to have completed it after all this time. Again, I am learning patience... to move more slowly and trust that eventually I will do what my heart sets out to do.  My hands are completely done in though, and typing is rather difficult at the moment. So that's it for today.

Onward.

awareness

I hereby declare that today begins a new chapter.... 

Today ends my first week of treatment. 

I didn't die. I didn't fall apart 

(well, maybe a little, but I was able to put myself back together again). 

Yes, it was hard. 

But I pushed through. 

  

This week, I've realized just how much I need to allow myself to embrace this experience, 

become pro-active and curious and bold within it, 

knowing that every day will be different 

and that I can find meaning and something to be grateful for...

 even when the journey is difficult and challenging and disheartening.  

I resist it though. 

I don't want it to take over everything.

I don't want to give it power. 

I don't want it to define me.

But as I was telling my son just yesterday,

we all get to decide what defines us. 

And illness, limitation, struggle, and pain clearly don't define who I am.

Yes, those things are part of the story, but they are just snapshots. 

Moments. 

The things that are constant

the things you can capture in every snapshot if you look hard enough,

the things that I would see if I were an eagle or an owl

soaring high above the horizon of life, 

the things that define me...

are

wildness,

creative mischief,

love,

forgiveness,

perseverance,

vision,

possibility,

radical trust,

commitment,

compassion... 

 I've realized that I must give a voice to

the fighter, 

the healer, 

the healed,

the activist,

 and yes, even sometimes the humbled victim 

in me...  

Not just by default,

but with intention, purpose, mindfulness, presence.

A few months ago, I had started a journal on a MealTrain site... 

I'm not sure how many folks read it,

but it helped me tremendously to write it. 

But it also felt, admittedly, a bit lonely and depressing.

I couldn't add pictures,

or make it a colorful, healing space for myself. 

I couldn't receive responses or share in any dialogue.

It was instead founded in my own need...  

for help with food and support.

And while there still may be a need down the road for those things, 

this space is not about that. 

This space is about the journey. 

Period. 

What I most want for myself and my own healing

is to feel like I can ramble on, 

eventually finding the meat in my own words,

while keeping those of you who are wondering or curious 

informed to the extent you wish to be informed.

May is Lyme Awareness Month...  

and I can't think of a better way to share awareness

than to share my story.

And so that is what I shall do,

bit by bit,

little by little,

until eventually I find myself hiking the Mountains to Sea Trail,

feeling so very strong and wild,

having reclaimed my body and having annihilated lyme. 

In the archives are some of the notes and journal entries that led me here. 

They are part of of the story as well. 

Feel free to peruse as you like.