Homecoming

It seems like ages since I last posted anything. It has been ages. This blog was started as a way to help me cope with what was at the time a medical mystery. So many questions. So much pain. So much fatigue. So much fear and uncertainty.

I can look back — and have been doing just that over the past couple of days — and see my turning point, but I stopped writing just as my life was taking a major turn. I’m making this homecoming visit to tell you about what’s been happening while I’ve been away.

Last time you heard from me, I had just finished moving to an apartment high in the treetops, which is where this blog got its name. (No, it wasn’t literally *in* the treetops — just on the top floor facing treetops, and it was tiny, making it feel like a bit of a nest or kids’ treehouse.) I also was in a relationship at the time. I knew for years it wasn’t a healthy relationship, but for various reasons I had stuck it out. As my condition continued to deteriorate, though, I found myself doing some serious soul searching. That was part of one of my last posts — my birthday week of yoga and meditation.

Sometimes things in life just align perfectly to bring you what you need to carry you through. It sucks that sometimes those things are really, really crappy. My things were really, really crappy. To stand in the midst of your own living hell, searching and searching for a light to walk toward, is one of the hardest things I’ve ever had to do, especially since I really wasn’t sure there was even a light out there to find.

You know how my health was deteriorating from previous posts. And I had exhausted most of the medical tests — overall, the counts finally came to 13 doctors, about 200 medical tests (including some repeats: 5x for Lupus and Hashimotos, 5x for Thyroid, 4x for Lyme), over 200 needle injections (over 90 within one month), 3 ER visits (2 by ambulance), and 2 misdiagnoses (including fibro — more on that soon). My relationship at the time hit an all time low. The job I was in was quite toxic, with the exception of being able to work at home a large part of the time — but even working at home did not create enough buffer from the nastiness and toxicity of the company and its management. Then there was the world around me, with heartbreaking news of school and theater shootings weighing heavily on an already burdened mind. Pile on top of that the very real prospect of never finding a true diagnosis; facing potential unemployment and welfare because the chronic pain and chronic fatigue had hit an all time, work-prohibitive high; mounting medical expenses from near-constant doctors appointments; being stuck, possibly permanently, in a tiny, dark apartment; and seeing all my dreams drifting away with no foreseeable way to fund them.

That’s the dismal view of where I was. But some of our greatest gifts come disguised in the most bizarre packages. All it takes is the willingness to look for the good.

I had written last about a pending week of meditation, yoga, swimming, and running — a birthday gift to myself to try and find myself again, or find the new me. Then I disappeared from this online community. There was good reason, and it definitely was a result of that week of self reflection and soul searching. It’s been too long ago now to accurately recount just how I came to my revelation, but I did have an awakening during that week. First, I came to an acceptance of everything that seemed out of my control — my health, my prospects, the rest of the world. Then I discovered what was still in my control. I could still choose to be happy with whatever I did have — the ability to wake up each morning with hope and gratitude for anything and everything that came my way, like birds singing, tree frogs, blue skies, light breezes, kind smiles, helpful neighbors, friends, food in the fridge, memories, and more and more I could find anew each day. I could still do my best in my little corner of the world to spread happiness, kindness, empathy, and hope. I may not change the whole world, and bad things were certain to continue to happen, but I could do my part to be a positive force in my corner of the world. It was the realization that I needed absolutely nothing but my own heart and will to be kind and grateful — I didn’t need a job, a nice home, a nice car, not even my health or mobility — with absolutely nothing, on the streets, penniless, terminally sick, I still had the choice every moment to be grateful and happy. And it sure seemed the world needed more of that, so at least I could make that mark in life. My life was not hopeless. It sure seemed better than the alternative.

Now this obviously had no effect on my health, at least not directly. It wasn’t a diagnosis or cure. It didn’t even point me in the right direction to a cure. But it did give me the most important tools for getting through everything — hope and happiness. And I let go of all the worry and angst that had been weighing me down further. Very soon after, I ended my relationship. Soon after that, found a better job. Things kept snowballing after that — a new car, purchased a condo, MVP award at work, meeting new friends, and eventually getting the strength again to keep pressing forward for answers to what was happening with my health, which had also benefited from my new outlook — I had discovered firsthand that happiness truly was good for my health. I checked off all the specialists I’d already seen, and made a list of those I hadn’t yet. I started with an appointment to a spine specialist, and that turned out to be the magic appointment. We started with an MRI of my cervical spine. The scans showed significant stenosis, an inflamed spinal cord that at several locations was pressed right against the now bare bone of the spinal column. Apparently what had happened in my Chicago Tri accident was the infection in my sinuses had traveled into my spine, inflaming the spine and eroding the lining. For the past 7 years (at the time of the diagnosis, now a year ago +), my spine had been more and more jeopardized, and for the several years prior to diagnosis by the spine specialist I’d had constant pressure on the nerves along the entire spine — the cause of all the chronic, widespread pain. It was why, when I stopped eating sugars — a prime food for infections — I had felt such relief, but also why, when I started running again, I ended up right back where I was, because the stenosis and nerve damage was still unaddressed.

I was nearly in tears when I finally heard my doctor give me, without question, an actual diagnosis that not only answered all the questions from the past several years, and not only explained all the symptoms, but provided a definable solution and course of correction.

Me heading to a swim at the pool just down the street from my new condo. I can walk there in 5 minutes.

Me heading to a swim at the pool just down the street from my new condo. I can walk there in 5 minutes.

Next came the start of my recovery. We scheduled an epidural to inject steroids into my spine and bring down the swelling. Next came 8 months with one physical therapist, then about 6 months PT on my own, and now I’m back with another physical therapist to continue my long recovery. I started running regularly again, even running 2 races, and making PRs in one — coming full circle to do a local triathlon.

Now it hasn’t been all wonderful. One of the reasons I came back to my blog is because I, as I write this, am experiencing a major set back. The pain the past several days is the worst I’d felt in a couple of years, making it impossible to run for the past week and difficult to sleep the past few days. But we had recently done a new scan of my lumbar spine (recall the first scans were just of the cervical spine), and there’s more work to be done on the lumbar region that we had yet to address. It looks like there’s significant disc damage between several vertebrae, and a couple of them appear to be collapsed entirely. I have an appointment to review the scans in a couple weeks, but am going to try to expedite that appointment. The past few days were pretty miserable, but there’s still lots of hope. And everything I’ve gained in my life the past couple of years (still hard to believe it’s been that long) has been a nearly miraculous gift. I’m still filled with gratitude, still find plenty of reason every day to be happy. With the help of my amazing doctor and support of my wonderful friends and loved ones, I’ll find a way past this hurdle, too.

lumbar_spine

Image of the lumbar spine, bottom vertebrae compression — the discs between the vertebrae should be white, not black.

Please pardon me if it takes me a while, but if those I’d connected with when I started my blog are still out there, I do want to eventually catch up and see how everyone is doing. You were an important part in helping me get through. Thank you, and truly namaste. It’s nice to return home.

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Baited Breath

I am pregnant with
a pause
that is lasting
too long.

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Broken Compass

Image“life is a maze, and love is a riddle, I don’t know where to go . . . .
I’m just a little girl lost in the moment”*

I seem to have lost my bearings somewhere along my journey. I haven’t figured out why yet.

There was a hiking trip where my friend and I found ourselves out on a rock ledge taking in the scenery of the valley below and the mountains surrounding us. I heard a buzzing sound, and first thought it was a bee or horse fly, until I noticed the rattlesnake coiled under the rock where my friend was standing. That little rattler tail was shaking its warning. I calmly got my friend’s attention and warned him, then tried directing him where to step to move away, until I saw another rattler under the other rock where he was about to step. I tried directing him to another route, but there was rattler #3. And #4. And then directly in my path were #s 5 and 6. By this time complete panic had set in, and we threw out all the wilderness guidelines and just made a run for it, and on my way out I caught in the corner of my eye #s 7 and 8.

In our frenzy to get away from danger, we lost our way and couldn’t find the trail, trail markings, any signs of familiarity for several minutes. Expletives starting flying as we tried to figure out “where the (bleep) is that (bleeping) trail?!!! I want to get the (bleep) out of here!!!”

I think that is where I have found myself lately. I’m still stuck in the woods trying to find my path again.

After all I dealt with last year — three ER trips, blood clots, pulmonary embolism, dozens-upon-dozens of needles, medications, dr appointments, moving, Takoda bitten, continuous flux and mayhem and growing pains at the office, several close-but-not-yet job interviews, and the fleeting hope that maybe we’d found a more treatable diagnosis than fibro, combined with all the little things —– too many snakes.

So I’ve been in a constant state of hesitation. It’s causing me to avoid promises I’ve made, second guess everything I do and think, slack on my communications, hide in my own little confused world. My primary goal this year is to try to figure it all out, clear the mind, find my path again.

The good news is I’ve been able to hone my resources to help me get back on my path. I finally made it back to the pool, testing the technique my allergist gave me of doing a sinus rinse after every swim. I’ve managed three swims so far with no sinus infections, no ear infections.

I don’t know if I can explain how amazingly good it was to get back to swimming. Especially this last time — water sports really do make a difference to someone with fibromyalgia. I was able to get a solid workout, feel the muscles pleasantly aching afterwards, and not feel the fibro-type of debilitating pains and exhaustion. I’m slowly working swimming back into my routine.

Then there has been my yoga. It’s starting to be such a big part of my life, I’m looking into saving up to get certified. Figure that will be a nice retirement career. I’m learning and practicing new routines, enhancing my skills and flexibility.

But not my focus.

Then there are the little things that are driving me nuts, like how many times I have mistyped just writing this (4 mistakes just in this sentence — make that 5). Even my fingers seem to need to be defibrillated. Stumbling across the keys.

For my birthday weekend in a couple of weeks, I’m taking a 4 day weekend and doing a stay-cation of yoga, swimming, meditation, running/walking, and a game night with friends — plus hoping a dinner or two with a friend and my boyfriend, but have yet to finalize plans, and don’t want to overdo the weekend. But outings with friends aside, the weekend is about finding myself again. Centering. Fixing the compass.

The advantage of a January birthday is it lands right at the time of all the new-year-new-you discounts. Two yoga centers have discount passes on unlimited visits for 7 days. 🙂  I plan to buy passes at both places and indulge myself in yoga for two slightly overlapping weeks (so I can put most of it during my birthday stay-cation). I’m planning on a schedule of 3-4 yoga classes a day, plus a walk/hike or swim each day for my birthday weekend. It will be a variety of yoga, so I’m not overdoing it — some will be more vigorous, while others are much more breath and relaxation focused. I’m very curious how the Bikram yoga will feel — I generally love heat, so I’m anticipating loving it. Hot tubs, sweltering hot summer days, hot stone massage — I’ve enjoyed them all. There’s even a special class — that weekend only — at one of the centers that’s specifically yoga for people with chronic pain conditions.

ImageI don’t know that I am going to come away from any of this with any solid ground breaking answers to life or anything like that. It may not even be anything I can put into words. All I know is I need to reconnect with myself.

I’m lost in the woods and not particularly enjoying it. I’m feeling disconnected, directionless, and a slight bit hopeless. But there’s still a ray of sun poking through the treetops, and I’m trying to stay focused on that.

“I’m just a little girl lost in the moment
I’m so scared but I don’t show it
I can’t figure it out
It’s bringing me down I know
I’ve got to let it go
And just enjoy the show”*

*Lyrics from “The Show” by Lenka

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365 Roses Smelled

Takoda_Gardenseveral years ago I started forcing myself to write down at least 3 good things from the day before heading to bed. some days were easier than others — some downright difficult, and I would resort to commenting on the color of paint in my room. as the years have gone on, I now find it difficult to stop at 3 a day, and usually find myself running out of space. at the end of the year, I like to pull out one item per day and compile my favorites — it’s my alternative to the dreaded christmas letter, which I refuse to impose on my friends. here is this year’s list — remember, there is always something worth getting out of bed to see and rewards in living to see another day.

reflections of clouds on Lake Anne – my nature photography framed on my walls – a letter from Aunt Judi – the morning moon – preparing for friends to come over – hot spiced cider –  Cuong walking Takoda for me – yoga by candlelight – getting a free parking space at metro – warm meusli on a cold morning – finding fruit juice sweetened dried cranberries – comfy and warm inside as it gets foggy and misty outside – walking Takoda to Lake Fairfax – houselights in the fog – raisins – friends remembering my birthday – Takoda resting his head on my leg – being home after a long day – whittling down the to-do list – purple and yellow flowers – old Chinese tea mugs from mom – clear night sky – saying hi to a neighbor – getting the trash out just in time – bird prints in the snow on the deck – lunch with Sharon – moonlight snowshoeing with Cuong – rainbow among the clouds – beautiful blue-sky sunny morning with birds singing – going to bed to the sound of rain – a star-filled sky – dinner, games, and birthdays with friends at Glory Days – being on time all day – a good stretch – a quiet day to catch up – lunch with friends at work – homemade ketchup – Takoda laying against me sleeping – birds at the feeder – NPR morning shows – an 8 mile run – warm enough to not need a hat – making banana bread – standing in a heavy snow under a street light and watching the flakes absorb me – morning songbirds on a snowy walk – playing with Takoda – waking with Reston Runners – not having to be anywhere – the house smelling wonderful from a day of baking – getting to bed on time – relaxing after work – watching favorite shows – sticking to my budget – a sleepy Takoda – guilting Takoda into taking his meds – peacefully still night – Cuong asking how Takoda was doing – coworkers asking how Takoda was doing – Takoda feeling better — super easy traffic – a clean house – a gathering of Robins in the front yard – resolving issues and being helpful at work – Takoda being safe and warm inside with me instead of still living on the street – afternoon nap on a snow day – Takoda barking at the snowman – calming silence – kids at the bus stop saying hi to Takoda – the surprise blessing of no internet for several hours – another beautiful day – warmer weather – getting approval for a project at work – daffodils in bloom – pink and purple clouds on a morning-blue sky – a good hair day – watching the Syracuse-Georgetown game – everything running on time – leg warmers – finishing 2 major projects on time – successfully juggling many tasks – taking a nap right after work – chatting with friends at work – sleeping in – Cuong joining me and Takoda for a walk to Lake Anne – finishing the Reston half marathon – watching Takoda dreaming – someone fixed my lantern for me out of the blue; don’t know who – the patterns on the sky of the bare tree tops – Syracuse beating Indiana – a quiet day to get stuff done – gardening – seeing the first spring toads – the first butterfly of spring – the sound of the water lapping the shore of Lake Anne – sun reflecting on the lake – chickens by the roadside – Forsythia in full bloom – Naked Pizza – checking in on my neighbor Polly – choosing the perfect day to take off work – biking to DC to see the Cherry Blossoms – bring-your-dog day with Reston Runners – first mommy-and-Takoda 5K race – sun-kissed face – the good in humanity at the Boston marathon – perfectly grilled zucchini – feeling competent – grilling on the deck – listening to the rain – seeing a Pilleated woodpecker just feet from me – nice neighbors – a thriving deck garden – Takoda guarding over me – shoulders to lean and cry on – a private room at the hospital – Cuong coming to visit me at the hospital – Kennedy (the 5 year old next door) making me a get well card – such wonderful neighbors – Sharon bringing me groceries and flowers – azalea’s blooming – friends checking in on me – a tiger swallowtail at the azalea – standing in the garden on a beautiful sunny day – flower buds on the tomatoes and broccoli – first goldfinch of the season – perfect lemon sherbert on my first try – peas with lemon and parsley – catching quick walkies with Takoda between rains – Takoda playing with his toys – afternoon thunderstorm – my broccoli actually looking like broccoli – evening frog chorus – Kennedy helping me weed the garden – being helpful at work – fresh herbs from the garden – getting a free book – a comfortable bed – peonies starting to bloom – fresh cut flower bouquet – several hours of quiet – watching the chipmunk on the deck – bright red cardinal on the garden stake – bluebird on a branch – frozen fruit pop soothing a sore throat – a heavy summer rainfall – walking Takoda to the bridge – hummingbird saying hello at the back door – getting a lot done – hiking with Takoda at Scott’s Run – chatting with Kennedy – old, soft t-shirt – discovering a new mountain biking trail – refreshing afternoon shower after a summer walk – blue jay on the tree – meeting new people at Reston Runners – fresh pineapple – reading the comics – a firefly walking up the patio door – getting some sun – a visit from a damselfly – listening to the rain and birds – strawberries from the farmer’s market – antipasta dinner – giving a jump to a nice couple in the garage – Cuong giving me a helping hand – frog chorus followed by songbird symphony – happening upon a huge pile of moving boxes up for grabs at the curb – walking around the garden atrium at the Gaylord – meeting new, interesting, friendly people – hanging out with friends playing games – a good laugh – dad enjoying his birthday tribute – getting a second wind – falling asleep on the sofa – a pair of bluebirds – chipmunks feeding on the tree seeds on the deck – long, early afternoon nap – the sun on my bare shoulders – the bus stop directly in front of my destination – sitting outside under a tree for lunch – changing into sweats after work – fresh fruit and a mango smoothie for a hot summer night – sweet juicy strawberries – frogs in the forest – soothing music – a musical piece titled “Becoming Takoda” – fireflies in the trees – walking to the hill to watch the fireworks – a baby praying mantis – a very light rain on my arms – barbecue at a friend’s – the smell of summer evening rain – silhouettes of trees on the evening sky – starting a blog – resolving issues at work – finally hearing the cicadas – the sound of rain – rosy glow of sunset on the deck – Takoda shadowing Cuong on the bridge – long afternoon nap – being able to work from home – candlelight on the wall – connecting with people around the globe – brief moments without pain – cicada shells hanging on trees – rescuing a praying mantis from a web – turning off the radio to listen to the frogs – fish tacos with mango salsa – successfully managing a day full of meetings – pain free moments – orange-sherbert clouds on a robin-blue sky behind green pine tree tops – peek-a-boo with Joseph – Kristen and Jim helping me move – Ann, Kurt, Joseph, Justin, Colleen, Cuong and Sharon helping me tirelessly with my move – a solid night’s sleep – swallowtail crossing the road – salamander on the deck – Leni and Charles bringing me dinner – easy-breezy at DMV (amazing!) – blue jay on the deck railing – warm shower after a long day – hearing an owl out back – an after work nap – a stocked refrigerator – finishing a project on time – brown rice pasta with bison marinara – clearing the boxes off the dining room table – Cuong joining me for the Reston Runner’s walk and keeping up with me and Charles – IKEA with Sharon – chatting with my new neighbor in the hallway – running in the pouring rain – fox calls out back – a group of kids on the bridge waving and shouting hello to the cars below – a soothing bedroom – getting a big hug from Kennedy after giving her my teddy bears – joining Cliff and Jim on the trail walk option with Reston Runners – white puffy clouds on the blue sky – all my laundry clean and put away – a grasshopper hopping from leaf to leaf – chatting with neighbors – getting chores done – open windows – games with friends – me time – the incredible volume of the frogs and crickets at night – new followers on my blog – lunch with the team at Mira Hibachi – walking the wooded trails with Takoda – afternoon trail run with Takoda – billy goats on the JFK trail – listening to NPR over pancakes and hot cocoa – finding a missing DVD – getting a spot in the local yoga class – downy woodpeckers on the deck – listening to good music – settling into my new place – volunteering the Reston triathlon – going to see Tig Notaro with Cuong and seeing Claire there – chatting with neighbors – finding a favorite CD that had been missing – quick soup and grilled cheese for dinner – a comfy chair – early autumn leaves floating on the stream – tasting fresh cider and grapes at the farmer’s market – exploring Reston trails with Cliff – morning rainstorm – my yoga teacher asking if I was a yoga teacher – considering getting certified as a yoga instructor – new puppies in the neighborhood – being serenaded by birds, frogs, cicadas, and crickets – Takoda recovering quickly from his snake bite – watching football – fresh sheets on the bed – writing poetry – friendly, helpful staff at Reston Hospital – many well wishers – having the strength to give myself shots in my belly – a relaxed, low-key evening – walking over to my old neighborhood to say hi and hearing that Polly is doing well – seeing 5 deer on the evening walk – listening to Thich Nhat Hanh – yoga class – Pandora music – Sharon calling to say hi and check on me – a bat flying overhead – making apple pie – listening to the water trickling over the rocks in the creek – little wrens visiting my deck and saying hi – my cookies being a hit at the potluck – successful meetings – giving Takoda a sneak rainfall bath – Anna’s cat Pogo – getting all my pictures hung – stove-popped popcorn with butter and salt – smiling – very nice kudos from a coworker – autumn colors – pine needles blanketing the paths – cool, crisp autumn morning walk with bubbling brooks, autumn colors, and leaves lining the trail edge – finishing my filing – just enough hot cocoa mix left for one more cup – laughing in yoga class – connecting with old friends – a beautiful sunset – a leaf-covered brook – playing with Takoda – all my to-dos done before the day is done – Takoda playing with his tennis ball – escaping traffic – having the windows open at bedtime – Takoda snoring – chatting with Claire during the Reston Runner’s walk – delicious lunch with Dad and Susan at Oyamel – yoga – voting – amazing sunset on the drive home – listening to the wind in the trees – Takoda waking himself up barking in his sleep – pumpkin pancakes – meeting one of my neighbors during a fire alarm – juicy ripe pear – dinner by candlelight – feeling beautiful – a warm home on a cool day – learning new technology – smell of a wood burning fireplace – stillness of Lake Anne – a meeting-free day – meeting new people – watching the sunrise – Takoda cuddling with Cuong – a relaxed day where everything falls in place – crewing JFK – post JFK brunch – Takoda and Daisy playing together – everyone doing what they were supposed to do at a 4-way stop – a very quiet work day – Reston Runners Turkey Trot with Cuong and Takoda – cooking Thanksgiving dinner with Sharon – Reston holiday parade – going to the Reston tree lighting with Cuong – a clean home to start the week – a comfy bed – a sense of belonging – quiet rustling of winter trees in a late evening breeze – staying in on a rainy day – deep afternoon nap – decorating for the holidays – stockings hung on my Cervelo – snow day – catching up with work friends at the holiday party – trying a new yoga routine – trail walk with Reston Runners in the morning snow – seeing the new Hobbit movie with Jim and Susan – cuddle time with Takoda – bison burger and sweet potato fries – the huge, bright moon – a friendly neighbor – getting the go-ahead to stop the warfarin – homemade chocolate chip cookies right from the oven – Solstice yoga by candlelight – the foot bridge at Lake Anne lit up in white Christmas lights – Christmas eve dinner with Cuong – Reston Runners Christmas day walk – Takoda looking for the pig in the tv – open source software – homemade pastries – swimming – pretty pink flowers – making eggplant lasagna – successfully creating a new cookie recipe

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The Calm After the Calm After the Storm & The Body That Cried Wolf

the calm after the calm . . .

The-Calm-After-the-Storm-rainbowI think it is misleading how the calm after the storm is depicted as a time of relief and sunshine and happiness — images of people frolicking in the new sunshine, walking along calm beaches, rainbows and birds singing. For the bad storms, it is a time of collapse and exhaustion. Recovery after the recovery.

It took three times as long as expected to thin my blood after the recent discovery of clots in my leg. The clots were the result of a hormone therapy I was on for endometriosis, which possibly was a complication of fibromyalgia (but more on that in a bit).

This meant three weeks of many, many needles: 2 IV needles for the ER visits (first for the clots, then for the pulmonary embolism); 9 needles for the blood labs on 9 different occasions; 2 hospital injected and 40 self injected needles in the stomach while we waited for the warfarin to finally kick in. 53 needles. In 3 weeks.

Okay, yes, I know I’m whining a bit here — there are some people for whom daily injections are a way of life. I should be jubilant that the injections are over. For the first couple of minutes after the doctor told me I could stop the injections, I was jubilant. Then it quickly moved to exhaustion, and all I could think was now I didn’t need to wait up late for my next shot, I could just go to bed. And that’s what I did. Fleeting glimpse of a rainbow.

It took all weekend to recover from what all the needles and uncertainty and waiting and lab and doctor appointments had put me through. The fibro pain in my hands and arms was sky rocketing. I’d had so many needles in my arms we’d had to keep switching veins, and the insets of my arms looked like bruised battlefields. My skin was so sensitive on my arms, they didn’t want anything touching them, not even my clothes or own fingers, which was complicated by the dropping temperatures and need for long sleeves.

Now I’m in the calm after the calm after the storm. The rainbows are long gone, it’s just another day. Those of us with repairs and recovery to tend to were too tired to keep our eyes open for them.

the body that cried wolf . . .

BoyWhoCriedWolf_smI have discovered through all this a danger of fibromyalgia. By adjusting my dial to being “used to everyday unexplained pain,” I also missed a very important pain indicator.

One of the things I think has been way overlooked in much of the medical field with fibro is that the body’s sensation of pain is an indicator that something is wrong. There is even a recognized medical condition called congenital analgesia that is considered highly dangerous because the person can’t feel — and thus can’t respond to — pain in their bodies. Yet patients with fibro are often told to just ignore the pain or mask it with medications.

Being someone who tends to push through pain and shies away from medications, I put meditation and mental strength to work to get through some of my worst pain. Part of what I did was try to convince myself the pain was “nothing but fibro” — just my body crying wolf again.

When my leg started hurting to such extremes that it actually crossed my mind that I might have a clot . . . I continued to ignore it. That’s what happens with things that cry wolf.

Had I not already had an appointment scheduled that week with my rheumatologist, I shudder to think of how long — dangerously long — I might have gone trying to convince myself the pain was nothing but fibro.

It’s pushed me to be even more in touch with my body and what it’s trying to tell me. One thing that is helping is some of the recent research that is coming out. I’d heard some rumors and then seen some links in others’ blogs to articles about research looking at arterial shunts in the hands. I’ve searched for and come across even more research where they’ve extended that to discover that in patients of these studies with fibro, the muscles and tissues are not properly absorbing the oxygen they need to repair and function properly.

This makes *so* much sense. Long before I came to the diagnosis of fibro I kept thinking it was something in my triathlon training — that I wasn’t allowing enough time to recover, or I’d pushed too hard, or I had lactic acid build up (which is a possible side effect of the muscles not getting enough oxygen). I altered my training routine so many times, and then just threw in the towel deciding to take a year off. When after a year off the symptoms still didn’t go away, I knew there was something more than my training at play.

But it felt just like I’d run a really hard race or trained really hard.

The good news is I am mentally trained from years of athletics and dance to know the difference between muscle fatigue and overuse, and something like a clot or serious injury. Now that I can segment my pain receptors into these two categories — “sports” and non-“sports” — I’m hoping I can retrain my brain to know when I need medical attention and when I don’t. To learn when my body truly means “Wolf!”

articles I’ve come across*:

http://www.cortjohnson.org/blog/2013/04/17/are-oxygen-starved-tissues-causing-pain-and-fatigue-in-fibromyalgia-and-chronic-fatigue-syndrome-mecfs/

http://www.bottomlinepublications.com/content/article/health-a-healing/key-to-fibromyalgia-pain-lies-in-the-skin-of-the-palms

* It is disappointing to see that this research has yet to make it’s way to the NIH or Mayo sites. I’d be very interested in hearing others’ thoughts on this research. As to the endometriosis, I’m also wondering if that wasn’t a result of the tissues/muscles not getting enough oxygen — muscle spasms escalate and build in the lack of oxygen. Without the fibro, it may be possible that I would have never had to start the hormone pills that caused the clots and PE.

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“Holy crap on a cracker!”

To borrow a favorite quote from The Big Bang Theory, that is the most appropriate response I can think of to this week.

Takoda was bitten by a copperhead snake. I got diagnosed with blood clots in my leg, which is caused by a medication that has been keeping my endometriosis at bay. The following day (today) I’m on the side of the road waiting for an ambulance to locate my car and rush me to the hospital with a pulmonary embolism from the clots in my leg.

Anyone have a rabbit’s foot, horseshoe, and four leaf clover to lend me? Holy crap on a cracker, could I use some better luck!

Now on top of the Rheumatologist, primary care, allergist, and GYN, I’m adding on an endocrinologist. Back to the drawing board on the endometriosis, so I need an appointment with the GYN again. In the past two days, I have been in the ER twice, and rushed in an ambulance — siren and all — one of those times.

Thank goodness for insurance. I can’t even begin to fathom how much all of this week would cost without it — estimating from the last time I was in the hospital (earlier this spring), I’m estimating this week racked up about $40k (holy crap on a cracker).

A little more than pocket change.

And not to mention sick leave, and still having a job despite suddenly disappearing today right around the time I was scheduled to be on a conference call.

Speaking of phones, mine is currently cooling and recharging after touching base with all the people wanting to know how I’m doing, whether I’m home from the hospital or being admitted (home – yay!).

So despite the seemingly bad-luck-week, there are still many things to be thankful for.

I’m feeling like this is an apt time to remember the old kids song:

I know an old lady who swallowed a spider,
It tickled and jiggled and wriggled inside her;
She swallowed the spider to catch the fly —
I don’t know why she swallowed the fly . . .

. . . and we don’t need to go to the next phrase — I’m rewriting it anyway.

I know a young lady who swallowed a pill,
It bothered and befuddled and clotted inside her;
She swallowed the pill to kill a pain;
She won’t be taking that one again.

I know just how serious clots can be. I’ve known people who had them, one of whom didn’t survive. So overall I am feeling very lucky. My rheumatologist caught the clots when at our appointment this week I complained of how extreme the pain was in my calf. He pointed out the swelling, and when I grabbed my ankles, the affected leg was significantly cooler to the touch than the other.

It’s still sinking in that had this not been caught when it was, it could have been a much graver outcome.

Ebb and flow. When the riptide starts to pull you under, sometimes the best defense is to not fight it. Roll with it, hold your breath, and look for the next opportunity to resurface and catch your breath again. And then don’t panic, or you’ll pull yourself under again.

Time to ride the waves for a little while. Stare up at the calm blue sky. Breathe in the air.

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Song of the Day

but tomorrow is a new day, so hear it, feel it, then let it go . . . .

http://www.metrolyrics.com/one-of-those-days-lyrics-joy-williams.html

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Savage Beast Afternoon

ImageWorked up
worked over
pent up
patience over
screaming inside
savage frustration
brings me back to savage nature
Bubbling
brewing
agony escaping
music catches me just in time
rage rolling
in beat to rythms
saving me from myself
sway
sing
rock
roll
no one watching
let it go
rock and thrash about
let it out
radio therapy
domesticating
raging pain

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Senseless Over-sensory Sensation

As a dancer and athlete, I grew accustomed to pain very quickly. I auditioned on torn ligaments. Climbed Mt. Washington with a torn rotator cup. Walked on a fractured ankle bone. Finished a triathlon after getting my nose smashed in the swim. Broke and rebroke a rib several times before finally breaking down and going to the doctor. Re-torn those torn ligaments 4 times. Helped an ER doctor put stitches in my own knee (okay, there may have been a bit of shock assisting me with that one).

I don’t typically scare away from pain.

Those pains, though, as intense as they were, at least made sense and I could expect them to stop after proper treatment.

This stinkin’ fibro pain is in terms of pain not much worse than pain I’ve felt before, and pushed through — except that IT NEVER STOPS! And I don’t have any working remedy or course of treatment.

I think it’s weighing on my mind much more than anything. Right now, my calf is screaming at me as if I’d torn the muscle. I have been about as inactive as possible the past few days, nursing Takoda back to health from his snake bite. There is no rhyme and reason that gives me the mental control to simply push through this.

It’s frankly driving me nuts and putting me in a foul mood.

Hoping putting that down here helps me to move on a bit. Lunch is almost over, and I need to somehow return to working.

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Sneak Attacks

Tonight instead of Takoda laying watch over me and my pain, I’m standing vigil over him and hoping for the best.

After I shut off the work laptop, we went on our customary afternoon walk/run. We hadn’t been through the park trails in a while, so I thought it would be nice to go along the trail that circles the lake. I stopped to admire the heron, ducks, and lily pads on the lake, and Takoda poked his nose at something on the other side of the log by us.

Suddenly he jumped back, and I caught sight of a coiled Copperhead right next to the trail. I dragged Takoda back, and hurried him out of the woods back to the safety of home.

My poor boy has a bite on his muzzle, and is now resting off the effects of the venom (not typically deadly to dogs, but I need to monitor him closely the next 24 hours). His lip and muzzle is swollen an inch over normal, and he is incredibly groggy. He clearly cannot get comfortable.

That was my first encounter with a Copperhead in the wild (I’d seen dozens of rattlers before).

I can only imagine the type of pain and discomfort he’s in. Role reversal is a good teacher if we make note to pay attention.

Tomorrow morning I will miss the trail run and potluck with my running group. I admit I am a bit bummed about that, but if there’s one thing I’ve learned the past few months it’s where the priorities are. Takoda is my priority, like I am his priority.

I had also hoped tonight to finally get to some of the blogging I meant to do last weekend. My mind just isn’t in it at the moment. Now that it looks like I’ll be house bound tomorrow, I should be able to get some done tomorrow.

Life — it sometimes jumps out of the bushes at you and takes you down for a bit. Quiet rest tonight — probably good for both of us.

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