The struggles of this week…

The migraine hit me on Tuesday night. I knew it was coming, I just hoped it wouldn’t be too bad. By Wednesday morning, after a sleepless night, that ship had sailed. All I could do was wait it out.

What does your migraine feel like? Mine is a mixed bag. I could be wrong, but I strongly believe that these headaches trigger a CRPS flare. The migraine pain is consistently centered over my left eye, radiating through my head and across my face. But then the burn starts. It’s like having a sunburn under my scalp, along the hairline.

On top of that, my body feels weighed down by invisible sandbags, as though I’m being squashed by an imaginary car-crusher. It’s exhausting. Sometimes, I just have to close my eyes and sit as still as possible.
What does your migraine feel like?
As I muddled through Wednesday and then coped with the migraine hangover on Thursday, I was reminded of something. Although it was a bad day – a bad couple of days – and it’s tempting to proclaim it the worst possible day…. It really wasn’t.

A friend posted a poem written by Chanie Gorkin entitled, “Worst Day Ever?” And it helped me get over my feelings on the day. I’m including it below.

Published in “Beyond the sea: Odyssey,” 2014/2015

As hard as my bad days can truly be, as heavy as my rock backpacks become, I am surprised to find tiny flickers of light and goodness among the gray. Small snapshots of beauty and joy. Things that help me cope in ways I never expect.

Perfect example: Tuesday was laundry day. My daughter and I were between wash/dry cycles and we took our usual stroll. Most of the summer flowers that we’ve enjoyed seeing are long gone, replaced instead by lush green plants and trees preparing for fall. But as we passed one building that has an extensive garden out front, I happened to spot two perfect flowers. They were the only ones left on that plant. I wish now that I had taken a picture, but wanted to stay in the moment. Deep fuchsia and bright orangey-red. They sort of resembled Gerber daisies, though I’m fairly certain they weren’t. But, in that pained moment, they helped me tremendously. My brain stopped focusing on my tiredness, on the coming headache. Even now, days later, I’m smiling.

All of us battle these bad days. Whether it’s work related, family issues, health or lack of….. it helps to find an anchor. Something to help you breathe through the next moments, days, weeks, and beyond. Something that reminds you that there is good, even if it’s next to impossible to see it. What do you do to cope? What is your anchor?

I knew that headache was barreling through my head, I was exhausted, trying to manage the things I had to do – those flowers gave me a reprieve. Something so simple and small. But very powerful.

And, to be totally honest, admitting to myself that I simply had to stop and exist in the space I was in – headache and all – was a way to cope. Nothing was getting done, I couldn’t finish the things I’d needed to do. In the end, so what? The world didn’t stop turning. The sun rose and set that day. Planes flew overhead toward the various airports in the area. Kids walked by with their parents. Cars honked. Birds flew. And I sat, nursing my aching head. And it was okay. I was okay.

What do you do to cope? Even if the answer is nothing exciting. I sit and exist in my pain. I exist in my stress. I exist and that’s about all I’ve got at the moment.

And that’s okay.

It wasn’t my most productive day. It was a hard day. But not the worst day. There have been worse, I’m sure there will be in the future. But I got through it.

We find a way.

May this week bring you ways to cope, ways to thrive, and ways through the hard stuff.

Peace and painlessness,

Beck ❤️


#thisiswhatsicklookslike #rsd #crps #arachnoiditis #autoimmune #migraine #sacroiliacjoint #facetjoint #backpain #medicalmarijuana #carpaltunnelsyndrome #cubitaltunnelsyndrome #patientadvocacy #painintheBECK #phantosmia #dextroscoliosis #thoracickyphosis #lumbarlordosis #headache

Empowerful….

Last Tuesday, an eagerly anticipated package arrived at my apartment. The contents? Earrings, a surprise necklace, and a lovely note from the merchant.

I was excited about this delivery because one pair of the earrings represented something waaay bigger than a simple style choice. The earrings, (pictured below), represented power, at least to me: a spine and sacrum. The physical manifestation of me taking something back from my spine – something I hadn’t given freely.

As I scrolled through the website, I came to the spine/sacrum pair and busted out laughing. How PERFECT! Struck by mental fireworks of fabulousness, I knew I needed to get them. I also ordered a button pair and another with antique sewing machines. (Pictured below). I mean, come ON. How awesome are they??

The surprise necklace!

It all begin back in the early weeks of summer. My gal had ordered some fun earrings from an Etsy shop she’d discovered: CottageCoreCA, located in Canada. The shop has a wide selection of incredible designs that brought me back to youth. I’d find all kinds of cheap earrings to add to my collection: monkeys, skulls, motorcycles, birds. It was a fun and inexpensive habit fed by babysitting and smaller jobs in the neighborhood. Seeing the selections at CottageCoreCA made me really happy. And reawakened a simple joy I’d long forgotten.

The spine pair spoke to me, sending an empowerful message to my brain and heart. One that said that this was a way to reclaim and reframe at least part of my medical narrative. This might seem ridiculous to some, nonsensical even. But not to me.

As we face the hardships in our lives, it’s important to find ways of reclaiming our space and our power. However we can. This isn’t an easy task. It doesn’t have to be a physical thing. It can be the words to a song. A book. A poem. Photographs. Even chatting with a particular person! Whatever helps us to ground ourselves.

I’ve been fortunate to find these symbols every once in a while. One of my earliest was a tiny spoon pin, representing the spoon theory. It’s meant to be a reminder of the amount of spoons of energy/strength we have each day. How many spoons do I have today? How many have I used? A reminder to listen to our bodies.

Another is the beautiful wooden spoon created by Mary, my friend and fellow CRPS warrior. She’s a true maker, a creator who used spoons to create for me. I keep it on my sewing table to remind me to know myself but also to keep on making!

This pair of earrings has done a few things for me. They’ve reminded me to keep my sense of humor. I genuinely laughed when i saw them. They’ve taken me back to a simpler time, one when I could wear whatever jewelry I wanted for fun. Why can’t I do that now??? And, lastly, they’ve enabled me to wrest a tiny bit of control back.

Whatever you’re facing…. whatever hardships you’ve got to carry in your rock backpack, I highly recommend seeking a means to empower yourselves. It’s sometimes easier said than done. But trying to find empowerful things in our lives makes life simpler, makes the backpack a little lighter. I found this one by accident, but it makes me smile. That’s a gift that keeps on giving.

My spine is a mess. I can’t un-curve it. I can’t un-arachnoiditis myself. But I can find humor in those irreverent earrings. I can enjoy seeing the bewildered expressions on people’s faces. 😂

The earrings have empowered me. Something so simple! A joy unlike anything else, all in a tiny pair of earrings! But I can carry it with me. After I filmed yesterday’s video, I had to wait until my back unlocked.

It’s been a while since I had one of those episodes. The truth was that I sat, waiting for my stupid bones to unlock and stop hurting while wearing tiny replicas of those bones. It cracked me up, in spite of the pain.

There will never be a time when those earring don’t make me smile. It’s a forever given. I’m full of gratitude for that. Anything that takes me out of raging about my back being a jammed up mess is welcome. Very welcome!

Please check out the shop and, if you make a purchase, please let the owner know I sent you. I’m including a link here:

etsy.ca/shop/cottagecoreca

Here’s to empowerful moments and symbols. Here’s to finding unexpected joy. Here’s to the moments when our backpacks get lighter. And here’s to each of you.

Peace and painlessness,

Beck ❤️


#thisiswhatsicklookslike #rsd #crps #arachnoiditis #autoimmune #migraine #sacroiliacjoint #facetjoint #backpain #medicalmarijuana #carpaltunnelsyndrome #cubitaltunnelsyndrome #patientadvocacy #painintheBECK #phantosmia #dextroscoliosis #thoracickyphosis #lumbarlordosis #empowerful

Empowerful…..

#thisiswhatsicklookslike #rsd #crps #arachnoiditis #autoimmune #migraine #sacroiliacjoint #facetjoint #backpain #medicalmarijuana #carpaltunnelsyndrome #cubitaltunnelsyndrome #patientadvocacy #painintheBECK #phantosmia #dextroscoliosis #thoracickyphosis #lumbarlordosis

Dear friends….

I had a few things I wanted to chat about today. A migraine that started last Friday and stayed until Monday – with the migraine hangover lasting until early Wednesday. And the first – and maybe the worst – UTI that I’ve had in years, coinciding entirely with the migraine. It was a rough weekend, to say the least.

Then the U.S. had another week of scary weather. Local flooding, power outages, tornado warnings and touch downs (in NY and NJ, for crying out loud!). A few other things that hit close to home and I felt humbled by all of it. Humbled and very small in the grand scheme of things. There’s so much happening in the world – as there always is. It feels like we’ve only just gone through one thing only to have another follow. And all of this as the pandemic rages on. But tonight, I just needed to think about the blog in a different way.

So, for this week, I’m just going to refocus and send out lots of good wishes for each of you. For everyone – whether you’re ten minutes away or thousands of miles, I hope you’re okay. I hope the same for your loved ones. I hope you’re safe and well and cared for.

Wishing you a safe, peaceful Labor Day weekend. Take care of yourselves and each other.

Peace and painlessness,

Beck ❤️

#thisiswhatsicklookslike #rsd #crps #arachnoiditis #autoimmune #migraine #sacroiliacjoint #facetjoint #backpain #medicalmarijuana #carpaltunnelsyndrome #cubitaltunnelsyndrome #patientadvocacy #painintheBECK #phantosmia #dextroscoliosis #thoracickyphosis #lumbarlordosis

And the MYgraines continue…

On Friday evening, I knew. I felt it coming on, but figured it might not be a bad one. The last few months hadn’t been, with regards to migraines.

Note to self: never, ever assume anything simply because “the last few months hadn’t been.” I know better than that. 🤦🏻‍♀️

No time to……

Last Friday, I had my thoracic epidural injection. The morning started out a bit chaotic, to put it mildly.

Waking up with twenty minutes to spare before I had to leave for Manhattan, I was flying on adrenaline. If not for my family’s complete calm, I’d have fallen apart for sure.

As I raced up the street towards the subway, I imagined arriving too late to get anything done. But, once inside the station, I made my train and was on my way. Unfortunately, as per usual when you need to get somewhere fast, we were forced to pause for longer periods at multiple stops. “We’re being held in the station. We’ll be moving shortly.” Not “shortly” enough, was all I kept thinking. But then, with 12 stops still to go, the delays ceased and we were back on schedule.

I was so focused on the typical NYC MTA issues that I wasn’t focused on where I was going or why. That, in and of itself, was a miracle.

I had no time to worry about the procedure. No time to dwell. No time to freak out, (about that, at least). I simply had no time to do anything but get myself to the office as calmly and safely as I could. I had to chill out since I had no control over how fast the train would (or would not) be going.

And that – without question – was the very best thing that could have happened.

Whenever I’ve had to get tests done, have surgeries or other procedures, or even have basic exams, I panic. We know this. That is a long established pattern of behavior for me. This time? That pattern was shattered thanks to a missed alarm.

Racing down the city streets to the office, I forced myself to take deep breaths and listened to my music. Fleetwood Mac carried me to my destination. All of my usual “pre-game rituals” were off the table and I hadn’t even realized it. That’s the funniest thing about all of this.

Once I finally checked in, with five minutes to spare, I sat in the waiting room and took stock of myself. I had my wallet, ID, phone…. but I was missing something. What the heck was it?

Oh! I know! I was missing the massive boulder of abject terror that usually accompanies me to the office on procedure days. There was no time to pack it in my backpack. No time to stick it in a pocket of my brain. That’s not to say I wasn’t a little bit worried, of course I was. But I wasn’t incapacitated by it. I wasn’t spinning. I wasn’t having a panic attack. I was just…. sitting.

Then I was called in. A friendly nurse took my vitals. My doctor came over to my chair and chatted about who would be in the room with us, it was a bit of a crowd. A crowd I dubbed “the epidural party.” Then he brought me in, got me set up, did the procedure, brought me back to recovery, and wished me a good weekend. Needless to say, I was a little thrown. It was all very laid back and fine.

The procedure details aside, I couldn’t get over how it all played out. It did take them time to get to T11-12. Whenever I asked for an update, my doctor said, “everything’s fine. We’re just going very slowly and carefully.” If it had been any other doctor, I wouldn’t have believed him. I’d have been sure something was wrong & demanded more details. But, somewhere between the setup and wrap up, I gave the whole thing (or at least most of it) over to the universe and my doc. What could I have done anyway? Someone’s directing a small catheter into your spine, you’re not going to jump off the table and freak out.

Of course we need to plan when we have to have medical procedures done. We need to be prepared for the best and worst case scenarios. We need to have all of the details to feel secure. Or maybe you think differently. Maybe the less you know, the better. Everyone’s got their own ways of coping. I just know that I’m a visual person. I have a need to know what’s going on or I can’t get settled. Maybe that makes me a pain in the a$$, but it’s the way I am and I can’t change it. It’s too ingrained in me. And it’s my only means of control in these moments.

In this case, however, missing that alarm did me a huge favor. When I was headed back home, I missed the train. I got to the platform as it was pulling away. It would have been easy to give in to my tiredness and frustration. But I didn’t. Right then, I decided that I wasn’t meant to be on that train and needed to accept that things were playing out as they should. So that’s what I did.

Last Friday, having “no time” made it the best time. ☺️

Wishing each of you a safe and happy weekend.

Peace and painlessness,

Beck❤️

#thisiswhatsicklookslike #rsd #crps #arachnoiditis #autoimmune #migraine #sacroiliacjoint #facetjoint #backpain #medicalmarijuana #carpaltunnelsyndrome #cubitaltunnelsyndrome #patientadvocacy #painintheBECK #phantosmia #dextroscoliosis #thoracickyphosis #lumbarlordosis

No time to……

#thisiswhatsicklookslike #rsd #crps #arachnoiditis #autoimmune #migraine #sacroiliacjoint #facetjoint #backpain #medicalmarijuana #carpaltunnelsyndrome #cubitaltunnelsyndrome #patientadvocacy #painintheBECK #phantosmia #dextroscoliosis #thoracickyphosis #lumbarlordosis