And just when you think you got it right, you actually have it wrong…..

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

Strand-ed……

I have done a LOT of not so great things to my hair. Perms. Yes, you read that right: perms, plural, (it was the 1980’s! Leave me alone!🤣). Crimping iron (I have no excuse. I loved that thing and used it EVERY day). Hairspray. A lot of hairspray. No, seriously. A LOT of hairspray. Blond highlights (just once, but it was enough to convince me to NEVER do it again). At this point, I’m just glad that my hair isn’t completely damaged.

I was using a smoothing/straightening shampoo a while back but losing what seemed like a waaaay more than normal amount of hair every time I washed it. There could be a totally normal explanation, but let’s panic. It’s more dramatic and fun that way. 😂

I switched to one in the same brand family that claimed it would “lessen breakage and the amount of hair on your brush,” or something to that effect. Bottom line, I LOVED it and it didn’t irritate my skin. Unfortunately, I can’t use anything I want on my skin. I’ve needed to test various soaps, makeup items, and hair products to be sure they don’t irritate my skin and cause flares. I thought I’d found my perfect products.

Fast forward to me needing to buy new bottles of shampoo and conditioner because I have finally reached the end of my first round. It is NOWHERE. No one has it, it’s not in stock. All dedicated shelf spaces are empty. Why? What’s happening? I mean, besides me getting attached to something I’ll never be able to find again?!?

I go to the company website and there’s no mention of any recalls for it. But there is a mention of a lawsuit regarding that first shampoo I mentioned. Allegedly, ingredients in it have caused hair loss. W H A A A A T?!

I was reading the article out loud when my husband stopped me and asked, “wait, isn’t that the one you were using before this one?” W H A A A A T?!?! Yes! Yes, it was. Now, I have no idea if that was the reason I was literally pulling out what looked like a bunch of hair extensions every time I washed my hair. (Probably not that much, but it felt that way). Regardless, I’m glad I stopped using it.

I then went to the Walmart website and tried to see if I could order the one I’ve been using. Scrolled to the bottom and see a warning. Oh come on! For crying out loud!

Whyyyyyy???

But then I started to wonder, is this a thing?? Are you aware of toxic ingredients – like arsenic – in shampoo?? Trust me, I know that we are all full of toxic crap, that stuff is everywhere and in everything. But this caught me off guard.

Like when our gal pointed out that vegetable soup isn’t necessarily vegetarian. W H A A T?? But it’s vegetable soup! Well, the base is sometimes chicken stock. We have got to read labels. I’m glad she pointed that out to me because I wouldn’t have known. And when we do read them, I’m now checking for dyes and lots of unappetizing-sounding things. Stuff that sounds like it’s being made in a chemistry lab.

This experience made me open my eyes more to the products that I’m eating and using on a regular basis. And the whole thing is made worse by the inequity of it all. The better the ingredients, the pricier things are. The more “natural” the product, the more they can charge you for it. And that’s just wrong. Everyone should be able to access good, safe everything. And I know that’s not how it is, but it’s how it should be. That’s my soapbox for the day.

And all of this is made worse by my health issues. There’s the autoimmune component, which my rheumatologist made very clear back at the start of this journey. I was losing hair then, too. She felt it was due to the lupus. And my CRPS affects my skin and hair. I know I have a lot going on, so I don’t want to exacerbate the level of toxicity in my body. There’s enough to go around.

In my quest to find pictures of my hair over the years, I found my high school freshman ID card. Ugh. If I’m telling you about my short, permed hair, I might as well show you. I’ve already humiliated myself on this journey over the years. Why not add visual aids? 😂

I’d never cut my hair that short again, (see photos), it’s just too much work. I’ve found that the shorter my hair, the harder it is to maintain. And it never looks like it does when I leave the salon. Pretty much when I hit the threshold of the salon, everything starts to fall apart. 😂 Clock striking midnight, shoe gone, back to pumpkinville. For those brief, but spectacular, moments before I’m out of the chair, my hair peaks. It looks the way my friend and longtime hairdresser wants it to. And then, it’s in my hands. Which means…. Oh well. 😂😂😂

Please feel free to share your hair horror stories. Or join me in my humiliation by sharing a pic of said horror stories. I’ll be glad to commiserate with you.

Wishing you a peaceful, low pain, no arsenic in your shampoo kind of weekend. 😉

Peace and painlessness,

Beck ❤️

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

Strand-ed

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

Joyful things…..

There comes a point when I have to cut through the busyness of real life – and the chaos and noise in my brain – and just focus on good stuff. Even when that might be tricky. Despite aches and pains (all the usual stuff), I found myself easily refocused on a few really good things this week. I wanted to share them with you.

The first is a scent. Every year, people can drop their Christmas trees at the local park for mulching. The city picks them up as well. Ever since right after Christmas, the entrances to the park have had piles of trees waiting to be turned into mulch. It smells AMAZING. Once that process is completed, they’ll sprinkle it around the trees, making the street smell like Christmas! I LOVE it. It’s my favorite time of year to walk along the park side. It is truly one of my favorite smells ever.

The second is music. I’ve mentioned The Steve Augeri Band’s new album, “Seven Ways ‘Til Sunday,” on my social media. It is my absolute favorite music to listen to right now. And definitely my favorite Steve Augeri music ever. The band sounds great. There’s so much exuberance and texture. There’s just so much to this album for me. When I listen, I just want to run out and touch the world. I can’t explain it better than that. And I know how wacky that must seem. But even the serious lyrics don’t deter from the sense of freedom and joy in these songs. I highly recommend it.

The third is socks. Yes, you read that correctly. Viasox to be exact. If you haven’t watched my YouTube video this week, I show the socks and how well made they are. You know I do NOT endorse things or sell anything, I’m extremely careful about recommending products. But if you’re looking for a diabetic sock, I would check this company out. I’d seen a lot of ads before Halloween. Finally, I went to their website and ordered a pair. Actually, I ended up ordering two because I got a discount on the second “surprise” pair. I haven’t been able to wear a knee sock since I wore a uniform in high school. Any time I buy socks, I’ve had to be mindful of how tight the elastic is at the top. They usually hurt my legs, feeling like a tourniquet. It’s awful. So I started buying inexpensive, pharmacy brand diabetic socks. Then I’d cut the elastic off the top and wear them until they basically fell apart. At least until I discovered Viasox. They are compression socks without the extremely painful rubber band elastic. I wear them every day, thanks to my husband who got me a bundle of them for Christmas. My miles-long walks are not as painful for my legs and feet. I just think they’re a great product. They’re not cheap, it’s an investment for me. My uncle pointed out that it’s like a medical device. He’s right. My CRPS and neuropathy are not made worse by these. If anything, my legs feel more supported. These socks have definitely brought me joy. If you have a favorite brand of socks or anything else, please let me know. I like to find brands that actually do what they say they do. Otherwise, it’s just a pretty sock with a rubber banded elastic top.

A fourth joyful thing is an audiobook I’ve been enjoying: Madly, Deeply – The Diaries of Alan Rickman. It’s his literal daily diaries from the mid-1990’s until his death. What an extraordinary insight into his life and how much he worked. He was constantly on the move, working, supporting his fellow actors. It’s staggering to discover to how much he traveled. He was an actor that I respected and appreciated, and not just because of his role as Professor Snape. Although that really clinched it. I highly recommend the book to all. Or any audiobook! If you have favorites, please share them with me. I’m always looking for new ones to borrow from the library. I keep a running list of books I should try to read. I was on the waitlist for this one, but it was worth it. It makes me want to write more about my day to day, not week to week. At least I do that much, I can’t be too hard on myself for not doing more. Read the book though!

If you can, find a thing or two that absolutely makes you smile. Things that, regardless of the circumstances, will cause you to smile (even internally) because those are your joyful things. When the dramatic traumatics hit hard and fast, hit back with your joyful things. Even if it’s only a momentary reprieve, it’s still a moment better spent. Giving you a rush of endorphins. Giving your brain and body a break. Even if you never tell another soul what those joyful things are, make and keep that list for yourself.

You’ll be glad you did.

Here’s to a week – heck, a whole new year! – of joyful things.

Peace and painlessness,

Beck ❤️

#thisiswhatsicklookslike #strokesurvivor #rsd #crps #arachnoiditis #autoimmune #migraine #sacroiliacjoint #facetjoint #backpain #medicalmarijuana #carpaltunnelsyndrome #cubitaltunnelsyndrome #patientadvocacy #painintheBECK #phantosmia #dextroscoliosis #thoracickyphosis #lumbarlordosis #viasox #steveaugeriband #deeplymadly #alanrickman #sevenwaystilsunday

Three joyful things….

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

And so it begins…..

Here it is! The first blog of the year! And as I was setting it up, I dated it “Blog post, 1/6/22.” 🤦🏻‍♀️ I’ve been pretty careful about checking the dates on things, making sure I’m in the right year. It made me laugh anyway, for all of my efforts to double and triple check the things I’ve had to date in the last week.

Anyway, here we are. I’m not a resolution gal. If anyone asked me about New Year’s resolutions when I was a child, I’m sure I said something about being a better person or student. Getting along with my siblings, perhaps. But as I aged, I realized that not only do I dislike NYE, I reeeeally dislike making resolutions.

The transition from one year to the next always made me sad. I partially blame Barry Manilow’s “It’s Just Another New Year’s Eve,” as ridiculous as I absolutely know that sounds. (Please don’t come for me, C). I love Barry and his music, we grew up playing his albums (yes, the literal, vinyl albums!). But that song always sounded so sad to my young ears. It still does. Hearing it as a kid, it just felt like we were ditching the previous year for a newer shinier one. (Right about now, you’re probably adding this factoid to the list of ways I’ve revealed myself to be a total weirdsmobile). 🤣

As I start 2023, I make no resolutions to myself or to the universe. My goals for the year are simple and consistent: to be kinder, to listen more, and to pay things forward. I spent many a NYE resolving to lose weight, etc. I refuse to do that to myself ever again. It’s unrealistic and unfair. I haven’t known many people who’ve made a weight-related resolution that were able to lose it and keep it off. Bravo to them! But it’s not for me. I know I need to lose weight. But my weight doesn’t respond well to pressure, LOL. It’ll happen when it happens, but I’ll do it without year-related ridiculousness.

I want to make more room for joy. It’s easy to get bogged down by aggravating details. Easy, but not necessary. I will endeavor do laugh more, gripe less. We are a family that

loves to be silly and laugh a lot, so they will certainly help me to do this.

I’m starting 2023 much the same as I ended 2022 – burning foot, back and neck issues/pain. Nothing new in that regard. I’ll see what happens in the next few months, regarding procedures. Whatever comes, I’ll take it one step at a time.

But, as always, I am just very grateful. I am so grateful for the extraordinary people in my family. For the wonderful people in my life. Thank you all. You help me have courage to face all of the dramatic traumatics, your kindness has brought me so much comfort (especially during this last year), and the fact that you share this time with me each week is incredible.

Here’s to 2023! Here’s to what’s next, may we face it with courage, strength, and hope.

Happy new year!

Peace and painlessness,

Beck ❤️

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

A classic start to 2023…

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

The view from here…..

What a year this has been! Every single one of us faced a lot over the last 12 months. Whether it was work, family, health, or a mix of all of the above, we’ve managed to arrive at this moment. We are here and can finally turn the page on 2022. I, for one, am pretty happy about that.

Our rock backpacks may have felt heavier at certain points. I know mine did. I also know that this page, this place, this wonderful community helped me tremendously. Whether it was writing about the ins and outs of my week, or filming videos for my YouTube channel, you made me feel less alone. You made me feel seen and heard. I am so thankful for each and every one of you.

Next year, I want to hear more from you. If I can somehow set up more of a community exchange section, I’d really like to. I want each of you to feel as validated as you’ve made me feel. I’ll have to consult with the technical brains in my life to see how I can make that a reality. To be continued….

The end of 2021 and the start of 2022 were, as you all know, extremely scary for my family. Imagining December 2022 felt too far away and waaay too uncertain. Yet, here we are. Here I am. I feel grounded in the chaotic joy of my life. Right now, I just feel grounded in peace. (That’s not to say that I won’t potentially feel like threat level midnight next week. 😂 But right now? All is calm, all is bright).

Life is ridiculous, hilarious, painful, wonderful, and just plain out of our control. We will undoubtably face things in 2023 that we feel ill-equipped for. But I want you to know that you’re not alone. Even if the most we can do for one another is to provide a safe space to vent, that’s a bigger gift than we realize. Telling someone, “I see where you are. I know that what you’re dealing with is hard. I believe you,” is more valuable than we can possibly imagine. It’s incredibly important.

My biggest wish for all of us is that we can meet the coming year with courage, strength, and hope. And, to quote Jane Austen: “I wish you joy with all my heart.”

Here’s to what’s next! Wishing you and your loved ones a safe, happy, healthy, and peaceful 2023.

Peace and painlessness,

Beck ❤️

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

Thirty minutes and 365 days….

We made it. We made it despite the worries, the challenges….. despite the shock.

We made it.

Sometimes I still can’t believe any of it happened, (I know I’ve said that over and over again). When I look back, it’s like I’m remembering the story of someone else. Everything that played out over the last 365 days, the ups and downs and in-betweens, it all got me to here. And I’m forever grateful for this moment.

As I tried to put into words what this day means to me, I had a lot of trouble. Mostly when I was trying to film this week’s video. It took 12 takes, nearly all of them involved me crying. I ended up posting take 10. 🤦🏻‍♀️

But what helped me a LOT was seeing a post by one of my favorite artist/authors, Morgan Harper Nichols. I took a break from filming, checked instagram, and that’s when I saw it. Somehow, when things are hardest for me, I inevitably find a post from her and all is right in the world. Or at least, in my brain. Her words gave me the ladder out of the emotional black hole I’d fallen into. This is what they typically do. So I want to share them with all of you. And I highly recommend her to everyone. Her social media posts and books are so grounding and vulnerable and real and hopeful, it’s exactly what I needed. I hope they bring you comfort too.

Aren’t they wonderful? I saw them and the accompanying artwork and felt a weight lifted from my shoulders. I truly hope you’re given the same peace.

Finally, throughout this week, the lyrics of a Stephen Sondheim song have popped into my head. “I’m Still Here.” The last section, specifically:

“I’ve run the gamut, A to Z. Three cheers and dammit, c’est la vie! I got through all of last year, and I’m here! Lord knows, at least I was there, and I’m here! Look who’s here, I’m still here!”

I can hear the fabulous Carol Burnett and Elaine Stritch versions playing in my head and feel even more empowered by the words.

We’ve all been dealt difficult hands in life. No one is exempt from that. And our rock backpacks can feel exceptionally heavy sometimes. The dramatic traumatics pile up and can make us feel lost and cornered. But please, please, pleeeease don’t lose hope. Find light and comfort where you can. Don’t let the joy suckers in your lives steal even a match’s light from your heart and your soul. Because even a match’s light still shows. It still warms, however briefly.

Each of you provided me with waaaaay more than a match’s light this past year. You sent me encouraging words and pictures. You shared your valuable time with me. I am beyond grateful. When things were the scariest, darkest, and I truly hit a life and death moment, you all showed up for me. Thank you. Thank you SO much.

I just looked up at my clock. It’s 3:30! The time I feared most. The moment I wanted to get past. Yet all I feel now is peace. It’s been a journey getting to this moment. But I’ve been surrounded by love and support and hope. Thank you.

I’m still here! Look who’s here! I’m still here!

Wishing each of you a low pain, peaceful holiday and a happy, healthy, hopeful 2023.

Peace and painlessness,

Beck ❤️

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