Reality bites, painfully…. but not as badly when it’s teeth are unstable…

Whenever the subject of teeth comes up, I think of the scene from “Moonstruck,” where Loretta tells Cosmo (her dad) that she’s engaged. He launches into reasons why it’s a bad match. He says, “I don’t like his lips! When he smiles, I can’t see his teeth. What is he hiding?” It makes me laugh every time. Then I think, Cosmo has a point. Teeth…. those useful, annoying, can’t live with ’em/can’t live without ’em, little buggers.

You might have guessed – correctly – that I’ve recently been to the dentist. For those of you who remember the last adventure, it wasn’t pretty. Having a chronic pain condition that completely short-circuits how you feel pain, makes pretty much any medical/dental procedure a nightmare for you and the people who have to perform it. It took five or six appointments to bond my teeth because the nerve pain was so intense. But my dentist and his amazing staff were really kind.

This time, I was booking my daughter’s pre-college checkups with everyone (eyes, teeth, dermatologist), and I realized it was my turn as well. So off we went. 😬

Layli, the kindest dental hygienist I’ve ever met, remembered what I’d been through and decided on a different approach. She had me use an anesthetic mouthwash before she started. It involved about two minutes of swishing and another two for it to kick in. But it numbed my mouth, for the most part. She patiently spot-numbed as she went, whenever I started to feel pain. It took a little longer. But because she did this, I didn’t need a deep cleaning – complete with injected anesthesia. That’s a big deal for me. And I’m so grateful! Good news delivered! High-fives!

Now for the bad news, LOL. After she examined my teeth, she said, “The dentist is going to confirm this, but one of your teeth is unstable. He’ll tell you what we have to do.”

This was me:

😁—–>😳—–>😬—–>😕—->🤭

Then my dentist came in, checked my teeth and said, “One of your bottom, front teeth is unstable. It can stay like that for years. Eventually, however, it has to be extracted and replaced.” Wait, WHAT?!? Come ON! Apparently, it’s caused by bone loss. My meds, my age, my whatever. Does it matter? RSD and lupus, meds and treatments, fear of seeing the dentist and experiencing more pain… all of it contributed to the current state of affairs. My teeth are apparently hiding that they’re as jammed up as the rest of my body. Geez. You’d think one body part could be loyal. But noooooo. Here’s the kicker! I told them last year that I thought one of my teeth was shifting. They manually checked and did an x-ray at that time, but didn’t see it. I was right! I only wish that I wasn’t.

After asking him questions like, “Will I be walking around toothless?” (“not for a second,” said Dr. Nice Guy) and “Can it just crack out of my mouth if I bite a sandwich or something?” (Also no), I felt a bit better. But it’s still crap news.

Why even tell anyone this? (Aside from the fact that you’ll all eventually see me with my replaced, obviously not my own bottom tooth, LOL). Because this is a less terrifying cautionary tale. I often hear from fellow RSD folks who’ve been through terrible ordeals with their teeth. Painful, costly dental work. Losing every tooth. You name it. And, whether they’ve gone to every checkup or avoided them out of fear, it’s out of their control. The outcome is sometimes the same. With everything we have to contend with, our teeth don’t fair any better than the rest of our bodies. But regular exams and cleanings can make it slightly more manageable.

Please see a dentist. There have been tremendous breakthroughs in dental pain management, I can attest to that! And I have been the BIGGEST dentist-avoider because of my fear of pain. It hasn’t done me any favors. I used to reject anesthesia during fillings just to avoid the needles. I actually had a root canal and an extraction – both without anesthesia – during high school. Let’s just say that the extraction ended with two of us icing our faces. I swear that the punch was involuntary. 🤦🏻‍♀️

All anecdotes aside – what example am I setting for my daughter, if I’m unwilling to go for checkups? Ugh. I sound like a schoolhouse rock or one of those after school special “moral of the story” people, LOL.

But I care about each of you. I don’t want anyone to go through more pain than they have to live with already. Especially if it can – possibly- be avoided.

Brush. Floss. See your dentist. Save yourself time, aggravation and money.

Here’s to minty freshness and years of smiles. 😁

Peace and painlessness,

Beck ❤️

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The beast within…..

Well, I’m back to the place where I keep thinking, “if I could rip my right arm off, I reeeeeally would.” It’s nagging me to that degree.

A few years ago, my doctor said that I have a restless leg-type scenario, but in my arms. The spasms start, becoming painful. Then I’m unable to stop moving, at least for a few minutes. Add carpal tunnel in my right arm and RSD in both…. well, let’s just say my hands aren’t living their best lives. And arthritis! How could I forget that?!

When things are like this, it’s nearly impossible to type, wash dishes, carry groceries or pull the small cart I take on errands. I need my right arm for all of that. Unfortunately, it’s on hiatus.

You’d be shocked to learn that I actually asked for help the other day. My daughter went grocery shopping with me. Both she and my husband constantly ask what they can do. I pretty much always say “nothing. I’ve got it.” This time, I couldn’t do that. So we went to the store. She did everything. I was so grateful, I might have thanked her a few too many times. It’s about feeling like a nuisance, about bothering people because I can’t do my part. My job. She’s always asking how she can help, I just never let her. How silly is that? 🤦🏻‍♀️ Well, needs must. I can’t avoid having assistance now.

At the moment, my right arm feels least painful when wrapped in a cotton sleeve that I cut from an old T-shirt. I can’t bear the feeling of my skin on… well, pretty much anything. And I’m wearing the carpal tunnel brace, using one when I’m out and one for home. I’ve never had to do all of that before. In fifteen years of this crap, I’ve never had to. And doing this in July makes it even more comfortable. Not, LOL. But wearing the brace has taken down some of the swelling in my hand. I couldn’t see the outline of the bones when I placed my hand on a flat surface, palm down. Try it, you’ll see your bones. My hand and wrist are always swollen, but this flare has taken things up a notch.

I pretty much wear a cardigan every time I leave the house. But I roll up my sleeves, mainly because every garment I buy has ridiculously long arms. But there’s also something about having anything on my wrists – even jewelry – that just irks me. But now it’s unavoidable. For the right arm, anyway, it’s full sleeve ahead.

Has anyone used compression sleeves? I ordered one and it arrived yesterday. It seems like it’ll be ok, since I measured one size up. The only snag may be the elastic at the top, that fits around the upper arm. A few hours in, it felt too tight. Actually there’s another snag – it’s a tad too long. But I’m trying to adjust it a little bit. At the end of the day, it’s really just to cover my arm. Whether the fit is perfect or not matters very little.

I’ve also had to start using speech to text more. There are times, however, when I might as well be speaking in Dr. Seuss verses. Then I’m forced to type anyway, correcting the gibberish it thinks I’ve said, which is annoying and painful. That’s why I haven’t been active online as much. I’ve been there, I just can’t comment on a lot. Actually, this blog will be short for that reason.

The beast I’ve been forced to carry, that I have no control over – beyond whatever my meds are doing – is rotten. It flares in heat and cold…. wet and dry weather….. because it’s Tuesday. There’s no rhyme or reason. It just does. I do my best. Sometimes that best requires me to be medical MacGyver. For example, a u-shaped neck pillow is perfect over the arm of a chair, when you can’t just lean your arm on the chair itself. As well as neck bolster pillows as arm support when there’s no armrest at all. I can’t just relax my arms at my side, it’s really uncomfortable. So I carry my neck pillows around the apartment, chair to chair. And then my bed, as arm support then too.

This beast is rotten. But, needs must. I’ll just keep doing what has to be done, pillow by pillow. Sleeve by sleeve. And brace by brace.

Wishing each of you comfortable temperatures, low to no pain. And really good pillows.

Peace and painlessness,

Beck ❤️

Sharing our stories, our truths……

Someone once asked me why I started blogging. At the time, I thought it was about helping myself cope. I’ve since realized that it’s much bigger – and far more important – than just one person.

Why do we tell stories? Why share at all? Stories bond us together, enabling us to find common ground in the human experience. Finding the courage to speak our truth, share our chapter of this massive “book,” is crucial. It’s especially important for people who are living with chronic illnesses.

RSD has given me moments that run the gamut, from being told that “the pain cannot be as bad as (I) describe it” to finding compassionate allies in support groups. RSD is isolating. It’s not recognized like other ailments. So we battle every day for awareness and acceptance. Though we’ve come a long way, there’s still a massive journey ahead.

Actually, I’m going to amend that, all chronic pain is isolating, regardless of the diagnosis. Pain keeps us home… keeps us from participating in events – big and small… keeps us from the important things, like interacting – face to face – with others.

It took years for me to publicly admit that anything was even wrong. Parents, teachers, neighbors – no one knew. I kept it private because I saw how medical professionals treated me early on. I didn’t want to explain my weird health problems. It was awkward and disheartening. So I kept myself to myself. Only those closest to us understood the depth of what was happening. One of my neighbors finally asked me, years into this odyssey. She said, “I keep seeing you and wondering if you’re ok. I just didn’t want to intrude.” I’d run into her, multiple times, on our way to and from the hospital. (Back and forth, pretty much every month or so, for procedures endeavoring to give me relief). Finally, I explained what was happening. That’s when she told me that she’d been diagnosed with breast cancer. It was staggering. The two of us, next door to each other, each keeping massive health secrets from the outside world. From that point on, we were able to talk about the pain, about the things average conversations don’t touch on.

I’d heard other patients talking about their pain at the doctor’s office. It was terrifying because they were so debilitated, so sick. I never joined in. One man’s experience resonated the most. I was sitting in the waiting room when the door opened. In came a man in a wheelchair, slumped and moaning, an emesis basin balanced on his lap. When his companion let the receptionist know he’d arrived, he said, “Something’s wrong with his pump. He’s been throwing up all night.” I sat, immobilized. Was the pump that caused all of this man’s upset the same one they were pushing ME to have implanted?!? Forget it, I thought. No way. And thus, the surgery was put off. But then, I saw the same man a few months later. He looked so different, I barely recognized him. Sitting upright, smiling. I got the courage to ask about his improvement. His answer was, “They adjusted my pump. I feel so much better!” But then we both got called in and I never got to hear the rest of his story. I wish that I had.

Years ago, I found a chronic pain support group. It felt weird to me, sitting in a circle, everyone talking about how bad they feel. I was the only one with RSD. Even my support group looked at me like a freak. Other members were dealing with things like arthritis and cancer pain. Once again, I was an outsider. My relationship with the group didn’t last very long. All anyone talked about was how bad things were, which is important obviously. But there was no encouragement or ways of coping, no “this helped me” or “you’re not alone” type of stuff. And the group leaders seemed more judgmental than supportive. It stressed even more that I was alone. It was depressing. So I stopped attending the meetings. The one good thing that came out of it was learning about the spoon theory. Each of us got a tiny spoon pin with our membership paperwork. I loved the idea of it and being able to explain it to others.

Some of the best things about the online groups out there, are consistent empathy and the emotional boosts. We’re not alone! Of course we vent, we get upset and need to talk about it. That’s imperative! The groups are places to speak your truth without judgement, among people who completely get it. Finding that safe space in a world where people believe you and care enough to understand? Priceless.

Telling your story, your truth, is crucial for everyone. We validate each other by caring enough to listen, to really hear what’s being said. When you’re made to feel like a freak for any reason, it’s a game changer to have others respect you. When people care about your journey – whether it’s medical, social, etc. – it’s as though you’re no longer a ghost. Does that sound odd?

RSD makes us outsiders. Our descriptions of the pain and symptoms make us anomalies. I’ve had medical residents sit across from me as recently as March, looking as though I was just pulling random adjectives from the air. They simply don’t get it. It’s aggravating.

So much of our condition forces us to avoid touch. Having someone innocently brush your arm can cause fiery flares that are agonizing. Getting bumped on a crowded bus or train is inevitable. Having it happen when you have RSD can be a disaster. A spontaneous hug, a friendly arm tap, the snuggles of our children – those human connections often get lost.

RSD-ers rely heavily on our words. Often, what we’re dealing with isn’t visible. During the last couple of weeks, my right arm feels like I have an internal sunburn with piercing pain, under my skin. To the untrained eye, it looks perfectly normal. To me, it’s swollen and discolored. Leaning on an armrest, just sitting with my arms relaxed – it’s all been impossibly painful. Accidental touches are so difficult because, in my head, I’m screaming “THAT HURTS!” Outwardly, I have to calmly say, “my arm is really bad today, I can’t let anyone touch it.” Which, of course, sounds ridiculous. My family gets it though.

Since we have to rely heavily on words, describing the nearly indescribable, we also rely heavily on the words of others. Positive feedback, encouragement, kindness. I think they help us focus on healing, on taking better care of ourselves, because we’re not battling constantly to be believed or accepted. I cannot stress this enough. And not having to talk “medical” is amazing too. Having what some would consider a “normal” conversation, that means people aren’t just seeing us as sick.

Listening, having empathy for another, makes us better people. At least I think so. For those among us being heard or finding that safe place for the first time? That is everything. And you are most welcome here!

Tell your story
. You never know who might need to hear it and realize they’re not alone.

I write not just for my own healing, but for every person living with RSD, with chronic pain and illness. Every patient who’s labored to be understood, heard and accepted. It’s hard for people to put this pain into words. It’s hard for me! But I endeavor to try.

Wishing you good conversations, pain relief and comfort in knowing that you’re not alone. ❤️

Peace and painlessness,

Beck ❤

Revisiting and celebrating……

I was recently reminded of a post I wrote back in the fall. “To enjoy or not to enjoy… the question of happiness,” from November 2017. Around that time I’d discovered a quote that I love – and too often forget to live out – “I promise myself that I will enjoy every minute of the day that is given me to live,” by Thich Nhãt Khan.

So much has happened since then. My daughter graduates from high school on Tuesday! Looking at her, I’m astonished to see a nearly grown woman. When did that happen? I’ve been one of the closest witnesses to her transformation, yet I still find myself surprised by it at times. As she prepares to begin her life as a college student, I’m endeavoring to prepare myself for it as well.

One of my favorite bloggers, http://princessinthetower.org/, shared segments of the post and it reminded me of my goal – to “promise myself to enjoy every minute of the day that is given me to live.” I’m not sure any of us do that as frequently as we should. Far too often, we’re dealing with the real life-ness of life. Pain, doctors, meds, people. And the days blend, one into the next, bleakly at times. I wish it was a simpler promise. Simpler to live up to. But, as it’s not, how about we promise to try? I can certainly do that.

This particular week makes it easier. I’m busting with joy because I get to watch my daughter begin a whole new chapter of her life. It’s exciting. And bittersweet, of course. Just the other evening, we were watching footage of her second birthday. In the movie, she’d spent the afternoon bouncing around the living room – asking me to sing the Tigger song, from “Winnie The Pooh.” She loved that song and the character, lol. “Again… Tigger?” she’d say, repeatedly. And I’d sing, laughing along as she danced happily around and around. Nearly making herself dizzy. “Again…. Tigger?” LOL.

I don’t advocate anything that would knowingly make us dizzy. But I’m a big believer in finding what makes us joyful and replicating its presence in our day to day lives. Whenever we can.

So here are my words from seven months back. Seven!

Thank you, @WriterJoMalby. Your support helps renew my resolve to keep writing, keep hoping and keep moving on. And, once again, I renew my promise to enjoy every minute of the days given me to live. ❤️

And everyone, please check out:

http://princessinthetower.org/ A blog that matters. One that truly does the hard work of advocating for all of us. ❤️

❤️Beck

—————————————————————

To enjoy or not to enjoy… The question of happiness…..

Have you ever read something that impacts you so much that you keep going back to it? I have, many times. Recently, I’ve been returning to the quote, as seen above. “I promise myself that I will enjoy every minute of the day that is given me to live.”

Attributed to a Vietnamese Buddhist monk, Thich Nhãt Hanh, who travels around the world for speaking engagements and retreats. He’s also an advocate for peace. Did I mention that he’s 91? I’m only 44 but there are days that I feel 200. And I generally don’t travel beyond a 10 mile radius.

It made me wonder, can anyone make that promise? Somehow I imagine that he can, especially since he said it. I bet there are countries around the world where people can live up to that promise. Places that can boast of regular vacations for all, healthcare for all and longevity. I picture the beautiful people in the movie, “Eat, Pray, Love”, drinking wine and eating fabulous meals. That’s not my life, or the life of anyone I know. LOL.

But can we make that promise? Too often, we get clobbered by “real life.” For most people, the everyday concerns about jobs/finances/healthcare/family care take priority status. People simply cannot enjoy every moment. There aren’t enough hours in the day. Throw health issues onto the pile and you’re just asking for a lot. Getting a life-changing diagnosis is too much.

I don’t want to get maudlin about it all. But if I’d asked the same question of myself ten years ago, I probably would have cried. That was pre-pump, pre-spine surgery, pre-real relief. Things were difficult. I was difficult to deal with, I’m sure. Maybe not all the time, but I’m 100% sure my family coped with a lot. I’ve written about this in previous posts, so we don’t have to relive it now.

“I promise myself that I will enjoy every minute of the day that is given me to live.”

There’s another quote, from the movie “You’ve Got Mail,” that I often think about, and never shared with anyone. As I sat in the theater – crying over the fictional romance between Kathleen Kelly and Joe Fox – I was struck by a simple comment made by Meg Ryan’s character: “Sometimes I wonder about my life. I lead a small life – well, valuable, but small – and sometimes I wonder, do I do it because I like it, or because I haven’t been brave?”

It’s a good question. I’ve started and stopped so many projects because I didn’t think people would like it or I just didn’t have the energy. And that was before RSD. Since my diagnosis, of RSD and lupus before that, I’ve been just brave enough to carry me through each day. Baby steps brought me back to life, becoming a substitute teacher and a costumer. Way too many times, my husband had to convince me not to give up, that I could manage.

And what about enjoying things? Since I’ve started school again and started to feel more like a “normal person,” whatever that is, I’ve warmed up to the concept of happiness. Personal happiness. I’m thrilled for others and I’ll be the best cheerleader anywhere when it comes to my loved ones and friends. But it took a long time to wake up the idea that – medical crap or not – I’m entitled to be happy, to enjoy life.

Getting sick is awful. Your life stops in those awful moments, “You have ——.” I know for a fact that when my podiatrist looked at my foot and said the words, “I’m sorry, but I think you have reflex sympathetic dystrophy. It’s rare, but I think you have it,” the air got sucked out of the room. I could hear him talking, but it was like listening through a fish tank. It took years for life to improve, to even consider happiness.

I can already tell that this is rambler. I’m sorry to those of you who’ve gotten this far. And a GIANT thank you if you’ve made it all the way to this word without asking, “What the heck is she going on about?”

My life is blessed. My health has reached a somewhat steady pace of calm, (famous last words), even with my knee, arm and back issues. Even with the day to day discomfort. Even with…. blah blah blah. My small but valuable life is worth every second and I should try, even when the fatigue is kicking me down, to live my best life

That said, my best life may include days when I can’t do more than walk to the store or make dinner or just sit and binge on Netflix & gummy bears. Maybe I’ll power through days when I can get to Manhattan and walk around for hours. The days when I have a class and have to drag fabric or texts, I will revel in those days. I accept that those moments may be my happiness. Happiness that we’re eating sometime before midnight. Happiness that there are new episodes of a favorite show, (Hint, hint @Bosch and @Stranger Things. Happiness that I can look up and see the magnificent texture of a tall building. Happiness in supporting those with the same diagnosis as me, to help them on their bad days as they help me with mine. There’s power in that.

If that is enjoyment, then I can make that promise. “I promise myself to enjoy every moment of the day I am given to live.” And I’ll mean it.

Wishing the same for each of you. You’re lives are worth it. You deserve to enjoy each day, even if it’s just a moment or an hour. You deserve it. ❤️

Peace and painlessness,

Beck❤️

The value of words, the value of us… varied interactions….

Finally meeting Cleo Wade!

Meeting Elaine Welteroth

Last week was interesting, to say the least. I had two conversations that stand out. One left me feeling sort of stunned and empty. The other lifted my spirits beyond measure.

Let me back up. The “ick” one was earlier in the week anyway. My regular six week appointment with my pain management doc was late Wednesday afternoon.

So there I was, bouncing between errands in preparation for my daughter’s prom (which was Thursday night). Basically, I needed to get this over with. My doc arrived and asked how things had been since we last spoke. I told him about my hands….. again. It was strange because they were really bad last week and I wasn’t even working. My theory is that the humidity jammed me up. But the tremors, those I can’t explain. My hands shake – not all the time, but enough to be annoying. And I had that lighter against my right big toe sensation again. It woke me up at 5:30 one morning. The pain was so bad that I nearly woke my husband up. Despite waking up startled, I stayed in bed, willing the burn to stop. It didn’t. It stayed with me all day, making me limp around. 😞

So the doc listened. Typed stuff and listened. Then he turned to face me. “Well, there are things we can do for the hands. Stellate ganglion blocks are one option.” At this point, he started weighing out the pros and cons of stellate blocks. I’ve had about ten of them over the years. They didn’t really do much. Who knows if they’d even help now?

Then he said, “We can also do a trial for a spinal cord stimulator.” Wait…. WHAT? How’d we go from stellate block to threat level midnight?!? Did I somehow misremember the six months of “no one is EVER operating on my spine EVER again as long as I live because of the non-stop complications from THIS spine surgery!?! Kicked off by the pump breaking….. sliding brutally into withdrawal…. culminating in the pump explant from hell?!?” Did I forget anything? No flipping way, man. No way.

I might have laughed. It was one of those, “this isn’t actually happening” conversations. Even though it was mere seconds between his suggestions from the medical textbook of no way and my reaction, it felt like slow motion. “Ummmm… no. No thank you.” Said with one of my characteristically incredulous “seriously?” looks. He laughed, saying, “I know how you feel about having anyone operate, but please keep it as an option.” At that point, it seemed rude not to thank him, so I said, “thanks. Ok.” NOT. He was the one who operated. No, no and a heaping spoonful of noooooo.

So there was that. Then my daughter had her prom and she looked amazing. She’s just….. well, you all know how much I can gush about my baby girl. ❤️

On Saturday, I was crashing from post-prom-frenzy and feeling flare-y. But I gathered myself together and trekked into the city. Waiting on line for over two hours, I had the chance to finally meet an author I truly admire, Cleo Wade. She wrote a very special book, Heart Talk: Poetic Wisdom for A Better Life. To say that I merely love this book is not saying it strongly enough. Cleo was at a street fair, sitting at a table under a tent marked simply, “Are you ok?” Her signs merely said “free” and “peaceful and loving conversation.” No big name tags. No huge advertisement for the book. The people who had no idea about it walked by slightly confused. Those of us who knew it was Cleo’s booth, patiently waited for the chance to speak with her. And she spoke with each of us, at the table, for at least 10-20 minutes, per person. That’s rare.

The only reason I even found out about the book was because I follow the former editor of Teen Vogue Magazine, Elaine Welteroth. She’s a dynamic young woman who works exceedingly hard to connect with young people and motivate them to take control of their lives, educate themselves on important issues, and a host of other positive things. She’s just very cool. They both are!

As the mom of a teenager and since I work with preteens, I try to keep my finger on the pulse of what’s happening in their lives. Who’s influencing who, etc. So Elaine mentioned this wonderful book and I decided to check it out. Absolutely the right move. It’s my gift book this year. For me, it’s up there with The Trumpet of the Swan, (one of my absolute favorite books ever), The Alchemist, and others from my “MVP books with the power to change/better us” list. *Spoiler alert, my nieces and sisters are getting copies.*

It’s usually in my purse, full of page tabs and highlighted sections. It’s not something you have to read like a novel. Just open up to any page and take it in. I’ve shared some of it with my young dancers and my daughter. If you’re connected with me on social media, I’ve shared her words many times. In person, she’s warm and inviting. She’s like the friend you’ve had forever.

Anyway, right before my turn, Elaine turned up to check in on Cleo. I was so star struck by them. They’re both so down to earth, it’s slightly disarming. After I mentioned how I came to find the book, Cleo invited Elaine over to meet me. We all sat at the table. They asked me about my life. I told my story, medical and costume-wise. Then we all cried. We chatted about my daughter. I thanked both of them for their work and their words. There’s so much noise out there. It’s extremely hard to find the good voices. I feel very lucky to have met them.

We spoke about the times I felt lost…. that I very nearly stopped writing the blog. Questioning what I bring to my readers, to the members of my group and the RSD community at large. Each time I fell into that rut, I’d read Cleo’s book. Something about it would boost me up. Then I could connect with people who positively influence and remind me that we all play a part. Our words matter.

It’s not my expectation that every blog will be a home run, that they’ll resonate with everybody. But if they help one person – cheering them up, providing information about treatments that they’re contemplating, whatever – than they are worth writing.

We all have power. Our voices are worthwhile and worth sharing. Each one of us has a story that’s gotten us to this moment, right now. Never forget the value of your words. Thank YOU for being willing to read and share mine.

Sending each of you the very best wishes for a calm week, full of opportunities to share yourselves with the world at large. You never know who needs that connection, right now. ❤️

Peace and painlessness,

Beck❤️

P.S. Cleo held my hand and gave me a mantra. One that she hopes will help me as I move to my next chapter: endeavor to be flexible. Our relationships, our roles, our interactions are constantly changing. The more flexible we are, the better our relationships will be. The better we will be to ourselves.

I’m trying.❤️☺️

Imaginative magic…..

Hello friends!

I’ve been busy these last few days, trying to help my daughter get ready for her high school prom. Although I still can’t believe that she’s done with this chapter, I’m very excited to see what’s next.

We attended her final high school concert last Friday evening. It was fantastic. The students performed music, danced, sang. It was a fun night. And I got some costume ideas out of it. The best, however, was seeing our gal, on the stage singing “Rebel Rebel,” with her class band as backup. This, while playing the electric ukulele.

My husband has been a musician for most of his life. Our daughter, however, never played an instrument until high school. In a mandatory freshman class, she started with guitar. The expression, “like a fish to water” comes to mind. After exceeding the complexity of the class, she taught herself advanced skills in her free time. During junior year, she added a piano class. Additionally, she purchased a guitalele, (a guitar/ukulele hybrid), and taught herself to play. Talk about inspiring!

As a kid, I took flute lessons. Man, did I resent that. It felt like a punishment. Ugh. Now, I look back and wish I hadn’t been so shortsighted about it. As I’ve said before, singing was my performance love. Dreaming of Broadway and stardom, I settled for performing in the classroom, in school shows and even in church, for a time.

My advice to kids is this: if you have the chance to play an instrument or learn a creative art, DO IT. Don’t question the amount of practice required. Don’t complain that your grandmother is making you play each time you visit, especially when you don’t want to. Don’t roll your eyes at your mom when she asks you to play for your grandmother. Just do it. Just do it. I look back on those days when my hands were arthritis-free, I was healthy & had energy. Where’d it all go?!?

My energy left me somewhere in my second decade. Or it started to taper off. By my mid-twenties, I was well immersed in medical drama. It was only after the birth of our daughter that I started sewing again, (beyond replacing buttons). Halloween costumes, doll clothes, toys whose stuffing started deserting them – I loved making things.

I know inspiration was with me through all of that, obviously. Turning my daughter into a giant cupcake came from somewhere, LOL. But it stayed mostly quiet for a while, at least until I walked into that dance studio. Armed with ideas and no real clue about what the job would become, I was mostly hoping I’d be able to help. In the end, I met someone who’d become one of the most important people in my life – my friend and mentor, Michael.

Since I first joined the online RSD community, I’ve met quite a few artists. Some had been before their diagnosis. Some started afterwards. It’s always excited me to find out snippets of who we all are, under the cloak of “RSD patient.” We all wear it. But there’s so much more going on. Plus discovering others who continue to create, despite the drama of pain, brings me tremendous satisfaction. And pride.

Mary Mattio, my friend and fellow blogger, is one of these incredible artists. She’s what I call a triple threat: writer/artist/leader. She made me an inspiration book – aka my portable office – where I can write and sketch. But she also sent me a birthday present that I keep on my workspace all the time. It’s a spoon. Actually, it’s my extra spoon, boosting me up on days when I’ve essentially used up my reserves (see the spoon theory explanation below). It’s a great reminder that I can manage, that I’ll get through whatever needs to be done. And pretty much one of my favorite gifts ever, from someone who absolutely gets it.

Mary’s blog, a site that I readily recommend to everyone: abodyofhope.wordpress.com, is a rich example of living and thriving. Additionally, she founded a Facebook page called Chronically Inspired, a creative space for people living with chronic illness. Not only does Mary live with RSD, she continues to advocate for others facing similar journeys.

Actually, I think I was reading her blog before I met her through the group. I’m not going to lie, I was a little star struck by that. Reading her posts helped further my resolve to make this page more permanent and consistent. She helped me realize that our voices matter. That what we say and do helps inspire other people, as she inspired me. And on and on and on. Seriously though, find her blog and start reading!

We never know where imaginative magic will strike, where it will appear. I’ve made costumes based on seemingly unrelated and ridiculous things. Things that served as my muse for different shows. All of it worked in unexpected ways. That’s the beauty of inspiration. Part of what makes it so personal to each of us.

That leaf was on the sidewalk as we walked home on Sunday afternoon. I imagine that most people stepped on or over it, without seeing its heart shape. I think I walked four or five steps beyond it before realizing what I’d just seen. Backtracking, I took the picture. Between the contrasting colors of sidewalk vs. leaf, and the shape, I wanted to use it as a reminder to be more aware of my surroundings. To be alert to the muses in my environment.

Here’s to recognizing everything and everyone around us – exceptional people and this fantastic universe – and letting the magic in. We never know what will come from it. 😉

Peace and painlessness,

Beck❤️

(From Wikipedia: The spoon theory is a disabilitymetaphor and neologism used to explain the reduced amount of energy available for activities of daily living and productive tasks that may result from disability or chronic illness. “Spoons” are a visual representation used as a unit of measure in order to quantify how much energy a person has throughout a given day. Each activity requires a given number of spoons, which will only be replaced as the person “recharges” through rest. A person who runs out of spoons has no choice but to rest until their spoons are replenished.)

The unavoidable “must come down” scenarios of life…..

Sunday:

Finally emerging from the comfort (read: pajamaness) of my apartment, I was a little bit surprised to feel the chill in the air. Especially considering the fact that I literally got no sleep last night because I was so warm. My skin felt alive, and not in a “healthy glow greatness” kind of way. It was miserable. Forcing myself outside was difficult but necessary. A walk always clears my head. Today’s excursion gave me time to reflect on the past few weeks (and pick up groceries, ☺️).

This was the first time I wasn’t able to periodically watch the show. In years past, I’d make sure the kids were ready and then go backstage with them as they gathered in the wings, ready to dance. That didn’t happen this time, until the finale. I’m a little bit sad about it. I adore seeing their hard work pay off. And – let’s be honest – we all like to see the fruits of our own labor pay off too. I know I sometimes look out at the stage and think, “They look great!” And then I remember, “Hey, I helped make that happen!” LOL.

Show prep during the past five weeks – plus going to classes – absolutely wore me down. And yes, talking about a measly 180+ hrs of work when there are people doing full time, crazy hours every single day of the year might seem like a “give me a break” roll your eyes kind of moment. It’s not, trust me. Especially when you can’t reliably do full time work because you have an unreliable full time chronic illness. One that flares whenever it wants, amping up an already precarious situation. It makes me worry about my future prospects. Two great days or weeks might be followed by weeks of bad. A month of tolerable may be followed by another of raw skin and muscle spasms. There’s no rhyme or reason to this thing. I mostly ignore the everyday aches, burns, fatigue and whatever else, as long as I can get the important things accomplished. I do pretty well, until I don’t. Until things can’t be ignored.

I’ve been very lucky in the way I’ve almost trained my body not to react to show stress, at least until the final curtain closes. Once that happens, it’s a sort of slo-mo out of body experience. Seriously. My brain gets the signal that it can finally recognize what ails me. I’m aware of what’s happening around me, but also painfully aware of every sensation I’ve ignored up to that moment. It’s like a race against the clock to wrap things up for the night and get myself out of there. I usually walk home though. The fresh air, (any air is better than that of a room filled with nervous preteen dancers, LOL), helps me shake off the hot air from the dance studio (it’s always waaaaaay hot in there). According to my mom, it’s unhealthy. Truth is, it’s not. Colder air makes a dancer’s muscles tighten up, so it does need to stay warmer. But ugh, show nights are brutal. 😬

Since the only parents who volunteered to help backstage were the parents of kids performing (they obviously wanted to see their kids dance!), I recruited one of my older sisters and my mom. ⭐️MAJOR shout-outs to these amazing women!!!!⭐️ They both said they “didn’t do anything.” Trust and believe that they did. I could NOT have managed without them.

Because the kids are always separated by grade, I needed another adult to stay with one group as I assisted the other. The solution, since we only have the one dance studio in the basement, is to put the other kids in a classroom upstairs. I absolutely got twenty workouts in, going up and down the stairs over and over. Anyway, mom was in the studio with the eighth grade and my sister was in the classroom with the seventh. It was slightly chaotic, to put it mildly. But we managed. I kept hearing the song “I get by with a little help from my friends,” in my head, as I ran back & forth. Hold on! I actually asked for help again!!! Progress!!!!

My goal was to get all of the laundry done on Friday. The reality was….. not that. It was stay in my pajamas and sleep periodically while resting for the day. It was pretty much the same yesterday. Not sure what I was playing at, making that ridiculous laundry goal, LOL. It’ll get done Monday…. probably. 🤷🏻‍♀️

By the sound of the applause, the show was a success. Another one in the books, my 14th at the school. Well, the 17th, if I count the drama productions. My mentor and the kids were so happy and that brings me tremendous joy. I cannot ask for more than that. ❤️

I hope the weekend was calm and restful, a renewal for whatever this week decides to throw at us. It will undoubtedly be interesting. 😉

Peace and painlessness,

Beck❤️