Weekly video #4

New video! Today, I ramble about a whole bunch of stuff and even brought along some Show & Tell. 😂

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

The in-between and why we should all start singing……

Sometimes, when we’ve taken a walk through our neighborhood, we feel like we’ve either just missed something or that something big is about to happen. It’s a strange in-between feeling. The energy in the air is off, if that makes sense. Has anyone ever experienced anything like that?

That’s how it’s been: existing in-between my visit with the doc and….. well….whatever comes next. The energy has shifted. I don’t know how soon I’ll be able to get the X-rays done. I’m not in a giant rush anymore. I talked about that in my video yesterday. https://youtu.be/pwx5kPJHFUE

I just wanted an answer, which was a big ask. Based on my history – on what’s happening in my body – it would have been impossible. I know that. How could they tell what’s going on in my shoulder? Or my spine? Without images, we won’t know anything. I just wish it was simpler. I wish a lot of things were simpler.

Since the visit, I’ve been using the lidocaine/ketamine compound cream and it’s helped. I apply it to my legs, my foot, my back, and wrist. It definitely takes the edge off of the burn, which is amazing. The pain still keeps me up at night, but I’m getting some relief. Some is better than none.

Looking back to the first time my doc prescribed it, I feel a little bit silly. I was so scared to use it – afraid that it would somehow transfer to my daughter – that I opted not to. I filled the prescription, brought it home and used it once, I think. My paranoia knew no bounds. Everyone explained that it would be safe, that she would be perfectly safe. But my head told a different story, one where I couldn’t take any chances. So I didn’t. This makes me think of the pump. I waited three extra years, going back and forth on it, until I literally didn’t have other options. I waited months before I tried medical marijuana, even though I had my card and was eligible. I try not to focus on regretting things. It’s a wasted exercise.

What’s done is done, so keep I moving forward. But I’d be lying if I said it’s hard to not see those moments as times when I could…. should…. have chosen differently. Yet, here we are. The pump saved my life, the cream is helping, and the small doses of medical marijuana that I take help a lot. All’s well that…..it’s not an ending, it’s an in-between. It’s the ongoing story. And this book is loooong. LOL.

I’ve thought about music this week. I’m always thinking about music. Listening to Roo Panes has been a tremendous comfort. I highly recommend his music if you’re unfamiliar with his work. It’s calming and energizing at the same time, if that makes sense.

But we’ve also been talking about how great it would be if people could just start singing and dancing in the street, like they do in musicals. Come ON! It would be amaztastic. I’d love it. I sometimes start singing and wish passers by would join in. Life should be a musical. Everyone should be able to spontaneously break into a song and dance number. We’d all be happier. I’m sure of that.

As I sing and dance around my apartment (mostly in my head😂), I’m wishing each of you the safest, calmest, happiest, most musical type of weekend. Don’t hold yourself back from something that could bring you joy, comfort, or pain relief. Weigh the options and be safe, of course. But don’t let yourself be bogged down by endless lists of what-if’s. Sometimes, those lists keep us from things that could make our lives better. I hope none of you have to make choices like that, but keep it in mind.

May it be a low pain/no pain, low aggravation/no aggravation type of week.

Peace and painlessness,

Beck❤️


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

Here….

What do I want? What am I hoping for?

I wish I could answer each of those questions without sounding ridiculous. Because what I want and what I hope for can’t happen. It’s impossible. And, as I waited for the doctor, that knowledge hurt. It’s not something I didn’t already know, believe me. I was reminded of it in a “wow, now I feel really foolish” kind of way. In a “what the heck were you thinking?” way.

If you haven’t seen the video I posted yesterday, here’s the link. I talk about my appointment. (Here’s a link: https://youtu.be/u92g1Gem0GU).

What do I want? What am I hoping for?

Well, I’d like to sit in a chair and not have my back aching in 4 seconds. I’d also like to have my head not feel too heavy for my body. While I’m at it, I’d like the burn throughout my body to STOP. Today, I’d accept if it could only stop in my left hand. Please. I’d like so many things that I can’t have. (Don’t we all?). I want to not have a chart that would take as many years to explain as it took to accumulate. See? Impossible.

As I sat there, answering the very nice student PA’s questions, my folly became so clear. I went to that in-person appointment, the one I asked for, hoping that my doc would take a look at my back and shoulder and say, “This is ——— and we have the exact fix for it. No worries!” Or something like that. (I know, I know….. writing it down makes it sound even worse than saying it out loud. It doesn’t mean I still wasn’t hoping things would be that easy. They never are though. E V E R). If it involved a magic wand, I’d be thrilled.

Instead, he examined my shoulder and my back. Then he mentioned the “bit of scoliosis” I have. He talked about a muscle relaxant, possibly ordering injections, and – if I wanted – an MRI and x-rays. If I wanted?!?

What I want left the equation back in 1998. First- when I was rushed to an infectious disease specialist to get treated for Lyme. Second – when I sat in a rheumatologist’s office, getting diagnosed with lupus. And third, in 2003 – prior to foot surgery I had to have, when the surgeon diagnosed me with CRPS.

I acknowledge that I’m not the easiest patient. But I really don’t want to take more meds or higher doses of them. I don’t want to have injections in my neck. Also, I may not have a choice. Who knows? Who knows anything beyond right now? Even right now is fuzzy.

We’ve arrived at a different station. A different version of “the last resort.” And more like an “end of the line.” My first pain management doctor treated me with various meds and procedures. But he was always leading to the pump, he called it “the last resort.” We know how that worked out. (If you’re new to the blogs, I’m referring to the posts starting in January, 2016, when my pump broke).

But this is different, and yet not. We’ve exhausted all that I’m willing to exhaust, I guess.

I don’t like feeling medically tired or spaced out, which happens on higher doses of some meds. And I spent years going for procedures, it’s not something I plan to do again. So, what then? What’s next?

What’s next is….. nothing. At least as far as I can see it. It’s palliative time. We’re going through the motions of living with chronic illness/pain/etc. and there’s nothing new to do. And, although I was hoping for the Lifetime movie of the week version of my appointment, it didn’t (cannot) happen and I accept it. I’ll get the new pictures done, it is good to know if there are changes from last time. And I don’t like to see how advanced my “little bit of scoliosis” is, if possible. I don’t know if having injections is the answer. That’s a problem for another day. A day when lack of sleep hasn’t made me so tired that I actually give in and close my eyes for a little while. For a little bit of sleep.

Here’s to knowing. Here’s to answers. Here’s to trying to find answers, even when we know we won’t get them. And here’s to accepting the hurt that comes with the knowing. Accepting what’s real and here and not what we wanted. Here’s to moving forward, even if it’s not as you imagined it would be. When you hurt and you’d give anything to be dealt a better hand.

Mostly, here’s to all of us: getting up to fight another day, even when it’s hard. Here’s to us.

Wishing each of you a safe, calm, low aggravation/no aggravation, low pain/no pain (please!!!) weekend. ((Hugs)) to all.

Peace and painlessness,

Beck❤️


#thisiswhatsicklookslike #rsd #crps #arachnoiditis #autoimmune #migraine #sacroiliacjoint #facetjoint #backpain #medicalmarijuana #carpaltunnelsyndrome #cubitaltunnelsyndrome #scoliosis #patientadvocacy #painintheBECK

If I…..

If I remain perfectly still, I can feel almost nothing. Almost.

That quiet bubble of calm, the peace that shatters the millisecond I move. Then I rise from our bed…. initial stiffness giving way to familiar pains, pains that waited a few overnight hours to announce themselves on this new day.

If I sit perfectly still, I don’t feel my knees. Knees that are almost 48, but feel 148. I can’t hear the crackles, the pops. (It sounds like that breakfast cereal. Snaps, anyone?).

If I don’t move my feet at all, not bending my toes or shifting my ankles, I can’t feel the pain, especially in my right foot. Hallux rigidus. It should be called “HELLux rigidus.” At least that would be honest.

If I sit perfectly still – and I’d have to be a statue for this one – my back can’t hurt. The crick crick crick crick sensation of vertebrae shifting, tick-tick-ticking the time down to when there’s no cushioning left in the in-between. When bone will meet bone, from the base of my spine to my skull. Then what? Arachnoiditis burning across my lower back and down my legs. Perhaps I missed the announcement of my latest flare? No, I just saw it too late. It’s here.

It’s here.

If I sit perfectly still, the nerves of my hands won’t scream up my arms. Shouting like old friends who haven’t seen one another in a long while, but suddenly have time to chat. Loudly. That’s what happened last Saturday evening, just after dinner. I had a spasm in my left hand, the claw making it’s third appearance in two days. But as I worked to free my fingers – to pull them apart – the nerves from my fingers to my elbows kicked off. Across the tops of my arms this time, unnerving me. The claw even decided to show up in my right hand, briefly. No. No. It’s bad enough in my left hand. The hand that betrays me with each pen stroke, with each flex and bend of my fingers. As I write checks or notes, the burn reminds me that I can’t ever completely ignore it. I’m constantly in motion, fidgeting my entire body to find a more comfortable position. (Ha! That’s laughable). It’s impossible to keep my hands still. Imagine one of your hands having a sunburn, not just on the surface though. It’s inside the bones, the nerves, the tissues too. Welcome to life with my left hand. The burn hasn’t completely overtaken it though. At the moment, mid-flare, I’d rate it a stupid 5-6/10. Not too bad, I guess. The most annoying thing about it is that it isn’t always like this! Most of the time, my left hand – a long ago casualty of my CRPS – isn’t much use beyond writing occasionally, existing low on the flare list. More of a hindrance than a priority problem. Ugh. As soon as I think about it, it’s ALL I can think about. I need to move on.

If I try hard enough, the catch and click of my right shoulder won’t overwhelm me. That it hurts when I lift up my arm should concern me more – (of course it does!) – but what can I do about it until I see my doc? Not lift my arm? Okay. I’ll try. Sure.

If I don’t think about it, I won’t notice each pain as it stakes claims throughout my aging body. It’s slightly easier to accept at 47 than it was at 25. I was younger, angrier at the injustice of it all. Now? Of course I still get upset! (If this rant isn’t evidence of that, I don’t know what is). But I think I’ve been in the game for too long, having reached a weird sort of peace with everything. Leave me mostly alone and I’ll coexist with you. (Like there’s a choice involved).

If I can refocus my attention on something else, flare days drag me down less. Books, anyone? But on blog writing days, when I compel myself to acknowledge everything – not ignore it, as per usual – it’s all there, shining on the marquee of my brain. Not as a “This awful thing is happening to someone else!” moment, but as an “OMG! I’m writing about myself!” slap to the face.

If I could remain in the unfeeling bubble, perfectly still, I might. But I can’t, that’s not real life. And I’m not hiding from my reality.

Well…. maybe I would, if I could.
If you were me, wouldn’t you?

May this week be filled with kinder, “if I’s.” May each of you be safe and well.

Peace and painlessness,

Beck ❤️


#thisiswhatsicklookslike #rsd #crps #arachnoiditis #autoimmune #migraine #sacroiliacjoint #facetjoint #backpain #medicalmarijuana #nervepain #carpaltunnelsyndrome #cubitaltunnelsyndrome #patientadvocacy#painintheBECK

When we have to….

Reading has done more for me, over these 47+ years, than I could ever express. It’s allowed me to escape, to love, to be angry, to experience sadness. It’s enabled me to learn, to have a career, to advance my career.

It’s helped me to better understand my medical life. To explain, in detail, what my doctors try to tell me – all neatly printed on plain white paper – since there’s a chance I missed some details. (Especially if I’m upset). To interpret test results. To determine if new prescriptions have side effects. To investigate new symptoms, even though I try hard not to Google medical information. 🤦🏻‍♀️
So many things.

Reading has been a lifeline during the past year. I’ve always been a fast reader. That’s not always a good thing, however. Since my brain trips rapidly over the words, I often have to return to a page (or three) to better grasp what’s happening in the story.

I’m constantly reminded – by books and real life – that we never know what we can survive until we’re forced to find out. Will we adapt and thrive? How much will we struggle? It’s something we can’t fully understand before being given the real world experience. Much like we’ve collectively encountered, living through a pandemic. How much has your life changed over the past 12 months? Are you living exactly the same? Or have you adapted your life in ways you hadn’t imagined possible?

When I was diagnosed, I floundered for what felt like forever. It took me a long time to even research CRPS. And I couldn’t stomach much at the time. It made everything too real. Finding other people with the same diagnosis stunned me, since I’d been wandering alone for so long. Listening to and reading about the CRPS experiences of others frightened and infuriated me. The battles people have waged to be heard and validated, a common theme of having a so-called “invisible illness.” People should hope with every fiber of their being that they never have to know what it feels like to live with our “invisible illness.”

Our strength is often found in the moments when we feel crushed. Having courage doesn’t mean that you’ve faced every problem possible all at once. Courage is taking the next breath, opening your eyes. Maybe it’s getting out of bed.

Brave means something different to each of us. I don’t even want to attempt to define it, that will simply be my projections. What I think brave means. I know what my brave looks like…. sometimes, at least. You know yours.

Here’s to finding ourselves when we least expect it. Here’s to coping when the world stacks a lot against us. Here’s to finding our collective strength, even as we build up our individual fortitude. And here’s to books, for too many reasons to list here. ❤️📚

Peace and painlessness,

Beck❤️

#thisiswhatsicklookslike #rsd #crps #arachnoiditis #autoimmune #migraine #sacroiliacjoint #facetjoint #backpain #medicalmarijuana #patientadvocacy #painintheBECK


Books I recommend:

Just for me

I had this one-of-a-kind shirt made just for me. I’m not selling them. But I had it made to inspire, remind, and cheer me. I’ve created this space, this page….. the words in it. And it makes me proud. ❤️

#thisiswhatsicklookslike #rsd #crps #arachnoiditis #autoimmune #migraine #sacroiliacjoint #facetjoint #backpain #medicalmarijuana #patientadvocacy #painintheBECK

The disconnect….

I slept fairly well last night, considering that I didn’t get IIt sleep until after 2 a.m. But as the hours pass, I feel like I’ve been dragging. I know I crashed after the mid-morning, dessert-snack, chocolate high from our gal’s perfect, homemade brownies. (Sidebar: Omg. I have literally never tasted a brownie as good. Yum, yum, and yum).

But, I digress. A little while ago, I realized I missed my bedtime dose of meds last night. Now that I think about it, it makes sense. I got ready for bed, but it was still too early to take them. By the time I shifted gears to sleep, I’d completely forgotten about them. And then…. 2 a.m. It’s no wonder that I’m dragging. My body’s been trying to play catch-up all day long. Ugh.

Anyway. I had a very frustrating “visit” with my doc on Wednesday. Truthfully, I’d mostly forgotten about it until now. Nothing exciting to report, nothing major happened. It just…. I don’t even know.

The night before the call, my husband and our gal listened to me making my list of points to discuss, to be sure I had everything written down. Thank goodness they did because he remembered things that happened earlier in the month that I hadn’t thought of. The list got longer and longer.
Part of me knew I wouldn’t get to all of it. My brain was already telling me not to pin everything on this call. So I guess I didn’t.

Wednesday morning, as per usual with these calls, I “checked in.” Then, while sitting in my kitchen, I was also sitting in a Zoom waiting room. They have you check in 15 minutes before to be sure you’re not keeping the docs waiting. But it’s a weird in-between time.

I started to make more coffee, then thought better of it. Wanted to grab a book, but not enough to move. Wanted to get up and walk around, but I was too concerned that they’d pick up as I was dragging my phone/tripod through our apartment.

I waited. Then my phone actually rang and I registered the number as being connected to my doc’s office. So I took the chance and picked up. It actually was my doc. He said he couldn’t connect to the meeting, but he saw me in the waiting room. Not wanting to waste time on the tech failure, he asked how I was. I immediately started on my list. Moving from the first to the second items, I realized he’d suddenly said, “there you are!” and our telehealth call was connected. Finally. It only sucked away 7 of our allotted 15 minutes. 🤦🏻‍♀️

It mixed me up. I was trying to find my place. The connection was bad. He couldn’t hear me. I definitely couldn’t hear him. He made recommendations, wanted to get x-rays and maybe an MRI. Prescribed a muscle relaxant. Then it was over.

Have you ever felt steamrolled by something? It was like that. I sat there, lost in it, for a few moments. I made another cup of coffee, stood in the kitchen. Stupid Zoom. Stupid bad connection. Stupid back. Stupid, stupid back. Several of my bullet points pertained to back issues.

Lifelong problem made worse by guarding, weight gains and losses, bad knees, knots on knots on knots (on knots), surgeries, post-op arachnoiditis. Last week was a bad flare week. This week was better. But I feel uneasy by the roller coaster way my body decides to announce itself to me and to those around me. “Good week!” “Bad week!” “Really bad week!” Who knows? Certainly not me, not before I start to move around. Not before I tune in and feel whatever the heck I’m supposed to feel.

Looking at my list, an annoying stack of post it notes, I know they really didn’t make much difference this time. The disconnect could have happened whether I was on that call or sitting in the office. It was a long list, one that a phone call or zoom meeting couldn’t really cover. He understood why I need to see him in person next month, he agreed. I didn’t just want new scans done before he can examine me. What are we scanning for? What good will they do if he hasn’t examined me and ordered the exact pictures he needs? I don’t want more meds, but he ordered a new one. One I’ve taken before, years and years ago. It infuriates me that I can’t remember the details.

What I want, I can’t have. He certainly doesn’t have it. That’s freedom. No more RSD. No more back pain. No more knee pain. No more (where’s that stupid list?)….
I’m tired. My body is tired today…. this week…. this month…. this year. Aren’t we all?

I’m playing catch-up because of that and because of the missed meds. My system reeeeally doesn’t like when I do that. I’m cranky now. I wasn’t earlier. It’s because of the missed meds. Seeing those two pills set me off.

I need another brownie. That set me off on a happy chocolate high. They are soooooo goooooood. Okay, my mood is already improving.

Here’s to lists (when they help and don’t remind you of their uselessness), good connections (and finally being rid of Zoom), not missing doses of your meds (ugh! UGH!), and homemade brownies. (Yes, I will make everything about those brownies until – and long after – I feel better😉).

Peace and painlessness,

Beck❤️


#thisiswhatsicklookslike #rsd #crps #arachnoiditis #autoimmune #migraine #sacroiliacjoint #facetjoint #backpain #medicalmarijuana #patientadvocacy #painintheBECK #homemadebrownies #yestheyevendeserveahashtag

Tastes like……

I’m shocking myself right now. Writing this post five days in advance?!?! On a Monday?!? If I wasn’t so afraid I’d forget the things I want to say, I’d have left it for Thursday/Friday. But, here I am, an organized (sort of) and professional (ok, that might be a bit of a stretch) blogger.😉

So…. latex balloons. Yup. I FINALLY figured out the taste in my mouth. The phantosmia flared up on Friday morning. My tongue was tingling and everything tasted like…… something. It irked me to no end that I couldn’t label it.

By Sunday afternoon, the sensation and taste were grossing me out and ruining everything I ate/drank. Including my coffee. I cannot have my coffee ruined. It hurts too much. Seriously.

[Author note: this is where my “professional” efforts flailed and sank. I stopped writing and it’s now Friday! Back to normal. 😂 I had to stop for a while. “A while” = four days. But at least I got things started on Monday. That, in and of itself, was miraculous].

Then it dawned on me what everything tasted like! You know those bags of latex balloons? You can get them in party supply places, 99¢ shops, and (at least in NYC) office supply stores.

Well, that’s it. I feel like I’ve swallowed a bag of cheap balloons. Yuck. Seriously, yuck. I remember, back when I was a kid, getting those balloons at birthday parties and trying to blow them up. Everyone sputtering and working hard to make it happen, with – more often than not – little to show for the effort. Some kids would get it right away, but it would mostly end with a bunch of tiny, slightly inflated balloons. 😂In a little while, the taste would always get me and I’d give up. But that’s it. Latex balloons. Again, I have to say it: yuck.

That’s been the taste in my mouth since last Friday, on and off. Mostly on. There’s nothing I can do about it, so I can’t get too upset. What’s the point? But that’s the least of my problems this week.

I’ve written about the pain in my left shoulder. Well, apparently, my right shoulder felt left out. I’ve had pain in both, intermittently, for years. But this feels new-ish. New because it’s uncomfortable to raise my right arm. It clicks too, like the bones are working against each other. It’s new because, when I’ve tried to lidocaine the back of my shoulder, I’ve struggled. Struggled to handle the pain of touching my skin. It takes about ten-fifteen seconds before it’s unbearable and I have to stop. That is new. And it makes me angry.
I’ve had that with my legs. I’ve had it with my arms. Never with my shoulders. This kind of new infuriates me. Is it a CRPS spread? I don’t know and it really doesn’t matter if it is. It doesn’t change anything, right? We all know I have CRPS. We all know that it affects most of my body. Why wouldn’t it take even more real estate? 😡

Anyway, I lidocaine as fast as I can before those precious seconds are up and then I move on to the next area. This week, it’s both shoulders, both knees, both calves, lower back, right foot, and – worst of all – a section of my back on the upper right side. (See diagram). That’s a lot of ground to cover. The most that I’ve had all at one time in a long time.

I sleep on my left side and try to keep my legs straight. Inevitably, I’m curled up and have to work a bit to unbend my right leg in the morning. Let me tell you, it’s not easy and it’s incredibly painful. The audible CRACK is always fun to hear. Not.

But earlier in the week, I was dozing on and off during the night. I woke up fully because the pain in my right knee and foot/ankle was so extreme, I wanted to cry. Let’s not forget that this is the same foot with the hallux rigidus, so that’s always fun. The whole thing overwhelmed me. I got up and lidocained everything and went back to bed. You can imagine how well I slept, LOL. This was Tuesday into Wednesday.

I guess it was Wednesday night when I got into bed and started arranging all of my pillows. I merely rolled onto my left side and had a pain that felt like an ice pic going into the right side of my back.

Full disclosure: I have knots on knots on knots (seriously) in my back. I immediately tried to locate the exact spot that hurt as much as it did. It didn’t take long. And the pain is acute to take my breath away. Last night, my husband tried to massage it and felt the knots, but I’m concerned it’s also a tear. I don’t know. The one thing I’m certain of is that I need an in-person visit to my doc. Not an emergency appointment. But one where he can check both shoulders, my knees, and this new spot.

My back is probably my longest running issue. Since I was a kid, hauling a heavy backpack, I’ve had pain. That’s due to the congenital spinal issues, I know. But I think years of walking carefully, “guarding” in every moment I made for a lot of years, all of it contributes to the issues I have today. The knots. The pain. All of it. Even my doc has said he didn’t know someone could be so knotted up. Neither did I, doc. Neither did I.

So I’ll continue to lidocaine everything. I love how I’ve turned it into a verb 😂 I’ll also continue my everyday meds and doses of medical marijuana. That helped me sort of sleep the other night.

Oh! One more weird thing. Every now and then, as I wash my face, I touch a painful spot on the outer edge of my left eye. On the bone. It’s strange because I’d have expected it to be caused by some sort of impact. But I haven’t bumped into anything. And I have to believe I’d remember smashing my eye socket on something. LOL. 🤔

What a week. My doc will be thrilled with me next week. Not only did I screw up my appointment, but I’m also rolling up to the zoom with a suitcase full of problems. Yay!

Here’s to….. here’s to not having the taste of balloons in our mouths, to not having new pains, and to all things calm and safe.
I’ll see you next week.❤️
Peace and painlessness, Beck ❤️
#thisiswhatsicklookslike #rsd #crps #arachnoiditis #autoimmune #migraine #sacroiliacjoint #facetjoint #backpain #medicalmarijuana #patientadvocacy #painintheBECK

Be h o l d……

I had to pick up my medicine from a local pharmacy, earlier in the week. As I made my way home, I passed the building my grandparents lived in for many years. It made me think of my grandmother. By the time the fourth generation of kids were born, she’d become GG. (Some of us might spell it out as Gigi. I always thought of it/wrote it as GG: great-grandma ☺️).

My GG played the piano. She could hear something, practice it, and then play it. I spent a lot of hours listening to her play, as well as singing with her. She often pointed out people’s hands, how they had the “right hands” for playing the piano. It occurred to me that – as a child – I believed a person’s hands had more to do with their musical ability than actual practice. It seems silly now.

Looking at my hands – at my gnarled, short fingers – I know that I definitely don’t have piano playing fingers, at least by those standards. Years ago, my grandma looked at our gal’s little hands and said, “oh Becky, she’ll play music. Look at her fingers.” And when she actually did play? My grandmother smiled and said she’d always known it would happen. She was right. Our gal plays mostly by ear, much like our relatives did. Like my husband does. Guitar and piano.

But, as per usual, here’s where things get weird. As I was thinking about these things, I looked at my right hand and was struck by how odd it suddenly looked. The knuckle of my index finger seemed different, warped. It reminded me of when our gal was a baby and discovered her hands for the first time. She was happily playing in her bouncy seat and I was sitting on the couch, talking to her. Suddenly, she waved her little hands in front of her face and startled. Like, “what was that?” It happened again, same response. But then she looked at her hands with such wonder. I’m so glad I witnessed it.

I started to panic a bit. What the heck made my knuckles change so dramatically? Was my arthritis causing it? I needed to find pictures of my hands, to compare the swelling, etc. And – maybe the most important question of all – had it actually changed at all?

It sort of felt like one of those moments when you say or spell a word, but it feels wrong coming out of your mouth. Know what I mean? You start to wonder if you’ve made it up. Please tell me you know what I’m talking about. 😬🤦🏻‍♀️

That’s how I felt when I looked at my hand, like how had I not recognized such a dramatic alteration in my own bones?!?! Perhaps it was fatigue. In any case, I was fully committed to investigating the situation.

Anyway, the closest picture I could find was one from 2016, which isn’t really a good example because my hands were swollen from an IV. But, despite that fact, my index finger doesn’t quite look the same. Maybe some of you will look at the picture and think: wow, you’ve really gotten wound up over nothing. Others may say: yes, it’s changed. What’s the big deal? And still others may understand that this is me. Worrying about changing knuckles is completely par for the course. 😂

Why am I obsessing over this? Well, between an eczema flare, arthritis, and CRPS, my hands are giving me grief. During dinner a couple of nights ago, I had two spasms that clawed my left hand. I wasn’t prepared for it. (Is anyone ever prepared for that?!?) Each time, I carefully pried my fingers open. After dinner, I found a tub of therapy putty and my stress ball, worked on some O/T exercises

Every now and again, I’ll test each joint in my fingers. Do they hurt? Are they okay? We move our hands constantly, so it’s unsurprising that we might not feel aches and pains unless we’re focusing directly on them.

That’s how I felt, palpating each knuckle. My hands hurt all day, every day. Whether it’s the restless leg-type situation that I have in my hands/arms (causing spasms that compel me to move, flex my hands/wrists/arms until the spasms stop. It’s very painful and annoying), arthritis, or CRPS pain, it’s always something. I try not to focus on it, which is easier said than done.

After half a day wondering if my knuckles were warping, I stopped. If they aren’t, great. If they have, what can I do?
Behold! Here is Beck: a true obsessive-obsessive! I think I need to stop. 😂

Here’s to a safe, calm, low pain week. And to not obsessing over our joints. (At least for now).

Peace and painlessness,

Beck❤️


#thisiswhatsicklookslike #rsd #crps #arachnoiditis #autoimmune #migraine #sacroiliacjoint #facetjoint #backpain #arthritis #medicalmarijuana #patientadvocacy #painintheBECK