The why……

link to yesterday’s YouTube video:

Tuesday, 5/4/21

I just finished getting three X-rays. It was a radiology experience unlike any other, at least for me. I’ve had many X-rays in my life, over 30+ years, but this one took the cake.

To start, I had to go to one of the newer buildings on the hospital campus. New to me at least. The last time I’d been in that area, there was a lot of scaffolding and signs heralding what it would all look like upon completion. In NYC, as in most cities, one gets used to years of construction taking place in each location. So when it’s finished, we’re sort of taken by surprise. “What’s different about this block?” “It’s the scaffolding! It’s gone!” When you’re no longer shrouded in shadows, suddenly standing in sunlight on a street that absolutely was akin to walking in a tunnel, it can throw you off. LOL.

Anyway, I walked into the cavernous lobby, prepared to scan the barcode I received when I checked in online. I walked up the ramp to a table, the temperature station. They asked me if I’d had covid symptoms, if I’d encountered anyone with such symptoms, and if I’d traveled in the last 14 days. (Does walking to the corner mailbox count as traveling? No? Well then, no, I haven’t gone anywhere).

After that, I was directed to a bank of screens to type in my barcode number. Sort of defeating the purpose of giving a barcode. Especially since the system didn’t recognize my number. I received the message: the system cannot process your number at this time. Of course not. That would make all of this too simple. It would make it quick. The man monitoring the screens seemed annoyed. I was thinking, “blame the technology, sir. Not me.” 🤨

He sent me to the main desk. The computers were slow there, but the woman at the desk was able to find my appointments. Thank goodness. I received the requisite hospital bracelet and was directed around the corner to another security guard.

She told me to scan my bracelet and the gates blocking the elevator bank from the lobby would open. It took some maneuvering on my part, trying to twist the bracelet’s bar code to face the scanner, but then a green light appeared and the plexiglass gates swung open. On I went.

Exiting the elevator into a very fancy waiting room, I was greeted by a staff member. She showed me to a seat in the waiting room, which was really a giant, elegant lounge. Moments later, a technician brought me into a huge X-ray room, with the biggest machine I’d ever seen.

First, he set up to get images of my shoulder. That only took a few minutes. Then had asked me to stand and step back from the table. I must have looked confused because he said, “I’m just going to adjust it so we can get the pictures of your back.”

Adjust it? This was unlike anything I’ve seen before. This massive machine rotated from horizontal to vertical in mere seconds. The arm holding the camera rotating with it. I’ve had a lot of X-rays, none of them were on a table that could “Matrix” around at the push of a button. When I asked if all of the tables could do this, he said, “No. These machines are our newest. The others didn’t have that capability.” It was awesome. Technology is an incredible thing.

Wednesday, 5/5/21

The call with my doc went worse than I hoped. As I mentioned in yesterday’s video, asking about results he hadn’t seen yet seemed to throw him for a second. But he looked for them and tried reading them out to me.

My pain has been out of control. My sleep time is next to nothing. My head was in panic mode. Apparently, my shoulder X-ray was normal. It’s not bone related. This is good news, but I still don’t know what’s happening with my shoulder. I know I should take the victory here, but it’s not a victory since we don’t know why it hurts all the time. This will require an MRI. It could be a tear, it might be my rotator cuff. He can’t be sure without an MRI.

Next up is the lumbar result. He reads quietly for a moment and then says that my hardware is stable. This is good news. And I am relieved to hear it. No one wants hardware getting loose. I don’t want to have to deal with that. No thanks.

My thoracic spine – my enemy at the moment – is where he pauses the longest. He starts to say, “So…. T12….. it looks like you have a slight spondylolisthesis…..” Then he cuts himself off and starts to talk about how my spine is more curved than it should be. And then launches into potential pain relief options.

No! I want the full report. But he’s talking about diagnostic nerve blocks. Facet injections. Radio frequency ablation.
NO. NO. NO. I am not doing that procedure ever again. No ———ing way. Not happening. And I dare anyone who asks why to step into my body, go back in time, and relive the hell that was my procedure and the months that followed. No way.

That’s when I broke. I explained that my pain is at a 7-10/10 every day. And I cried. He stopped typing, looked at the screen, and said, “I’m so sorry. I’m really am sorry. We’ll figure it out.” He’s incredibly kind. He always has been.

Figuring it out involves nerve blocks. It involves more medication. It involves living with more out of control pain until something gives. I can’t take the way my body feels right now. And there’s literally nothing I can do about it. I’m taking my meds, my breakthrough meds, my medical marijuana doses, using ketamine/lidocaine cream, lidocaine ointment. And hoping for relief. Sitting, standing, lying down….. it’s all a nightmare of ache and burn.

I wait to see the full reports but they never appear in the system. Calling the office late in the day, they tell me they’re going to message him to release the results into the hospital portal. But nothing’s happened, so I figured it was because of the late hour.
There’s nothing I can do.

Thursday, 5/6/21

Apparently, only the radiologist can officially release the reports into the portal. Not the ordering physician. This is news to me. Despite my anger – which very nearly bled all over the nice woman who answered my call – I waited on hold to see if I could gain access to the reports. And waited. She returned to the call and explained that nothing would be online until tomorrow, Friday. It took every ounce of my energy not to take it out on her. Instead, I thanked her for trying and hung up the phone. Tomorrow. I can’t see my messed up spine until tomorrow.

Friday, 5/7/21

The email came early this morning, alerting me to the fact that I had new test results available in the portal. I have no idea why, but I didn’t sign in right away. Maybe some of my rage and ridiculousness burned off overnight. Maybe it doesn’t matter what they say. Maybe I’m tired and the pain has gotten the better of me. Seeing the words in print won’t change the outcome. Naming whatever is happening at T12 isn’t going to undo whatever is happening at T12. Right? So who cares at this point?

I do. Sadly, I really do. Whenever pain enters the picture, when we live with it for a long time, we want answers. The why. The how. How do we fix it? How do we make it stop? And when those answers don’t come, it’s devastating. We need to name these things that hurt us. And we need to prove to the doctors, nurses, specialists, whoever that what we’re talking about is REAL. That we’re not being dramatic or lying. What we are is scared and sore and angry. And though NO ONE wants a positive test result, (meaning that something is wrong), we simply don’t want to prolong the not knowing. We’re desperate to find “the why.” And as desperate to discover “the how” to fix it. “The what” we need to do to make that happen. We want all of it. And we don’t always get it.

My thoracic X-ray says that there are problems. Phrases like “chronic multilevel degenerative disease,” and “exaggeration of thoracic kyphosis,” and “diffuse mild/moderate multilevel thoracic endplate degenerative remodeling.” Whatever the hell that all means.

My back has been a mess my entire life. Why should now be any different? 😂 I don’t know what I’ll do, treatment wise. The facet injections weren’t terrible. My doc said that if we can try to take down the inflammation, it could help. If the inflammation goes down, the strain on the vertebrae could ease. Meaning decreased pain. Hopefully! This is the goal. So I’m back on prescription-strength Motrin again.

And if the diagnostic injections help, then he’s confident the back pain can be treated. I want that more than anything.

We’ll see what happens.

Peace and painlessness,

Beck ❤️


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

0-10…….

A lot of years ago, I was asked by the doctor who must not be named to rate my pain on a scale of 0-10. I’ve told these stories before, but I find the lesson to be relevant every day of my life.

Rate your pain on a scale of 0-10. Or – even worse – on a scale of 😭 to 😁.

When that $&@!?&$ asked me to do it, I was sitting in his office with my baby daughter at my side. She was watching me. I was desperately trying to remain as calm as possible while this demon poked my heel and ankle. I said, “10. It’s a 10.” He said something about how the pain couldn’t be as bad as I claimed, since I was sitting there calmly. No tears. No shrieking. Meanwhile, I’d done both at the prior visit. When I explained the reason for my demeanor, he dismissed it. And me. It wasn’t long after the visit that I was completely dismissed from his practice, saying that his colleague was much better suited to handle my “difficult case.”

Difficult case, my ass. He didn’t want to deal with me. I should have demanded better for myself. I shouldn’t have settled for his disbelief, disdain, and disregard for the pain I was ABSOLUTELY in. That’s a lot of dis words, but you get my point. I deserved better. We all do.

Another jacka$$ told me that I was a “hysterical woman who should get off of the couch more and stop eating bonbons.” Yeah, that’s a direct quote. I sat there, thinking “no, you did NOT just insult my gender, my weight, and my pain all in one shot.” But he did. He surely did.

It took a lot of time, doctors, and patience to finally get to a practice that listened. To not feel entirely on the defensive at every turn. But that pain scale. Ugh. I’ve never trusted it or taken it seriously. To quote Maria Von Trapp, “how do you catch a cloud and pin it down?” How can I wrap up my pain in a neat little bow? I can’t. I’ve tried. But I can’t.

I know not everyone has this issue. When you’re not living with it every day, it might be simpler. For example: a visit to the ER with a broken limb, an injury requiring stitches, etc. Things like that. I’m not saying that everyone can scale-rate their pain easily. But, it has the potential to be more straightforward. Or maybe my reasoning is complete crap. I only know my own experiences with them have been difficult.

Each time I visit with my doc, I have to fill out an electronic survey about how I’m doing. One area of my body at a time. Neck: rate your pain. Left arm: rate your pain. Right arm: rate your pain. And so on and so on. These surveys irk me to no end.

Maybe I’ve just been at this too long. Maybe having to justify all of it to doctors who didn’t believe me burned me. You say it’s a 10, they look skeptical. You say it’s lower, well maybe you don’t need those meds. It’s like being attached to a yo-yo. Yes, my pain is bad. Yes, I need the meds. No, I’m not crying out. But that doesn’t invalidate my experience.

People have no idea how much a person can handle, how much we don’t show outwardly. I’ve mastered the art of looking relatively “normal.” If you looked at me, I doubt you’d know that I have pain all over my body. Do I need to perform “The Agony Dance” to make you believe me? I guess some medical folks need that “proof.”

“I guess you’re not in as much pain as you say you’re in……”

I rage when I hear that. But when it was said to me, I closed down. What did that idiot want from me? It doesn’t matter now, decades later. Regardless of how much it still aches to hear it, regardless of who it’s said to.

Rate your pain. Assign an arbitrary number to it. Okay, sure. I’ll say this, I surprised myself last weekend, with my shoulder. If you’d asked me on Saturday? I’d have said, “10/10.” No hesitation. No question. The pain was so bad, between the shoulder and my leg and my back. I was panicking and not in a great headspace. I haven’t rated anything 10/10 in a lot of years, it didn’t help me to admit my pain was that high. What good would saying it do?

The reactions of some made me question myself: maybe it’s not that bad. Maybe it’s less than a ten. Maybe I can keep going like this. No one had the right to do that to me.
No one has the right to tell another person, “You’re not in that much pain.” “It can’t be as bad as you claim.” “You don’t seem that upset about it.”

How do they know?!? They DON’T.

I could rant about this forever. The bottom line is that pain is personal. It’s subjective. I learned in nursing school that pain is where the patient says it is, it’s as bad as the patient says it is, it’s exactly what the patient says it is. There’s no debate. It’s not a negotiation. So doctors (or any medical professional) telling us it’s not that bad isn’t just cruel, it’s ludicrous!

I need to leave this here. As I’m typing, I’m getting angrier. In my drive to advocate for myself and others, I acknowledge that pain scales don’t cause everyone the same angst that they bring me.

It’s just critically important that those who ask these questions are really prepared for the answer, prepared to treat every patient with dignity and respect. The need to be ready to meet people where they are. Exactly where they are. To hear. And, more importantly, to truly listen.

Peace and painlessness,

Beck ❤️


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

And I find myself….

I was standing in my kitchen, trying to calm myself on a very painful night.

The pain in my neck, back, and legs wasn’t more than I could handle. It didn’t keep me from doing the things I needed to do. But I couldn’t ignore it. I couldn’t avoid it. I was stuck on a loop, stuck in the part of my brain that must manage my emotional state when my pain is that bad. It’s not a good place. Sometimes, I panic. And as I stood in the kitchen, arranging tater tots on a pan, (and having already done all of the things I was supposed to do in a case like this: lidocaine, medical marijuana, extra meds), I was willing myself to stay as calm as I could. And kind of failing. Focus on the music. Focus on the music and keep breathing.

I’ve only been listening to Roo Panes for a short time, his music is so calming to me that I’ve just been absorbing it into the background of my brain. Usually, I put it on while I write, read, and cook. Well, especially on nights like that.

It definitely wasn’t a “sing and dance as we cook” night. If that was the case, I’d have put on the Foo Fighters, Mötley Crüe, G N’R, Queen, Elton John, the BeeGees…. I could keep this list going for a while. But it wasn’t like that. I was centering myself as well as I could. Pain = noise, at least in my head. And it was LOUD in there.

I was trying, really trying, to get to a quiet enough place. That’s when I heard it:

“Oh, I’m a warrior! Oh, I’m a warrior!”
I have been listening to that playlist for weeks, hearing but not listening. The words had been blurred in my consciousness. At least until the universe made me stop and actually LISTEN to them.

Just stop and listen.

“Oh, I’m a warrior! Oh, I’m a warrior!”

Wait…. what song is it? What are those lyrics? Restart. Listen. Restart. Listen. Smile. Laugh. Repeat. Why laugh? Because I usually pride myself on locating songs that do exactly what this song, “Warrior,” does for me. I find them – usually – and share them with others. This time, one found me.

Please take a moment to listen to it:

https://youtu.be/cQtECByqBrk

Merriam-Webster defines a warrior two ways (see picture). I relate to the second one: “a person engaged in some struggle or conflict.” (Aren’t we all?) Additionally, when I think of a warrior, I think of someone powerful. Someone who’s strong. Someone who brings the experiences, history, strength, and courage of many with them as they go. The energy of many.

I don’t take CRPS on as an individual, not all the time anyway. I take it on with every single person who’s had it before, who’s fighting through it now, and who’ll have it in the future. It’s not uncommon, when living with a chronic illness, to say that you’re a (fill in the illness) warrior. The CRPS community certainly does. I don’t mind it at all. It truly makes me feel less alone, less adrift.

On that Tuesday night, while making dinner and feeling the way I felt, I needed the reminder: “oh I’m a warrior!” I couldn’t believe it as I listened for the fourth time, a message from the universe to help me out of my head. This song raised me out of that internal pit, it absolutely dragged me out. For all of that, I’m truly grateful to Roo Panes. The songs are all beautiful, I encourage everyone to listen to him.

I needed a good reminder yesterday as well, for a few reasons. First, I didn’t fall asleep until 6 a.m. because my left leg was on fire for the second night in a row. The ache and burn has extended around to the back of my leg. I couldn’t take it. Between that and my right shoulder, (which is the worst it’s ever been), I’m on edge. I can’t move my arm without causing my shoulder pain, but can’t lift it more than shoulder height without a ten/ten pain scenario. I need to move that X-ray up, if I can. And lastly, since I was so tired, I drifted off yesterday afternoon and somehow deleted my entire nearly-finished blog. This? What you’re currently reading? It’s my attempt at remembering what the heck it said. I loved what I had written. I’m okay with this one. 🤦🏻‍♀️ When I startled myself awake, I was holding my phone. I looked at the screen and the only word on the page was “Mom.” 😭 I felt so sad, so burned by the moment. Then I remembered, “oh, I’m a warrior!”

Sometimes, the universe kicks you into gear when you need it the most. I need all the help I can get. Don’t we all?

“Sing, I’m a warrior! Sing, I’m a warrior!”

Wishing you a week of strength and calm.

Peace and painlessness,

Beck❤️

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

**Note: I was reminded that some of the t-shirts I wear in my Thursday vlogs aren’t always available. 🤦🏻‍♀️ I apologize for not giving a heads up if that’s the case. In any event, this one is still selling! It’s by Glennon Doyle, Momastery and it’s on Zazzle. The link is below.


https://www.zazzle.com/be_kind_ladies_black_t_shirt-235410645247016570

Every possible outcome…..

One spring afternoon, I was working on an art project with the kids at school. Before they’d arrived, I carefully spread tarps across the wooden floor. This involved taping them down – using blue painter’s tape – until they were secure. I then spread brushes, paper towels, and paints across each of them.

The kids arrived, clearly surprised at what awaited them. But they were thrilled. A couple of them even jumped up and down, asking, “What are we doing?” Once everyone was present and seated, we explained our plan for the afternoon. They were painting their t-shirts for the upcoming show. And they couldn’t have been happier. Their excitement was contagious.

I instructed them to line the inside of their shirts with a piece of cardboard, so the paint wouldn’t leak through or stick the front and back together. Years before this memory, I learned that lesson the hard way. I always kept scrap cardboard for this purpose.
My planning was meticulous. Previous experiences showed me what I needed. I made sure I had everything. At least I thought I’d planned for everything.

Over the course of the session, the tarps ripped in multiple sections. I didn’t notice because I was going from group to group, constantly moving. Each time the plastic tore, the students took pieces of tape and tried to repair each rip. They’d realign the segments, add tape, and keep right on painting.

By the time we were finished, we had 34 amazing, custom-painted costume shirts. They were so proud of their work. The mood was extremely happy. Plus, it was one less thing I had to complete by myself! I think there were 25 pieces of choreography created for that showcase, each one requiring different costumes for 10-36 kids. When I think of the math involved in the shows I worked on – twice a year for nine years! – it makes my head hurt. Truly.

After school, once everyone was gone, I often stayed for an hour or two to clean up or finish a few last-minute things. That fateful afternoon, I started rolling up the tarps and was stunned to see as much paint on the floor as there had been on top of the plastic. Confused as to how it happened, I started checking the tarps. Only then did I see the snares and tears, each space that the paint leaked through. Our work area covered a 6’x20’ area. All I could think about was damage control: What the heck would I do if the paint was hard to remove? What the heck brand were those tarps that they were so easily destroyed?? (Another lesson learned that day: buy the pricier, thicker tarps. You’ll be glad you did).

Fortunately, I had cleaning supplies and was able to remove the paint. It took a while, though. After my initial panic, I calmed down, knowing that it I never would have used paint that was THAT permanent. Good grief. What an ordeal! But why did I share this story?

Because life happens.

We can take every possible precaution. Prepare for every eventuality we can imagine. Have contingency plans. We can do everything right and life will still happen. Things will go wrong. And, sometimes, they’ll go really, really wrong. All of us learned something about that over the last year: going about our lives, doing the best we can, only to have a pandemic knock us off our feet.

Much like life with a chronic illness. No one wants to get a life-changing diagnosis. No one wants their entire life upended. No one wants pain, every single day. I take my meds. I stretch. I follow up with my doctors. I take my meds exactly as prescribed. I’ve done everything right, mostly. But there’s nothing I could do to avoid most of what’s happened in the last 20 years.

We can plan and plan and plan all we want. At the end of the day, some things are simply out of our hands. Don’t get me wrong, of course we have control. But there will be times, situations, etc. over which we have none.

I often wish that I knew the moment when CRPS planted itself in my foot. If I knew, then maybe I could have done things better. I don’t know. I’d have been more aware, paid attention, done whatever I could to stop it.

Life happens to each of us. Whatever we do after that impact is what counts. It’s the moving forward that matters. There will be additional hard times, mistakes, other unforeseen circumstances. It’s life being…. well, life.

Paint spills. Glitter gets everywhere. Pain flares. Muscles ache. Fatigue increases. Dinner will be late. We’ll oversleep. We’ll see beauty in the world. We’ll snap at people that don’t deserve it. Meds will fail. Test results will break our hearts. We’ll find things that bring us joy. We will laugh. We will despair. Confusion will rule the day. Every plan we make might fall apart.

But here we are. Here we are, leaning on one another. Here we are, getting through another day. Doing the best we can.

May your plans be executed flawlessly. May things work in your favor. If they don’t, may it all be simple to reroute and try again. May the coming week be a low pain/no pain, low aggravation/no aggravation kind of week.

Peace and painlessness,

Beck ❤️


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

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