This flare is annoying. I wish I’d taken pictures of the redness over the bridge of my nose, spreading across my cheeks in the familiar butterfly pattern. But I didn’t. So now, when I see my docs next week, I’ll have to try and remember when it started and how it looked. It’s faded a bit. And with all of the mask wearing, it’s sometimes hard to gauge whether it’s irritation from that or just my usual stuff. This time, however, I’m inclined to think it’s a flare. Because of everything that came with it.

The last week has been a blur of bad sleep, back pain, leg pain, BIG time phantom taste/smells, the lymph node from hell flaring up – painfully – and the rash. The node started in on Monday. And I only noticed it because it hurt to apply deodorant and to rest my arm at my side. It isn’t as swollen, just a bit harder and quite sore.

Have you ever become immobilized by things that happen over and over? By the exhaustion of patterns that repeat and remind you that you’re not in control?
I have. I am. I am officially exhausted. It seems ridiculous to even write it. Here I am, repeating yet another pattern: talking about all of this. Again! Flare. No flare. Flare. No flare.

The sacroiliac pain started to twinge when I stretched to reach for something. I stood up, slowly, and waited. It stopped, for the moment, and I went on with my night. That was on Monday.

Tuesday morning, little pangs every now and again. Not too bad. But, that afternoon, my gal and I were out running errands. I had been on my feet for a long time. We stood for a while. It was then that I realized that I had a very short window of time before my back locked. We made our way home. I’d barely reached the top of the stairs to our apartment door when my back clicked, locked, and rendered me stuck. Taking off my coat was tricky. Hanging it up on one of the wall hooks was impossible. Our gal is detail-oriented and misses nothing. I figured it was better to tell her, especially since I had to ask her to hang my coat for me.

The next few hours were spent with extra meds, my TENS unit (probably applied for longer than they’d recommend), and careful stretching. It wasn’t long before my joints unstuck themselves. The layer on top of all of this is arachnoiditis. As per usual, having the flare of one thing ignites the flare of all things in my body. Between the lack of sleep (my dark circles have dark circles and my puffiness has puffiness) and the autoimmune flare, I reeeeally wasn’t feeling my best. Across my lower back and down my legs – the. burn, ache, and rawness. Weird though, it’s a burning burn but it also feels like an ice burn. Imagine having Icy Hot traveling throughout your peripheral nervous system. Up and down your back, then up and down your limbs. Ick. As I type this, I’m wrapped up in warm clothes and a blanket to keep my arms and legs from getting more internally cold than they already are. It just amplifies the pain.

On Wednesday, I got a text to confirm my appointments for next week. How the heck did the time move so quickly? I’ve got two scheduled: the neurologist and my pain doc. Same day, two hours apart. The advantage to this is that they’re in the same office. I figured it was easier than having to make two trips into the city. Two birds….

That’s when I remembered that nothing is ever simple. That insurance companies require precertification for pretty much everything. I’d totally forgotten. After calling my doc to check in about it, I was told that they “are working on it.” Soooooo, the injection may not even happen. I can’t decide if I’m bummed out or secretly thrilled.

My back is in crisis mode. I know things can’t continue without some intervention. And, although I’m nervous to go to any doctor’s office right now, I’m relieved that I’ll be able to see my doc in person. It’s been 7 months since I’ve done that. The neurologist might be able to tell me why I continue to taste and smell things that aren’t there, why my tongue usually feels like I’ve eaten a box of Red Hots without the cinnamon. Or coated it in pepper.

I’m a weirdo. 🤦🏻‍♀️😂

We’ll see what happens. Next time you tune in, I’ll have either gotten the shot (and relief!) or begun the process of getting approval. Or maybe I’ll have canceled it altogether.

Here’s to whatever good things the universe would like toss our way. Here’s to ebbing flares (pleeeease). Here’s to Friday and to calm. I’m going to continue to wrap up and rest up.

Peace and painlessness,

Beck❤️

#thisiswhatsicklookslike #rsd #crps #migraine #phantosmia #lupus #flare #autoimmune #arachnoiditis

Back in 2016, over the course of four weeks, we experienced the loss of three beautiful souls. At the time, I was at a loss for words. And that, coming from me – a perpetual talker – is saying a lot.

I had a doctor’s appointment days after the second loss. It was one I couldn’t cancel because all of my timed prescriptions depended on it. So there it was. I went through the motions, talked to my doc (who was lovely and kind, as always), and then waited to check out at the front desk.

As I sat, completely lost in my own thoughts, I became aware of the conversations around me. The waiting room was packed. An elderly woman – who, for the purposes of this post, I’ll call Ms. P – stood at the counter, trying to convey what she needed from the excruciatingly rude young woman behind the desk – I’ll call her Ms. E.

Ms. P was trying to talk about tests that had been ordered, follow-ups to be made, etc. Ms. E was having none of it. She yelled, “TAKE A SEAT!” dismissively over the counter, startling everyone in the room. Ms. P looked shaken up, to say the least. But she slowly got to a chair and sat down. This behavior continued for the next few minutes with the next patients. People got yelled at and shut down at nearly every turn. I couldn’t believe what I was witnessing. Speaking to patients like this, to an elderly person especially! I was seething.

My turn came and Ms. E continued her tantrum-like behavior. I flipped out. I completely lost my cool. As it was, I had a tenuous hold on my emotions. I was genuinely struggling to keep myself together. But she tipped me over the edge. It was sort of a blackout moment. I was days past our second loss and completely unaware that we were merely days away from the third – a hell unlike anything I’ve ever experienced. So I was fragile and angry.

I’m fairly certain I said, “STOP….. just stop! You CANNOT talk to people like this!” She kept trying to interrupt me, yelling, “EXCUSE ME. EXCUSE ME,” over and over. Finally, I said, “NO! I will NOT excuse you!” She was startled into silence, gaping at me. I continued, “You cannot speak to people like this. Do you have any idea how hard it is for all of us (gesturing to the other patients) to do this?” I took a breath, looking around at my compatriots and seeing them nodding. One man said, “you tell her!” But at that point I was actually gripping the counter, knuckles white and strained on the edge.

And I wasn’t done yet. People had come out from the back of the office and were watching this happen, shocked. The staff members who know me were wide eyed, waiting to see what I’d say or do. So I continued, “This is just wrong. YOU are wrong and WE’RE ALL IN PAIN!”

Then, I got hysterical crying. I was sobbing. “My friend just died. And my other friend died two weeks before that. I didn’t mean to flip out but you need to figure out a better way to work at the front desk of a chronic pain office.” No one moved, no one spoke for a couple of seconds. Everyone just stared at me. Then, J, the super nice man that usually works the desk said, “I’m so sorry, I really am.” Then he moved behind Ms. E, shook his head and mouthed his apology again.

That’s when the office manager came out and I became “Mrs. McClintock,” (having usually been addressed as Becky, per my own invitation to the staff there), she invited me to come back into one of the exam rooms. But I only wanted to leave. “No, but thank you. I just want to make my follow up appointment and get the hell out of here. I’m done.” They moved Ms. E to the back, though, and J took over. He said, “give me a moment and I’ll get you out of here,” with a kind smile.

I sat down – still weeping a bit – because I was afraid I’d fall over if I stayed upright for one more second. And then I felt a hand patting mine. Ms. P. She smiled at me and said, “Thank you, honey. You didn’t have to do that. But I am grateful. It happens a lot, in other offices too.” That statement fueled my anger again, “But it shouldn’t! It’s wrong and she knows it.” I became aware of the rest of the waiting room, staring at me in solidarity.

Another man said, “she’s like that every time I come here. Someone had to put her in her place.” 😬 I wondered for a split second if I’d have reacted the same way, sans grief. But I know I would have, minus the crying. The only thing missing was all of us waving banners as we marched to storm the gates. Ms. P then said, “I’m so sorry about your friends.” Unable to say anything else to her, I nodded, smiled, and returned to the desk when my name was called.

The manager and J apologized profusely, to me and to the rest of the waiting room. My outburst was about as far from my usual behavior as one could get. I’m always pleasant, always friendly. But I snapped.
Loss affects all of us. These anniversaries come around and bring renewed sadness along with happy memories. It’s par for the course.

I found the included Charles Dickens quote quite by accident. Who among us hasn’t been broken by life? By grief? Heartbreak? Illness? Each time I am challenged, I feel like I come back – albeit slightly altered – much like a patchwork quilt. A mix and match of emotions, pain, renewed purpose, and the call to get through whatever it is. It’s not easy, especially when these life moments cause those I love so much pain. But they must go through their own breaking, just as I do, knowing I’ll be there on the other side of it. Just as they are for me.

On that day, I’d become an avenging advocate, and I’d do it again in a heartbeat. Perhaps in a quieter way, but who knows?

Wishing each of you strength during and after the breaking, courage to hold on, and the knowledge that you’re not alone.

Peace and painlessness,

Beck❤️

#thisiswhatsicklookslike #arachnoiditis #migraine #rsd #crps #charlesdickens #greatexpectations

Yesterday morning, I woke up and realized that part of my face was numb. Like novocaine numb. At first, I thought it was just around the left, lower corner of my mouth. But it was most of the left side of my face. Good morning, weirdness! It lasted until the early afternoon.

And I’ve been managing the pain of my left leg. It’s ebbed a bit, thankfully. But it’s there. Like my shadow.

While I’m listing my complaints, I’ll add my left arm/hand, my neck, and my back. No, my back hasn’t decided to calm down. If anything, it’s more involved now. The injection appointment is set for early November. We’ll see what happens between now and then.

I’ve realized something this week. I constantly refer to the various segments of my RSD, the “what hurts today”: my hand, my leg, my back, Blah Blah Blah. Instead of dealing with myself as a whole person, I constantly refer to myself in parts. Pieces of a ridiculous, sort of broken puzzle. Sort of-sort of. I’m more than that.

I am more.

I think it’s because I try to compartmentalize the pains and the “what can I deal with first’s.” It’s easier if I only have to manage one bad thing at a time. Otherwise, it would be more complicated and – to be honest – overwhelming. It’s unquestionably a coping mechanism that my brain has worked overtime to maintain.

Sometimes, I imagine myself wearing an invisible horse blinder, (aka a blinker. I didn’t know that’s what they were called until today). If I can’t see more than what’s directly in front of me, I can’t fall apart. Not completely. But I’m more than that.

I am more.

So what to do? Occasionally, it’s hard to take it all in, even after 20+ years. The last 17 years of RSD have been quite the roller coaster. Somehow, I’ve survived the onslaught of issues. Some days, I’ve been a little worse for wear. But I’m more than all of that.

I am more.

Don’t get me wrong, there are days when I cannot separate things. Days when I panic because of how my body feels, when I’m caught off guard. Days when “divide and conquer“ seems like a bad joke and not a solid plan. Those days are, mercifully, uncommon.

How do you handle your pain? Your illness? Life beyond the medical? What coping strategies do you employ? I’m fairly certain that I’ve always done things this way. I was absolutely clumsier about it in the early days, (not that I always do a stellar job now).

My stubbornness is pretty well established, in print and in real life. I wish I wasn’t that way, believe me. I’m also completely convinced that my beloveds share that wish. 😂

There are so many things that I am that have nothing to do with RSD or anything medical. I am more than that.

I’m so much more. I’m a wife and mother. I’m a reader. I’m a “Twilight Saga“ fanatic. (Sidebar: there better be more books coming that tell the rest of Edward’s side of the story. I’m looking at you, #StephanieMeyer. I’m almost finished with “Midnight Sun,” and that aggravates me to no end. What started out as a favor to a friend, to objectively read “Twilight” and judge whether or not her elementary-school-aged daughter could read it, became a dedication to reading ALL of the books for myself. LOL). But back to my list! I love glitter. (No, seriously, I LOVE glitter. Especially silver. But since I learned about how bad it is for the environment, I’ve cut back). I love Mötley Crüe, Van Halen, Guns N’Roses, Def Leppard and Metallica. I’m an avid movie soundtrack lover, especially anything instrumental. (I’m currently listening to Michael Timmins’ exquisite “Maudie” score). I love making/styling costumes for my dancers, student and professional. I absolutely, unapologetically love coffee. I’ll watch a favorite movie or tv show over and over, not caring that I’ve seen it all many, many times. (“Downton Abbey,” “Sex and the City,” “The Office,” and so many more). True crime podcasts and paranormal tv shows? Absolutely! Old movie classics are a must. I love BBC period dramas, Jane Austen, and “Breakfast at Tiffany’s.” I love the art of Frida Kahlo and Georgia O’Keefe. My favorite designer will forever be Alexander McQueen. I love so much. I am so much, too much to list it all here. (And I’ve already thrown a lot at you, 😂).

I am more. So are you.

Whatever your list is – the bad and the hard things, the pain and the medications, the tests and the treatments – I’d like you to make another list. The list that says more about you than the medical. All of the ways you are more. All of the puzzle pieces that bring you joy and make up the rest of you. Try it. Even sitting here, listening to music and creating the list above, made me smile. I’m also aware that I reveal a little more of my weirdness to you every week. 😬 And yet you’re still here! Thank you for that.

You are more. Make that list and, if you’re comfortable, please share it with me!

Wishing each of you the knowledge of the many ways that you’re amazing, of what you uniquely bring to the world. And, as always, I wish you a calm, low pain week. We deserve it.

Peace and painlessness,

Beck ❤️

#thisiswhatsicklookslike #rsd #crps #arachnoiditis #migraine #sacroiliacjoint #iammore #stephaniemeyer

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It’s been a week since Splintergate. Thankfully, I haven’t had anything even close to that happen in the last seven days. So that’s something. But, things aren’t quite back to “normal.” (As a side note, that word should be banned).

On Wednesday, I had my monthly follow up with my pain management doc. Unfortunately, it was a Zoom call. Why unfortunately, you might ask? Because Zoom calls sometimes sound like you’re speaking from inside a fish tank. Echoing and loud, LOL. He apologized profusely for the hospital’s switch to using Zoom for their telehealth calls. Again. As he does on every call.

But, I digress. I was able to tell him about my back. He listened and typed, asking questions. At one point, he had me stand up and show him where the splintering and the locking had been. He pointed out that it’s the sacroiliac joint area. I’ve had issues there before, on my right side.

It’s hard to believe that we’ve been using video in place of regular, in-person visits for months already. A service I actually said I’d never use. Granted, I said that before the world imploded on itself. It was months before things shut down. Months before I’d ever heard of covid.

And then we reached the point where he would recommend things. I’ve already been using lidocaine every day, on my back and left leg especially, so he didn’t have to tell me to. Sidebar: in all the time they’ve prescribed lidocaine ointment, I have NEVER used it as much as I do now. My lower left leg is in a permanent state of feeling like a sunburn – that nagging, raw feeling when even fabric hurts. The lidocaine takes the edge off. He also asked me to take my prescription Motrin around the clock for the next week, maybe two, to see if that helped at all.

And then he said, “When you come in to see the neurologist, I want to see you. And I want to maybe do an injection. Let’s schedule it and see where we are in November. If you’re doing better, we don’t have to. But if it’s aggravated, we could try to calm things down.”

And I agreed. I actually agreed to let them schedule it. He seemed momentarily surprised by my instantaneous, “okay.” But moved on quickly. What was I thinking? Probably about relief and not letting the nerves getting more inflamed and out of hand than they already are. It was a weak moment, LOL.

Every day, my back hurts. Every day, I get at least two twinges of nerve pain in the part of my lower back. Like they’re biding their time, waiting for me to be unguarded so the splintering can happen again. (That sounds almost as weird as my absolute conviction that there is an assassin squirrel on my street that loves to jump out at me. Every time I’m on my own, it leaps across the sidewalk or out of a tree and then legit stares at me. It DOES. And it’s real. My family just smiles and nods, I know they think I’m losing it. They haven’t witnessed it, which is exactly what assassin squirrel wants……. 😬 I’ll get back to the blog, now that you all know some more about how odd I truly am. 😂).

Okaaaay then. So that’s how the call went. He needs to examine me in person. I need to take care of my back. Each time we reach a crossroad – some place I have to make decisions about more invasive measures – I’ve always refused outright. This time, I guess I need to be in less pain. I guess I need to not ignore what’s happening and face it head on. Maybe it’s nothing. Maybe it’s inflamed nerves and arthritis and CRPS colliding in a small space. As dynamic as our body is, even little negative changes impact us tremendously. The more damage I have in each of my joints, the uglier the overall picture gets. My puzzle is filled with many damaged pieces, it just is. So if I can remedy any of that, I will.

Anyway, so that’s where we are and where we’ll remain until November. Who knows? I’ll likely change my mind and refuse what is sure to be a painful injection. I’ll put it off – the shot, not seeing my doc in person – and keep on keeping on. As always.

Or maybe I won’t. We shall see. The things we do for relief, peace of mind, having even one bad thing stop for a while. Maybe stopping it altogether, if we’re lucky.

Until then, I’ll just keep loading on the lidocaine and hoping for the best. ☺️

Wishing each of you a safe, calm, low pain week because that’s what we deserve. ❤️

Peace and painlessness,

Beck❤️

#thisiswhatsicklookslike #crps #rsd #migraine #arachnoiditis #sacroiliacjoint

Most of us live in a state of duality – the side we share with company and the side that few people get to see. It’s unguarded, silly, relaxed, peaceful. I’ve mentioned the masks we all wear. But – and this may be just my own weird theory – I think anyone living with chronic pain has a third mask.

It’s the one we wear to shield those closest to us from the worst of what we live with. That mask is hardest for me. We try to keep our “home” face on, but it slips. My fellow warriors will know what I mean. I’m sure most of you will.

I often feel like the photo: my masks are merged into that one orange leaf. Everything I’m dealing with: the pain, the worry, the meds – all of it – are represented by the green leaves. That’s how it feels sometimes.

This post is a challenge to write for a few reasons. For starters, each time I document the events in my medical life, they become more real. More solid. They’re out in the world for everyone to read, for me to re-read and remember. That’s more painful than you might think. And then there’s the reality that I might have to get tests done. That I’ll have to deal with it.

I. Hate. That.

The hardest part of acknowledging my third mask is knowing that my beloveds are going to read this and be upset. They’re going to be worried. I cannot see that right now. I know it’s out there, and I love them for it. But I need them to trust that I’ll ask for help, that I’m taking care of my pain, and managing the best ways I can. And that I CAN manage. I have to keep going. ❤️

Okay, now that I’ve started this in the weirdest way possible, here we go.

This week, I had a few scary episodes involving my back, left arm, and left leg. I was not at home at the time of the first one. Out of nowhere, I felt what I can only describe as a numb-adjacent splintering, nerve sensation on the right side of my lower back. Like something had blown apart, each tiny fragment a burning ember. Each of those embers landing sharply a few millimeters from the epicenter. It scared the heck out of me. Stunned me into stillness, actually. But that made me nervous too, because – at the moment – standing still in the street isn’t optimal. Venturing outside in my neighborhood is something akin to playing “Frogger.” People have become complacent, leaving their masks off and hanging out together. I usually bounce along, crisscrossing from one side of the street to the other in an effort to avoid as many people as I can. Believe me, I only go out when I absolutely have to. Pharmacy and grocery, no long, luxury outings for me. I miss the days when we could just meander, walking everywhere. Stopping in bookstores and making wishlists of future reads. I desperately miss those outings.

As in other areas, our local restaurants have been granted outdoor seating privileges, so a lot of formerly empty sidewalk/curbside areas are now taken over by tables and chairs, by people. So as parts of my back were choosing to seemingly explode, I was trapped between two groups of people, some of them unmasked, at a corner. I carefully semi-hobbled across the avenue, pausing on a side street. The splintering happened again. And then again a couple of minutes later. It burned. Badly.

I wasn’t close enough to home to simply turn around. I was more than halfway between home and my destination, but closer to my goal. So I went for it, slowly and carefully. The splintering didn’t happen again, but the burning lingered. It shot down my right leg. Then seemed to stop.

I’ve been having a lot of back issues lately, truth be told. The length of my spine is consistently hurting. I think my neck is effecting my left arm. Some nerve (or nerves) is pinched – causing pain, numbness, and weakness all the way to my fingertips. Then there’s the left leg drama. As I was trying to figure out how to cope with the splintering/burning, my left leg and arm decided to drag a bit. They felt sore and weak. It felt like an ambush. My left leg has consistently nag-burned this week. It’s raw and uncomfortable, almost all the time lately.

But I pressed on once everything ebbed, trying to finish my errands and get the heck back home. As I waited on line to check out, I shifted and my back locked. Like the old days. The way it would painfully pop in an off way, sticking me in whatever uncomfortable position I was in. It nearly brought tears to my eyes – partly because it hurt and partly because I wasn’t expecting it to happen.

I stretched gently, as much as I could while on line in a store, and managed to unlock myself. I paid and made my way home.
By the time I got settled, my back/arm/leg were all flared up reeeeeally badly. Lidocaine ointment, CBD balm, extra pain medication, tens unit – I used them all. And I got through the evening.

Sleep eluded me last night. There’s no good way to rest when every body part you’d usually lean on is essentially screaming, “Are you kidding? No way!”

But coffee helps. Reading helps. I’m about 31 books into my 50 book challenge. That’s something. It’s finally fall, my favorite season. That’s something.

Mask clicked back in place, though now no one will be fooled. Sometimes I imagine these blog posts to be the conversations I cannot have. Relaying the depth of the pain, the adjectives I assign to my pain – it can’t ever happen like it does in my mind. It’s too much, too graphic and angry, too filled with despair in my flaring moments. I don’t want to dump that on anyone. But, here, I guess I do. I do it in person too, just not as often.

But this helps. Writing about it all, (mostly) without traumatizing those closest to me. It’s unavoidable though. If you are the patient, or the caregiver, or an incredibly supportive ally – it’s awful to write about and read. But I am so grateful for each of you.

Sometimes I disconnect and imagine I’m reading about someone else’s experiences. Then I remember, “that’s your life.” Ugh.

We shatter and we come back together. We fall apart and return to our whole selves. We wear the masks, we take them off. They slip a bit, we adjust them. Click them on, lock them in place, and on we go.

But here we are. Our versions of “normal.“ Our versions of “whole.”

Click, lock, and on we go.

Peace and painlessness,

Beck❤️

#thisiswhatsicklookslike #rsd #crps #arachnoiditis #chronicpain #migraine

This is about pain, medications, and the opioid epidemic. I’ve never done a crossover piece, as in posting on my weekly blog AND on my personal page. I keep the two deliberately separate. But the line has been blurred for the moment, by forces out of my control: a Utah group’s campaign to address their community’s opioid epidemic.

I’ve been paused on this issue for a couple of weeks, trying to formulate an honest response that doesn’t just scream, “Please stop crushing ALL of us – those of us who genuinely need the meds prescribed at the doses prescribed under your “one-size-fits-all-fixer-syndrome” umbrella!”

A friend shared a post about a group in Utah setting up displays – broken picnic tables, a broken bench, a garbage pail with a ridiculously tiny opening, a port-a-potty with a see-through door, a broken basketball hoop – all imprinted with the message, “This probably isn’t your best option. Neither are opioids. Talk to your doctor about effective alternatives.” It’s meant to deter people from using opioids, I get it. Theirs is a community ravaged by addiction, they’re trying to do what they can to help. I respect that they’re trying to make a difference, I truly do. But I loathe the way they went about it.

It was one of their posters that infuriated me more than anything else. A baseball player in the act of catching a ball and the words, “Pain is temporary. Addiction is not. Opt out of opioids.”

Upset isn’t quite enough to describe what I felt. I would love to ask the person who came up with that slogan the following questions:

Do you have arthritis?
Have you been diagnosed with an autoimmune disease?
Have you been diagnosed with Complex Regional Pain Syndrome in your left foot and then your left leg, right foot, right leg, right hand, left hand, back, neck, arms, and face? (See included description of the nightmare that is CRPS). Have you ever felt like you’re missing a layer of skin? And that raw layer feels like it’s sunburned? And someone is holding a lighter to that skin?Have you ever had nagging pain so severe that you wish you could literally rip the limb off and throw it away? That’s CRPS. Have you developed carpal tunnel syndrome? How about cubital tunnel syndrome? Do you get migraines? Have you ever had your back broken and then repaired to remedy a congenital spinal condition AND to avoid permanent nerve damage or even paralysis? All because the vertebrae in your back were so collapsed that your nerves were being crushed, causing you to suddenly lose feeling in your legs and becoming unable to walk? Have you been told after that spine surgery that you now have a condition called arachnoiditis? (And yes, it’s real. See the included description of it).

I have. I have ALL of those things. It’s been 22 years of one thing after another. That’s my full time situation. So no, my pain is not temporary. And I can introduce you to scores of others who would agree with me. People living with some of the same things I mentioned above. People living with other chronic illnesses, wracked with pain. Theirs is not temporary either.

Not all pain is temporary. Some pain is a life sentence.

When people like Jeff Sessions, the former attorney general, make comments like: “People need to take some aspirin and tough it out a little.” Or “I’m not taking any drugs…. but I mean, a lot of people – you can get through these things.”

Those are the comments of a man who’s never experienced what some of us in the chronic pain/illness community deal with daily. Steeped in ignorance and judgement. These comments hurt us more than he knows. Sometimes, an opioid prescription is the only option. I’m sure you’ll forgive me for trusting my doctor more than I trust politicians, pharmaceutical execs, and Jeff Sessions.

While the country most assuredly has a crisis, I’m not denying that. When everyone started rushing in to “fix” the problem by changing state mandates, limiting the number of controlled substances doctors could prescribe, revoking the licenses of many doctors…. it was crazy. Some of those doctors were absolutely over-prescribing without oversight, without careful follow up and planning to help their patients reduce medication intake. But some innocent, decent doctors lost everything. Patients were being unceremoniously dumped from practices because doctors didn’t want to deal with the pressure from government agencies. Those patients were caught in the crossfire and left to suffer.

Those patients were made to try and find new doctors to pick up their care where their old ones left off. But it’s made them look as though they were “doctor shopping,” hopping from practice to practice, hoping to get as many prescriptions as possible. This was not the case.

Don’t get me wrong, there are people who do it. But the majority of people trying to cope with everything in their charts are NOT doing that. It’s been a mess.

The other issue I take with that poster, with those displays, is that they seem to imply that someone addicted to opioids can simply “opt out” of needing them. It’s to simple and ridiculous. I’m sure they didn’t mean for it to come off that way, but it does. “Okay, sure! I’ll just switch to Advil. Thank goodness I almost sat on this broken bench!” 🙄

I have no patience for this. I’m lucky to be in NYC, in the same practice I’ve been with for 15+ years. But I have friends who live across the country, where the nearest pain management practice is 3-4 hours away. Where the nearest medical center is almost as far. This isn’t a game. When we lose our doctors, starting over is not a simple thing. Each time I need to see a new specialist and have to go through my 22 year health odyssey, it’s not easy.

My medical chart is like a telephone book, (remember those?). It’s full of blood tests, post op reports, X-rays, MRI’s, and more. As one doctor put it, “your medical record unfortunately speaks for itself, and what it says is very painful. It’s a lot for one person.” And I’m not alone.

This mess has left a vulnerable population of people in the middle of a very volatile mess. One the one side, we have all of the fixers – the people who think they can make the crisis go away with laws, limits, policy changes, and more. On the other side, you have yet another vulnerable group of people, addicted to drugs and struggling to stay afloat. And we’re in the middle, being pain and med-shamed. Ask anyone who takes an opioid prescription if they’ve ever been treated badly in a pharmacy. Trust me, they have. At least once in their medical life. It’s brutal and humiliating. I know because it happened to me, more than once, in the early days of my health crisis.

If you’ve been with me up until this sentence, thank you. Managing pain – the serious illness kind, not the stubbed your toe or paper cut kind – is hard. It’s a full time job. One I never wanted. I should still be working as a registered nurse. But here I sit, trying to advocate for myself and others like me.

It’s too easy to lump everyone together and assume that experiences will be the same, that we can suddenly function well if the rules change. CRPS is a killer. People have died because they couldn’t take the pain they were left with, especially without the proper medication regimen. It’s not a game to us.

Please, please think differently about this crisis. People battling addiction desperately need proper care and long term planning to help them resume healthier lives. It’s not as simple as hanging a poster and thinking everyone will immediately comply.

People battling chronic pain need to be validated, believed, and treated with respect and the right medications. Not belittled by people who have no idea what they’re talking about.

So there, I’ve addressed it. I’ve said (most of) my peace. And all without profanity! It’s a banner day!

Seriously though, thank you for sticking with me and hearing me out. And, by the way, I function extremely well with all of the stuff I mentioned earlier. That’s one of my super powers: ignoring until I can’t, dealing with flares the best I can, and getting on with my life. Most of you will say that you had no idea, that if I hadn’t said anything it would have remained an unknown. I prefer it that way. But with this, too many people are getting hurt by (mostly) well-meaning “fixers” who’ve decided that the best way to deal with the opioid epidemic is to refuse to allow doctors to continue prescribing to anyone – or, at the very least, to make it hard for them to do so. I can’t let that continue without saying anything. The stakes are way too high.

Wishing each of you a safe & calm weekend,

Beck❤️

#thisiswhatsicklookslike #rsd #crps #arachnoiditis #migraine

Sunday, 9/13/20

Today I woke up feeling a lot of pain.
As a person who literally never stops talking (many apologies to my wonderful husband and our gal), I honestly felt pained into silence. As if, the mere act of opening my mouth to have a conversation would shatter me into nothingness.

I got out of bed, trying to walk like someone who’s back/arms/legs weren’t screaming, and started my usual morning routine.
As I was making coffee, I had the epiphany about my silence. I needed the quiet, in order to quiet my own head. Which, as we all know, is virtually impossible. For those in my daily real life: if you think I talk a lot in person, you should bear witness to my inner monologue. It’s way worse. I think. As a chronic talker, I’m probably not the best judge. I think I’d need a non-talker for that. More of an introvert.

I also had another scary realization this week. Remember back in the early days, when I wrote about trying to get from one thing to the next? “If I just do this, I can sit down. If I finish this, I can rest.” I’ve begun to think that way again. But with little variations, and not every day.

It’s something I’m trying to work my way through, without running over the people I love most in the process.

Monday, 9/14 – Tuesday, 9/15

The days passed much like Sunday had. The pain was less, but not by much. Headaches on and off. Worn out. It’s funny how doing so little can tire me out so much. This has also been a “coat your left leg in lidocaine” kind of week.

Wednesday 9/16

I spent most of Wednesday panicked about going into the city to see my GYN on Thursday. She’s the one who’d check the lymph node/lump/mystery weirdness under my right arm. Of course, she’d turned it into a regular checkup. Darn them for knowing that I put all checkups off indefinitely- if I can get away with it.

But I hadn’t been on the train since February 21st, my last in-person pain management appointment. And I did have to look up the exact date, it feels like it’s been forever. But I was in the midst of getting ready for the school musical and had no time for anything else. I miss all of that – show prepping, costuming, sewing for the kids – I can’t begin to tell you how my heart aches for the unknown…. of my future in it. Screw you, covid.

I’ve taken the subway for most of my life, day and night. It’s taken a pandemic to shut all normalcy down and make it seem scary. I contemplated canceling, but what good would it do? I’d have to go in eventually. And I have to see the neurologist soon anyway. He can’t MRA my head on a zoom call. Unfortunately, LOL.

Thursday, 9/17

My appointment was at 9:45. The subway felt normal. Everyone wore a mask, as required by the MTA. Everyone was respectful of each other’s space. It wasn’t scary, thank goodness. I got into Manhattan waaaay too early. Since the office said that each patient had to show up at their exact appointment time, I couldn’t go there. So I walked. I wandered around the area and saw lots of restaurants getting their outdoor seating ready for the day. Lots of places I recognized were now closed for good. It was completely familiar and totally weird at the same time.

I’d been instructed that I had to come on my own, wearing a mask, prepared to have my temperature taken. The waiting room was mostly blocked off to give each available seat the required 6ft in of space on either side. The 20 person seating area now held room for 5 or 6. It wasn’t bad though. I don’t know anyone who wants to be crowded in anywhere right now. (Or ever, for that matter).

My visit went well. The doc could barely feel the node, though it isn’t swollen at the moment. She asked lots of questions like, “did they ever biopsy it? Or do a sonogram?” As I answered “no” to both, she responded with a baffled sounding, “hmmmm….”

She ordered bloodwork and a bunch of tests that I should have “at this age.” I busted out laughing when she said it, I couldn’t help it. I said, “wow, that was my first ‘at my age’ comment.” She looked surprised but realized I wasn’t offended, it’s just cracked me up. I am 47, after all. 😂 (okay, it’s out of my system).

Friday, 9/18

I already got results on the bloodwork (CBC, thyroid, hormones) and they were all normal, thank goodness. Considering the age I am. 😂 (okay, now it really is).

Seriously, it was a stressful week because I worried about my headaches, the tingling in my tongue, and the weird tastes/smells that seem to accompany it. When I got home, my husband asked if I’d mentioned it, but I’d completely forgotten!🤦🏻‍♀️ She wouldn’t have done anything about it anyway, not her specialty. It’s okay, that visit will come soon enough with yet another doctor.

After the appointment, I had the urge to walk. And so I did. From the upper east side to Union Square Park, about 46 blocks – 2.7 miles, to be exact. I don’t know what possessed me, since I haven’t done a huge walk like that since before the pandemic. It felt like freedom. Freedom I’d absolutely pay for once I stopped walking, once I got home.
Actually, it didn’t take that long. By the time I sat down on the train heading home, my entire body was screaming, “what the hell is wrong with you?!?” 😂

But I didn’t care. Freedom felt better. 😉

Make no mistake though, I am feeling it today. It was still worth it. ❤️

Here’s to getting answers – or at least a little bit closer to answers – to the big questions.

Here’s to feeling a little less afraid in the face of the truly scary things.

Peace and painlessness,
Beck❤️

#thisiswhatsicklookslike #rsd #crps #arachnoiditis #migraine #phantosmia

[Warning: in this week’s post, I describe a headache and the panic attack that accompanied it. I wanted to give each of you a chance to avoid reading if it might be a trigger. The last thing I want is to upset any of you. I’m so grateful that you stay with me on this journey]. ❤️

(I know, I know….. the title’s a bit obvious, but it’s all I’ve got this week).

9/2/20

The headache, (one I‘d almost anticipated since I average at least one per month. It’s become cyclical), accompanied by nausea and deep fatigue settled in for two days. It was better than last month. That one lasted three and never let up, despite using all of my usual take-the-edge-off headache tools.

When it starts, it tends to feel like someone is drilling into my head – directly over my left eye. It’s a pounding burn. Then pressure builds throughout my head, focused mostly over the left side of my skull. It’s a lousy feeling that scares and infuriates me.

I take Tylenol and try to use acupressure between my thumb and index finger. I drink coffee, occasionally I’ll drink a coke. Just small amounts. (I can’t really stomach the taste anymore, which is hilarious considering the memory of a two-liter bottles I’d consumed daily for years. That was a long time ago though. A long time and a lot of weight ago). The calmer I stay, the easier it is for me. I say “easier“ but anyone whose ever dealt with a migraine knows that “easy” doesn’t apply.

I woke up the next day with a twinge of pain, but it ebbed.

9/5/20

Saturday started out as most weekends do, quietly. My husband and our gal getting to sleep later than their jobs permit on weekdays. The day carried on as usual.

Then, a little before 4 pm, I started to feel one coming on. But I tried to push it aside and thought it wouldn’t be a big deal. By 4:15, I was nauseous and felt like I’d been hit in the forehead by a hammer. The over-the-eye pounding started. It hit fast.

A sensation crept in – one that can only be described as ice cold, scalding hot lava being poured into my head, just under my skull. It felt like it was moving, trying to push back out. No, claw back out. (PLEASE accept my apologies for this description. I can’t make it any prettier and it’s absolutely disgusting to me, reading it back). The pressure in my head made me start to panic. I haven’t had a panic attack in years. But my heart started pounding & I knew I needed to do something to try and help myself.

Days later and I still don’t know why – but I went into the living room and got down on the floor. Laying on my back. On my way through the apartment, I had a few moments where my left arm and leg felt weak. The sensation of dragging my left leg as I walked stood out, just briefly. I got down on the floor and couldn’t focus on left-sided weakness. Not then anyway. I filed it under “things I can’t care about while I can’t breathe and my head is exploding.” Something to worry about later.

With the weird suspension pillow supporting my head, almost making it feel weightless. Except it didn’t feel weightless. It felt like a separate, moving entity that was trying to remove itself from the rest of my body. I was so sick to my stomach, I thought I’d vomit. Thankfully, that didn’t happen. I couldn’t have handled that on top of the pressure in my head.

Trying to slow my breathing down, I started to stare at the ceiling. Continuing the acupressure on my hands, switching when my fingers got tired. My gal came into the room and paused, asked if I needed anything. Attempting to look normal – or as normal as one can look while managing a panic attack and a migraine – I let her know that I had a headache. That I was resting. (Weirdly…. on the floor….as if she came in every day to find me there. LOL). She offered to help if I needed anything. I reassured her as best I could. I have no idea what I looked like in that moment.

The clawing sensation in my head kept up. To be honest, I wanted to scream. Actually, I wanted to ask if anyone else felt it. How bizarre would that have been?!? “Are you feeling MY headache? Are you tasting the metallic zing that’s constantly on my tongue? Smelling the weird scents that no one else is noticing but me?”

The smells were back. The taste in my mouth was back. The internal screams were loud and I felt myself actually looking around the room for an escape route. Seriously. As if I could outrun the lava in my head. That’s how I knew I was losing control. And that’s when I knew I had to pull it together.
I forced logic back into the equation. I forced myself to breathe, to stop looking around the room for help because nothing could help. At least not in that moment. I also forced myself to calm down because freaking out my family wasn’t going to make anything better.

Logic. There was no lava.

Logic. There was no alien trying to break out of my skull. Or out of my stomach. Or out of my eye socket. Even though it felt like any or all of the above could happen at any moment.

Logic. I was going to get past this moment.
I think I played music. I think I stayed on the floor for a long time. I think that forcing myself to stay grounded to the floor… feeling the carpet… acknowledging the moment for what it was.

It wasn’t a good night. And the next morning, I had what I can only describe as a migraine hangover. Residual pain nipped at my eyes, burning my head. Maybe my CRPS had affected the whole situation more than I realized.

On Wednesday, I had my monthly telehealth appointment with my doc. He asked about the preceding month. I began to explain about the migraines and the weakness. And the panic. He was typing as I spoke. When I told him what had happened, he looked at me – eyes wide – and gently said, “Of course you panicked. Who wouldn’t, feeling what you just described?” Unexpectedly, I felt reassured and validated.

Then he asked when my last head scans had been. I know I’m a complete weirdo for laughing, especially considering the seriousness of the fall, but I reminded him that I’d had an MRI and CT scan when I fell down the stairs and hit the door, headfirst a couple of years ago. He made a face at me and shook his head.

Then he explained that he wants me to see a neurologist about the headaches and the weakness. That it’s time to get an MRA: a magnetic resonance angiogram. The test provides a visual of blood vessels and blood flow.

It could be nerve related, since it’s happened before. It could be the arachnoiditis. It could be my neck. It could be. It could be. It could be.

Bottom line: it shouldn’t be. So it’s good to get a look and be sure nothing’s wrong. (Cue the fear and annoyance).

I have an neuro appointment set up, but there’s a bit of a wait. I can’t really worry about it or change it, so that’s that.

This week has been hard. Actually, the last few weeks have been. Headaches are tiresome. The lingering fatigue and amped up pain makes it all a lot worse.

Logic: I coped.

Logic: I told my doc. He helped me make a plan.

Logic: I helped myself through that awful evening. I’ll likely have to do it again. Knowing that I can makes me feel stronger.

Here’s to logic. Here’s to trusting yourself. Here’s to the other side, especially when you’re sure you’ll never come out on it.

And if you’re still reading, after all of that, here’s to you too. ❤️

Peace and painlessness,

Beck❤️

#thisiswhatsicklookslike #rsd #crps #arachnoiditis #migraine

So, before I talk about things related to the title, I have to mention a few odd sleep-related things. For a few mornings straight, I woke up at exactly 7:28. I’ve done it in the past, but it’s been a while.

Okay, here we go. A truly weird thing happened on Wednesday morning. At 7:28. I sleep with four pillows. One “normal“ pillow, a side-sleeping candy cane shaped one (to help with my cervical spine pain), and a leg pillow (to help with my hip, lower back, and leg pains). At the foot of the bed is a booster pillow to keep the blankets mostly off of my feet. I cannot bear the full weight of even a top sheet. Basically, my side of our bed looks like a giant “As Seen On TV” ad. (See included visual aid, aka my sketch of the week😁).

So I must have been half asleep when I got up. At 7:28. I walked to our bathroom, taking the leg pillow with me. On some level, I guess I knew I had it in my arms. We have a cabinet with drawers in the bathroom. I pulled out one of the lower drawers a little bit, placing it there as if on a shelf. When I turned away from the sink, to leave, I saw the pillow. That’s when I must have woken up for real because I had no idea why it was there. I think I said, “what the?” out loud. 🤣 But I simply carried it back to bed.

Talk about weird. So that happened. And then, about an hour later, my husband was trying to make sure I was awake. He called over to me and I sat up really quickly and told him that I “would wake them up.” He later said that he hadn’t understood anything I was saying. I – after the fact – wasn’t sure who the “them” in that equation was. Especially since the only other person in the apartment is our daughter. Sooooo….. yeah. It was a weird morning.

Out of curiosity, I did a little research into the significance of the number 728. According to a couple of sites, it’s the universe telling me to be more open with those I love. And that I should be more candid. I mean, I’ve admitted that I sleep in an “Are you in pain? Do you have trouble sleeping?” infomercial. Candid? I can do candid. In my sleep, apparently.😂

Another site said that I need to examine what’s causing dysfunction in my life. I don’t know…. it might be the pandemic. Or living with multiple health issues? The chronic pain? Lack of sleep? Who knows? 😂 That was fun.

Back to the main event. The great disconnect.

I wake up almost every day feeling like some of the circuits in my body have become unplugged. I can almost completely feel my neck, back, arms and legs, (“almost” because there’s slight numbness and discomfort), but it’s definitely not full sensation. Like when you check holiday lights and find that 94 of them are bright and working, but then you realize that 6 are out. That’s a simplistic visual, but it works.

It’s hard to fully describe. But imagine waking up and having to gauge what hurts before you move that part. For me, it’s usually my back and arms. Until I walk a bit, then my knees remind me that they’re a generally unhappy pair. (Like Statler and Waldorf from “The Muppet Show,” the curmudgeons who always sit in the balcony, complaining and cracking jokes). Except my knees complain and just crackle.

It’s a lack of sensation that feels strange. It shouldn’t be there. I continually visualize it as multiple too-short plugs that get pulled from their wall sockets, or ones that just don’t get plugged in anymore. I think that’s what’s happened, some of my circuits won’t be able to work again. Some of the little ones that cause seriously annoying numbness, an absence of normalcy throughout my body. I test out my limbs and wait to see how things will be for the day.

But I don’t let it stop me. I have to do my usual things every day or I’d be miserable. And I really do just fine. (Beloved Mom and siblings: I’m really, really FINE. I’m doing everything I always do – walk around, cook, grocery shop, whatever – just with discomfort that I mostly choose to ignore and a scroodled amount of weird sensations in my back, arms, and legs. Basically my “normal.“ But I’m good. I promise. ❤️).

Compared to the past, I operate at around a 2-4 on a daily pain scale. And I LOOOOATHE pain scales. Because my 4 is someone else’s 0, my 3 is someone’s 10. It’s completely subjective and ridiculous to use a generic scale on millions of people who are all feeling pain. But one person’s sensation is not the next person’s. (Wow, I went down a rabbit hole there. Getting out now).

Anyway, I compare my today pain with my 2003 pain. With my could barely walk without a cane pain of those years. By those standards, I’m doing incredibly well! (ugh, still trying to get out).

Anyway, MOVING ON! The last thing I HAVE to talk about is my gratitude for the people in my groups. I received much needed support from my CRPS family this week on two fronts. In the midst of talking about another issue, we exchanged a few messages about this disconnected feeling. And the smelling-things-that-no-one-else-can issue!! Which, by the way, is called phantosmia. Scary name for a really weird thing. It was so simple, but it reminded me that I’m never alone in this bizarre-a-thon. We need and have each other to commiserate with and cry to. I wouldn’t wish any of this on another human being, but having people completely get it, who’ve experienced their own version of it, is priceless. So, thank you to my incredible RSD/CRPS family. You are all amazing. ❤️

If you’re still with me – good grief, what a ramble – thank you! Wishing each of you a safe, calm, low pain, low aggravation Labor Day weekend. Be safe out there. And pleeeeease wear a mask. ☺️

Peace and painlessness,

Beck ❤️

#thisiswhatsicklookslike #rsd #crps #arachnoiditis #washyourhands #wearamask #pleeeeeasewearamask

This week took a bit of a toll on me.
To start, we’re still living in a pandemic. The number of people I’ve seen in my neighborhood without masks genuinely angers me. I was out running a few errands yesterday and couldn’t believe it. It wasn’t just one or two people, it was a LOT of people.

Maybe you disagree with me about the mask issue, that’s your right. But I live in NYC where it’s crowded, busy, and was the epicenter of this mess just a few months ago. I’m going to continue to wear a mask, not only protect to myself but also to protect everyone else. I could say more about it, but I’ll leave it there.

Another great thing about this week – and I say that sarcastically – is that I’m having another “weird smells that no one else is smelling” couple of days. This week? Gasoline. Like as if I filled the tank and got back in the car but can still smell it strongly. Yeah, it’s exactly as bad as it sounds. That kept me up until 5:30 this morning. At first, I thought I was picking up a scent that was blowing in the from the street. It happens when you live in a city. But nope. It’s just me and my weirdness. As a result of only sleeping for a couple of hours, I’m feeling a bit off today. Thats putting it mildly, LOL.

As a mother and a human being, I’m also incredibly stressed about everything that’s happening in America right now. To the point that watching news or any related items actually makes me sick to my stomach.

My gal, being the guru that she tends to be for me, suggested 4-7-8 breathing. She’s mentioned it before, but I needed a refresher. To start, exhale completely. Some sites suggest an exhale with a whooshing sound. Inhale for a count of 4. Hold that breath for 7 seconds. Exhale for a count of 8 seconds. You can also exhale with a whooshing breath. It’s very therapeutic.

Ultimately, you’re helping yourself to focus only on your breathing, on counting. Enabling your mind to pause. It’s incredibly helpful, for me anyway. I’ve been using this technique every day.

She explained it all so calmly. Just listening to her, speaking so maturely and naturally in her effort to bring me comfort – that calmed me!

I encourage all of you to try it. Goodness knows we all have enough to stress about. Maybe not the constant aroma of diesel fuel in your nose., but….. 🙄 (If anyone IS dealing with stuff like that, please let me know).

Reading has helped a lot also. I’m a couple of books further into my “read 50 books before the end of the year” personal goal. My husband suggested that I start a separate book blog. I’m thinking about doing it. It would be a fun thing to focus on.

Speaking of wonderful things my husband does, (please forgive me if you’ve already seen this picture this week. I literally HAVE to share it again. Come on! I’m dealing with gasoline smell!! Cut me some slack on the joy front.😂), he found three of my beloved rock t-shirts that I’d thought were long gone.

After donating a lot of clothing maybe 2 years ago, I thought I’d accidentally thrown them into the bags. Resigning myself to hoping they’d end up with a fan, I moved forward. Anyway, he FOUND them!! They’re not just favorite t-shirts. They’re my original tees from high school. Two Bon Jovi and one Def Leppard.

That’s only part of why this moment is so great. I tried on my Def Leppard shirt and it STILL FITS. I bought in in 1987, just after my 14th birthday. After all of my weight’s ups and downs, it was exciting to be able to wear something that was – is – so important in my life. Something that I wore when I was a freshman in high school!! I’ll take the win. I needed it.

Here’s to finding time to breathe – really breathe. To finding the calm amidst the chaos. To the little joys that mean a whole lot. And to weird smells that GO AWAY (hint hint, universe). Here’s hoping anyway. ❤️

Peace and painlessness,

Beck❤️

#thisiswhatsicklookslike #rsd #crps #arachnoiditis