My memory being what it is, I have to make a list of talking points before my call with the doc. Since the office recommends “checking in” 15 minutes before the zoom call starts, I use that time to make sure I’ve remembered everything that’s happened since our last appointment. I had eight things to tell him. It started out as three, then I started thinking back. It’s always good when that happens before I hang up.

Anyway, here are the eight things:
1) That freaky shoulder/chest wall pain. I got to tell you before I was able to tell my doc about it. That pain has almost disappeared, just twinges every now and again. Nothing like when it first happened.
2) My left arm. From shoulder to fingertips, I’m having issues. Chills, soreness, numbness, etc. This is especially fun since I’m left handed. Since the additional CRPS diagnosis in my hand, it’s been harder to do normal things like write without pain, carry stuff, etc. I do it because I don’t have another option, I just wish I was ambidextrous! Anyway, my left wrist has that burning “please stop trying to do normal stuff with me” pain. The nagging ache that makes me wish I could unplug it for a while, just so I don’t have to feel it. And then we have my hand. Argh! It’s more of the same.
3) My lower left leg, (did I mention this has been a reeeally left week??). The outer edge of my leg is very tender. It’s not a new thing, not really. But I can’t even cross my right leg over it because the pressure is too much. There’s a patch of broken blood vessels near it, I thought it was because of that. In addition to the CRPS, of course. It may not be. I’m using lidocaine ointment on it almost daily, to try and take the edge off.
4) Mid-back pain. Okay, so this isn’t entirely new. I have issues in my neck. I have issues in my lumbar spine. And I’ve had back pain as far back as middle school. But the pain in my thoracic spine is brutal. I’ve taken to sitting with three cushions on my chair, all hit different parts of my back. But the weirdest addition is the acupressure head cushion that I position in the middle of my back. It’s the only way I can stand to sit down for any length of time. I’m not even sure you should use that kind of pillow for longer periods, but I don’t care. I’m past caring about “should” at this point.
5) My knees. I don’t know if it’s the weather, a flare, arthritis. No idea, but my knees feel swollen and sore. Lidocaine is also sort of helping with the nightly pain of trying to sleep (and failing) with two bad knees. And all of the other stuff.
6) My hands are also puffed up. It’s actually enough that my ring stays in one spot, which is good because I don’t want my wedding ring flying off my finger again. But it’s bad because I don’t want swollen fingers, they hurt. I guess I can include my right wrist here, although I forgot to mention it to him. I’ve got the nagging burn, please disconnect it for five minutes pain there too.
7 & 8) The last two were prescription issues, so I won’t bore you with those details.

He surprised me when he said, “it’s the facet joints.” I sat there like, “wait…what?” He explained that every joint has them. He’s fairly certain that most of my issues at the moment are, in part, due to facet joints. What the actual heck?

Just when I thought I couldn’t hate hearing any medical thing as much as I hate hearing CRPS, RSD, or arachnoiditis, he brings facet joints into the mix. This could be causing the new issues in my arms, legs, and back. So, now what?

And thus began our monthly back and forth about treatment options. He recommends doing a medial branch block. A medial branch block is an injection that numbs the medial branch nerves in the facet joint. It’s diagnostic in that it can be helpful in determining if the facet joint nerves are actually the problem. If you get relief, the doc knows those nerves are involved. What then? Well, he said two more words that I loathe: radiofrequency ablation. Nope, nope, and nope. In that nightmare procedure, they use heat to burn the nerves, interrupting those pain signals for (allegedly) longer term relief. Let me just say that, in my experience, it caused longer term pain. I know there are people who’ve had great success with their procedures. I am not one of them. (Shudder).

He knows that. And he said, “I know you cringe every time I say it, but I have to tell you your options.” Ugh, not that. Anything but that. What else? He’s putting me on a week of steroids, a medrol pack. Hopefully, like in other flares, the steroids will reduce the inflammation in my hands and knees. It usually does the trick.

After all of that, we chatted a bit. I told him I finished my 50 book challenge. He couldn’t believe it. And then I humiliated myself. He caught me off guard and asked what books I’d recommend, since one of his kids recently gave him an Audible subscription. Oh my goodness, I literally couldn’t think of anything. Two of the three books that came to mind were perfectly acceptable. But, in between, I blurted out a horror/paranormal/romance novel that I loved but would never in a hundred years have recommended to my pain management doc. Good grief. It’s a great book and maybe he’ll love it. But, ugh. 😂

Anyway, we joked that we should start a book club. That was after I told him I started a “100 books in 2021 challenge.” I’m a few books in already, so I know I’ll get it done. I started last year’s challenge in April or May, I think. So I missed valuable reading time.

So that’s where we are. Arms are numb burning as I’m typing this but – shocker – I’m going to be posting it EARLY!! Not at 11 pm! That’s a victory! 😂

Wishing each of you a safe, peaceful, low pain week. ❤️

Peace and painlessness,
Beck❤️

#thisiswhatsicklookslike #rsd #crps #arachnoiditis #autoimmune #sacroiliacjoint #backpain #medicalmarijuana #migraine

…… they’re multiplyin’. And I’m losin’ control! 🎶 Okay, okay. I’m sorry. I had to. I literally had to. When the universe throws you a “Grease” reference opportunity, you can’t ignore it. (Maybe that’s just me, LOL). But, to be serious, it’s been a tricky week. It’s been a lidocaine week. A swollen joint week. One where my wedding band wasn’t sliding all over the place and was actually staying put on my puffed up ring finger.

But, back to my title, I have actually been getting chills in my left arm, or really just below my shoulder. I’m attributing it to pinched nerves or something, but I’ll mention it to my doc in a few weeks. It is odd. I can’t quite remember the first time it happened, but it was in the last 6 months or so. Maybe a year? I’m terrible with random symptoms I don’t write about. You’d think I’d be better at keeping track of stuff like this. In most cases, I am careful to write things down. But, since it caught me off guard in the early morning, I just sat for a minute – waiting to see if it would happen again – and then got on with the business of enjoying my coffee. (I need one thing in the morning and that one thing is coffee with half & half/two sugars, not a random medical thing).

As I write this, I feel like my left shoulder is being a weirdo lately anyway. It’s numb-adjacent and prickly. Just uncomfortable. But that’s nothing compared to what happened last weekend. We’d come back from a walk and I was merely taking off my coat when – out of nowhere – I had a severe pain across my left shoulder and, I thought, my collarbone. The left side of my chest wall felt like something had either torn or broken. I could raise my arm, roll my shoulder, and move it around. Just not without pain. It hurt under my arm. All I could think was that I’d done nothing except take my coat off. Within a few days, the pain went away and I have no explanation for it. Lidocaine, the TENS unit, and stretches helped, I guess. Who knows?

Years ago, I experienced pain and a pulled sensation in my left arm. Explaining this to my doc at the time, he examined me and told me that my left arm had dropped out of the socket. The muscles were so weak, that they’d just sort of given up trying to keep my arm in place. Physical therapy helped, but he warned me to be careful. I honestly thought I was experiencing something similar last weekend. But it wasn’t quite the same.

I’ll have to wait and see what my doc says. Regardless, I’m not planning to get any images done right now. Managing chronic medical conditions with covid looming is difficult. Under the best of circumstances, it would be tough. Covid has upended everything, making diagnostic tests and procedures that much harder to complete. Whatever he tells me, I’ll have to file in my “things to do when it’s safer” folder.

In the meantime, the chills will hopefully chill out. It’s unnerving, especially since it happens when I’m snuggled up in warm clothes. I’d look it up, but I don’t really want to know. Not right this minute.

So, the bottom line from this swollen, weak-muscled, weird-medical-conditioned gal is that we’re leaving stuff be, for now.
Here’s to normal! I rarely get to deal with it, but it’s good to hope for it. 😉

Peace and painlessness,

Beck❤️

#thisiswhatsicklookslike #rsd #crps #arachnoiditis #migraine #autoimmune #sacroiliacjoint #backpain #medicalmarijuana

Today is January 1st. A new day. A new start. I’m not big on personal resolutions. In the past, years ago, mine mostly had to do with my weight. When you’re in the midst of constant pain, procedures and surgeries, too much Coca Cola (seriously!), you’re immobile, and – to be honest – depressed, your success rate might not be high. At least mine wasn’t. My resolutions were destined to fail. I should say, my unrealistic ones were. So, I stopped making them. Instead, I focused on taking every day, one at a time. I stopped mandating that in twelve months I’d be (fill in the blank), and started being kinder to myself. If I gained pounds, I didn’t feel like a failure. Not as much as before, anyway.

Moving on, it’s been a very reflective year. I’ve read a lot, tried to listen to outside stories, tried to learn about things of which I know little to nothing. But, more than anything else, I’ve kept hold of my hope. Don’t get me wrong, sometimes my grip was literally by the edge of my fingernails. But I kept it. Despair hits all of us. Oftentimes, just writing about it or talking to my family, friends, and fellow warriors eases that burden a lot.

When I think about how my response has evolved from March 11, 2020, (my last day at school), until now, it’s easy to see how time and perspective can help us adapt and cope. Especially when we don’t have a lot of choice in the matter.

But hope and gratitude stayed at the forefront. For the first responders (members of the NYPD, FDNY, EMT’s), the healthcare and hospital workers who showed up every day, for the grocery store employees, the teachers, the delivery people from the USPS, UPS, FedEx – every one of them kept us moving. Their courage should never be forgotten.

As we carefully step into this new year, I am humble and hopeful. 2020 showed us how much is out of our hands. But it also showed how much we can pull together when things are most desperate.

We don’t know what’s ahead, with or without a pandemic. All we can do is move forward, one day at a time. Think of the big picture: one person’s actions can affect all of us, so let’s try to be good neighbors. Please, please, please wear a mask and social distance. Wash our hands. Stay safe. Remember that this situation is like dropping a stone in a lake. It’s just one stone, but the ripple effect goes on and on and on. We can ALL make a difference.

And, maybe it’s optimistic of me, but I think we need to hold onto hope. If that’s too much of an ask, I will hold on for you. When you’re ready, hold on with me.

Wishing each of us a safe, peaceful, and healthy January and beyond.

Much love and gratitude!

Peace and painlessness,

Beck❤️

#thisiswhatsicklookslike #rsd #crps #arachnoiditis #migraine #autoimmune #backpain #sacroiliacjoint #medicalmarijuana #chronicillness

This time last year, things were very different for all of us. I started to think back to last December and had to examine my year long, extreme metamorphosis. The where I was vs. where I am now, covid issues aside.

It had almost entirely to do with my own energy, the emotional charge that I put out into the world. It involved everything I engaged in, what I was working on, and how I felt physically.

Back in early December, we were in the midst of the winter show. Time was flying by and I was a one woman costume shop. (I was also just a few weeks post slicing my index finger open, so my left hand was still healing and borderline useless). I’ll just say this, it didn’t entirely go well. The show was amazing. The costumes looked fabulous, (if I do say so myself, LOL). I received a lot of wonderful feedback. But, despite all of that, I felt…. done. And I mean done.

I was stressed. My exhaustion was extreme. My pain wasn’t under control. But the worst thing of all? I was angry. The worst part is that I couldn’t tell you why.

It felt like there was a hole in the center of my chest, caving inward and dragging me into myself. My heart would race. It felt awful.

I lashed out at people – some deserved it, more than a few didn’t. But, there I was, creating and raging. Raging and creating. That’s how my days went. Then, I’d come home and vent at my husband and our gal. They certainly didn’t deserve it. They were incredible though, as usual. They listened.

I was done.

But then, Christmas break came. We celebrated with family. I rested and tried to regroup. But my anger was still there. The pain was still there, physical and emotional. The gaping vortex in my chest yawned open again.

Jumping right into the musical when I felt like I was caving in on myself? Not my brightest idea. But I didn’t have a choice. The giant coffee cup in the afternoon? A crutch for me to lean on. Gripping the cup like my life depended on it. Some days, it felt that way. The cup and my clipboard, jammed with lists and scripts and notes. I was a mess. A snappy mess. It became an ongoing joke with the kids, “Does she have coffee?” “Yes.” “Phew!” They knew.

I even blogged about it last December, in “The Fraying.” Fraying! That says it all. I compared my brain to a Jackson Pollack painting. But I plowed ahead, leaving a lot of mess in my wake. Looking back, I felt like everywhere I went, I was bonded to a swirling mass of shadowy clutter.

This time last year, I was 13 pounds heavier. And every bit of it felt like it was destroying my knees. And my spirit. I’ve battled my weight for the last 20 years. For a long time, my CRPS-effected feet, legs, and back, my arthritic knees, various medications, and inactivity kept me from really walking the way I love to. It’s hard to get around when most of your body burns with every step. But I tried. Whenever possible, I walked.

Okay, so now that I’ve stressed all of you out (I apologize), you can sort of see where my head was. And then the unthinkable happened to all of us: covid. Suddenly, nothing mattered but our literal health and well-being. It wasn’t a specter, looming on the horizon of “what if?” It was HERE. It was in our neighborhoods, our jobs, schools.
The choice was made for all of us: it was time to stop. Time to reevaluate everything.

I’m used to choice being taken out of my hands, I’ve lived with chronic health issues for two decades. When that happens, you’re left with choices like this: “you can take the medication with terrible side effects that might help your (fill in the blank symptoms), or you can go curl up in a ball over in the corner. It’s really your decision.” Okay, that’s silly, but kind of accurate.

So many decisions are ripped from our hands as we navigate illness. But with COVID-19? All bets were off. It was drop everything, get home, and stay home. If you have to go out, wear a mask and stay 6ft. away from others. So that’s what we did. What we continue to do.

I’ve done my best to manage our home. Books have been my constant. I’m still trying to finish 50 books. My pain is, most days, something I try hard not focus on. Some days, everyone knows my pain is bad. But, for the most part, I’m doing well. My hair is….longer and graying a bit. No cut or color for me for the foreseeable future. I’m actually good with that. Plus my husband and I have decided that if Peter Jackson ever decides to make another “Lord of the Rings” film, we can be extras. Our hair will make it possible. 😂

My biggest change, however, is the absence of anger. Somewhere along the way, I lost it. I’m not saying I don’t get snappy sometimes. Or angry. But that caving sensation is gone. As are the palpitations and hard to breathe moments. Now, I panic about other things. 😂

Seriously, I don’t really know why I suddenly felt the way I did. Maybe it was simply being overwhelmed. Maybe I reached the point of worrying if I could manage it all solo anymore. If I had it in me to keep going. I don’t know. And, in the end, it doesn’t matter. The one thing I’m certain of is that if I ever get to that point again, I have to stop. The sucking void in my chest should have clued me in.

Stop. Seriously…… stop.

I’ve come to love the concept of meeting people where they are. But I forgot that we sometimes need to meet ourselves where we are too. I didn’t do that. I can already imagine the argument I’d have had with myself, that there simply wasn’t time to pause. Or ask for help. Hindsight is 20/20, as they say. And I not only didn’t pull myself out of the ditch I was in, I pushed myself in to begin with. Does that make sense? It only took a year and a pandemic to see that.

If each of you traces your 2020 journey, you’ll see your own metamorphosis. The big changes and small. It’s been a shocking, painfully hard year for everyone, everywhere. But there have been moments of joy & laughter. Flickers of light when we desperately needed them most.

As we leave this year, I’ll make no grand wishes. I’m still embarrassed about how we were high-fiving our way out of 2019. Ugh. 🤦🏻‍♀️

But I’ll say this: stop. Take a breath. See where you are. If you need help, PLEASE ask for it. PLEASE let people know that you’re not okay. I was too stubborn to do that and it left me in an ugly, bitter place.

I value my energy more now, what I put out into the world. The energy of the people I’m around and the places I’m in. These months have forced me to calm down, to listen to my inner monologue and to shut it down. Not entirely, that would be impossible (you all know I love to talk, even to myself). To be realistic. To make hard, practical choices I never imagined having to make. Planning ahead with and for my family.

Meeting myself where I am.

As I carefully step forward, toward whatever the heck is next, I’m trying to keep focusing on the trip so far. Nothing is ever perfect, but it doesn’t need to be. I’ve morphed from anger to contentment. From 24/7 panic to a sense of calm. From spinning foolishly like a top to moving with gratitude. I’m grateful for the experience, although it was one of the scariest and most painful that I’ve had. Grateful because it was a huge reminder, especially as we see what’s happened since then, that all of the stuff and noise we carry around constantly does not matter. People matter. Kindness matters. Listening matters. Accepting our strengths and limitations matters.

I’ve gone on long enough. If you’ve made it this far into my ramble, thank you.

I’ll see you next year. Much love to – and gratitude for – each of you. ❤️

Peace and painlessness,

Beck ❤️

#thisiswhatsicklookslike #rsd #crps #arachnoiditis #migraine #autoimmune #sacroiliacjoint #backpain

So I had the approval. I had the card. I had the tincture. And, on February 22nd, I’d take it for the first time. A low dose, mostly likely with negligible effect (if any), but still.

I remember staring at the box – then the bottle – as if there was a “drink me” tag on it, a la “Alice in Wonderland.” It felt strange, as if I was tempting fate by even entertaining it. Was I? As it was a mostly CBD – low THC mix, the answer to that was probably “no.” But since I’m a master of freakish medical things? Who knows?

Okay, I took it. I took 0.2cc of the tincture – under my tongue, holding it there for as long as I could. And then I waited. I waited to get shorter. Or taller (I wouldn’t turn that down). Or tired. Or….. nothing? I couldn’t tell if anything really happened that day because I was exhausted from working on the school musical. And from my usual lack of sleep. My pain was already amped up and I’d already taken extra medication. So I slept.

The verdict was unclear. But the next day, I took it again, beginning a regimen of taking it at bedtime. Somewhere over the course of a week, I started sleeping better. The pharmacist had recommended taking it at or close to bedtime, just as a start, to see if it made me sleepy. (Come to think of it, I should start taking it again. My sleep, of late, has been complete garbage). She explained that sleepiness was frequently reported and wanted to warn me not to drive or operate heavy machinery until I knew how it would impact my life. As I do neither, (I don’t even have a license), I reassured her that I’d take it before bed.

The weird thing is, as I’m writing this, I can’t remember taking it that consistently. Looking at my notes: dates, doses, and times, listed on colorful post-it’s hanging on the wall of our kitchen. I realize that the world upended and practically imploded between then and now, but still. I also started to gradually increase the dose.

Up until the last week of March, I took it every night. That’s not surprising, considering how chaotic everything was at the time. I look back to how much we’ve adapted to pandemic life. My gal and I were talking about that earlier today, oddly enough. How panicked and uncertain we were about leaving the house at all, even for necessities. The idea of indefinitely wearing masks was terrifying. Now? It’s just what is. We’ve changed and adapted by choice. We choose to be safe and wear masks, to stay home unless we have to pick up provisions, to social distance. Even from family, even though it’s hard.

That brings me to a book I’ve just finished: The Choice: Embrace the Possible, by Dr. Edith Eva Eger, renowned speaker, writer, psychologist, and Holocaust survivor. The memoir combines her own incredible story of lifelong healing with those of her patients. It’s about how we handle the traumas everyone faces in life: accidents, illness, jobs, family, or something as catastrophic as her experience as a prisoner of war at Auschwitz. She doesn’t grade any one experience over another, just the choices we face in how to live with these events. I’m simplifying it terribly, I know. But we face the choices of what’s next on a daily basis.

For myself, I had to come to terms with a devastating medical diagnosis and the loss of my nursing career in the span of a couple of months. This, after living with constant pain and immobility for months before that. I had to choose to keep going for our gal. I had to get out of bed and care for her while my husband was at work. She was my anchor to reality, to the outside world. There wasn’t time to completely fall apart. Thank goodness for her. She made me move.

Over the years, I’ve made countless choices when it came to my medical life. Doctors, offices, treatments, procedures, prescriptions, increasing doses, stopping them altogether. I’ve accrued 22 years of medical choices, good and bad. But I did what needed to be done when I needed to do it. Or at least what I believed was right.

When it came medical cannibis, I felt lost for a while. Like choosing it somehow made me weak or foolish or desperate. I was – am – none of those things. I’m a person who lives with pain. A highly functional person, but still.

So, like every other choice I’ve made, I researched it. I asked questions. I looked at all sides of the issue. My husband calmed me down and reminded me that I had nothing to lose by seeing the doctor. Nothing to lose by getting approved for the program. Nothing to lose by trying the tincture. And he’d be there to support me, as always. (After a terrifying anaphylactic reaction to a medication when I was on my own, we’ve decided that I’d never try anything new unless he’s home and I tell him. This time was no different).

I took it throughout the summer. In October, I tried a higher concentration of the tincture, which helped take the edge off of the nerve pain in my back and legs.

In November, I made a scheduled, socially distanced visit to the dispensary and talked to the pharmacist about trying a different tincture: their equal blend of CBD & THC. I tried it and was glad to have it a couple of weeks ago, during the flare in my back.

Nothing completely relieves the pain in my body. I accepted that a long time ago. But I don’t accept doing nothing about it. I take my prescriptions every 6 hours, the way I have for two decades. I use lidocaine on my back and legs, whenever I need to. And now I have another weapon to fight my pain. I choose the tincture because it helps. It takes the edge off. You’d be surprised how much even a millimeter of relief means. I’ll take every millimeter I can get.

I’m glad I released myself from a cycle I perpetuate: one in which I agree to think about a medication or procedure, but really just go back and forth with the doctor for months – sometimes years, as was the case of the pump! But by opting out of my usual pattern, I changed course and got some relief. Maybe it wouldn’t have helped at all, but remaining stuck wouldn’t have provided the answers I needed. Something had to give!

I wrote a message to Dr. Eger, thanking her for her words. For reminding me to not lose hope. For helping me to choose hope over fear. Sometimes, it’s easier said than done.
The only thing we completely control in life is our reaction to what happens to us. Whether we hope, despair, try new things, venture on in the face of uncertainty – it’s all is ours to manage.

Thankfully, in this case, it actually helped me. I don’t pretend to be an expert. At all!! But if you’re thinking about trying medical marijuana, I highly recommend speaking to your medical professional about it. Get the answers you need to be able to make an informed decision.

Here’s to the choices we make that work out for us, that enable us to fight another day.

May we have more of those in the future. ❤️

Peace and painlessness,

Beck ❤️

#thisiswhatsicklookslike #rsd #crps #arachnoiditis #migraine #autoimmune #sacroiliacjoint #medicalmarijuana #thechoice #edithevaeger #backpain

I know what I promised for this week. But something wedged itself into my brain and I cannot let it go until I rant a bit. Part 2 will come. But – for now – I have to refocus my words. Please bear with me. I’m not going to be imparting tremendous wisdom, but reiterating some important truths about the journey we’re on.

Last weekend, my husband and I rewatched the “Lord of The Rings” trilogy. It’s a favorite of ours. The series obviously speaks of loyalty and friendship. But it also leans heavily on perception. How everyone sees Frodo and his fellow Hobbits. How they perceive Gandalf, Aragorn, Legolas, and others. Weakness versus strength. Who was capable? Who would be easily destroyed? Who could fight?

And in a completely unrelated space, I finished reading the incredible book, “What Is A Girl Worth,” by Rachel Denhollander. It’s the story of her journey to aid in the takedown of serial predator, Larry Nassar, (the former MSU and USA Gymnastics doctor). She courageously told her story of repeated abuse by Nassar, became the face of a movement, and helped other victims to do the same.

She wrote about how she needed to dress a certain way for her interviews with the press and then in her meetings with police and the lawyers, the way she knew she’d be judged based on how she dressed. Rachel is an attorney, writing about how appearance influences impressions. About the power of perception.

Her story – in turns – broke my heart and made me cheer for every woman and little girl who was able to face their abuser and come out victorious. It’s not an easy book to read, but I recommend it. But the idea of how influenced we are by what we see kept nagging at my brain.

What do we see? Who is a victim? Who is incapable of causing harm? Who looks sick?

Who, who, who?

You might be wondering where the heck I am going here. I am angry. I am enraged for all of the ways that the perceptions of others have the power to hurt. The way they, for example, have the power to leave patients without care. Without medicine. Without a medical practice to lean on and receive care from. This isn’t new, but the ever-present embers on this issue fully reignited for me.

How many of us have been viewed as not looking sick? As in, “But you don’t even look sick!” If I had a dollar for every time I heard that.

What does sick look like? I’ve asked this question before. You know how upset it makes me. The book and the movies reminded me that EVERYTHING we rely on in this world is controlled by perception. Those of others and our own. For this, I’ll stay in the parameters of health.

If I appear to be in pain, will you believe me? If I have a cane, am I more worthy? If I cry? If I’m limping? If, if, if……

I don’t have an answer for this, except that I wish ALL of the medical professionals we meet had the good sense to listen to us, to not base their reports on clothing or whether the patient smiled too much. (They can’t be in that much pain, they seemed fine). In my case, I had my baby daughter in the exam room with me. There was NO way I’d have screamed the way I wanted to with her in the room. No way.

It’s too easy to decide we know someone’s story – that we know better – by looking at them, or even speaking to them for a few minutes. We don’t. We really don’t.

The last thing in my rant is a good thing. As I watched the movies, I thought about all of my fellow RSD/CRPS-ers, all of us living with chronic health issues. And I remembered how grateful I am for all of you. How we can lean on each other, during this incredibly difficult journey we’re on. How you get it.
As an example, one of my friends just had surgery. She messaged me repeatedly to check on ME! She tried to see how I was before telling me how she’s doing.
Despite everything that we have to deal with, I feel lucky to have an incredible group along for the ride. No, we aren’t carrying the one ring to Mordor or the fate of Middle Earth in our hands. But, make no mistake, we battle. We fight hard to name and describe symptoms. We burn and we cry. We hope and we despair. We ache and we find relief, (sometimes). We forge ahead when it seems like there is no way forward. Some of us have lost the fight. But we battle.

I’m rambling. I’m angry and grateful. Im grateful and angry. And, for now, I’m stuck in this holding pattern. Thank you for getting stuck with me, even for a little while.

Peace and painlessness,

Beck ❤️

#thisiswhatsicklookslike #rsd #crps #arachnoiditis #sacroiliacjoint #migraine #autoimmune #lordoftherings #racheldenhollander #whatisagirlworth

[**Disclaimer: In this week’s post, I discuss medical marijuana. However, I am NOT recommending or endorsing it’s use by any other person. As with all medications/treatment options/etc, I leave that up to each of you and your medical providers. This my story, the journey and experiences are my own.**]

About two years ago – during one of my monthly follow up visits with my pain management doc – we were discussing my options. Most of it went along our usual script, but then he threw in something new.
Increased doses? No. New medications at low doses? Maybe…. but probably no. Small procedures? NO. Then he said something about referring me for a medical marijuana consult. I immediately said no. He said, “Think about it.”

In my mind, I didn’t even need to think about it. It wasn’t an option for me. People with no other pain management options deserved that consult. People with other, more extreme health issues. People with intractable pain. People with – wait, I was a person with intractable pain. It might get better some days, but there’s pain every day. I still turned him down, saying that I really did need to think about it.

Fast forward to the fall of 2019. Once again, my doc and I were discussing options. He paused and I asked about getting the referral. He ran through the local practices, (getting a NY state medical marijuana card requires a referral to one of a handful of doctors, certified to approve patients eligible for the program). One of the listed doctors works in the same medical practice. It seemed the most practical, since he wouldn’t need to track down my medical records. Always a plus. This was September. I called to make the appointment and was given a date in January, they also put me on a waitlist.

Two weeks before thanksgiving, I received a call and was asked to come in the next day! Someone had cancelled and I got moved up the list. Excited and terrified, I accepted and planned the trip into the city on my own. Then, I asked my daughter to accompany me. She’d offered early on, when I’d first made the appointment. It didn’t seem like a good parenting move to bring her (she’s practically an adult, but still). But she’s calm and rational, like my husband, and I thought she’d keep me steady.

As we sat on the train, in the waiting room, and in the exam room, I think she sensed my borderline panic. Reminding me that I had nothing to prove to any doctor, that my chart spoke for itself, I felt better. I’m sure you can all relate to the stress and hardship of starting over at new medical offices. For people like me, dragging phone book-sized charts filled with 20+ years of medical weirdness, it can be traumatizing. It’s often invalidating and doesn’t tend to go well. It’s not always like that, but we tend to feel backed into a corner by the very people charged with helping us.

But, on that day, a pleasant man wearing colorful socks entered the room and welcomed us. He asked me to tell him my story, to give him all of the details. Initially, I felt like I was on trial. Then I settled in, remembering that he wasn’t out to get me.

My daughter listened, occasionally smiling her encouragement. After I finished, the doctor examined me. He’d had a chance to read some of my chart and said that my arachnoiditis and chronic pain made me a good candidate for the program. We spoke about varieties of medical marijuana and dispensaries. About the different concentrations. Given my drug sensitivity and previous success with CBD products, he recommended starting with a high CBD-low THC tincture. I’d already made clear that I’m not a smoker, so I’d need another option. That’s when he brought up oral products. Specifically, tinctures that are absorbed under the tongue. Throughout the discussion, my gal took notes. It was a good visit.

Certificate and instructions in hand, we left the office and headed home. I felt relief that it was over, that it went well. But I anticipated never actually making use of it.

A few nights later, I logged into the NYS system and entered my certificate information. I was officially a part of the medical marijuana program.

That was November. It would be another month before I opted to visit a dispensary, once again enlisting my daughter to accompany me. My curiosity about the potential benefits made me go. About the possibility of it helping the pain in my back? There was only one way to find out.

On a very cold day, we took the subway into the city for my appointment. Once again, I was anxious. Once again, our gal was super laid back about all of it.

The office was modern and very clean. I had to show my card at the door. We were called into the pharmacy for my consultation. The pharmacist answered my many questions, she asked me questions, we talked about my options. Then she decided to prescribe exactly as my doc had predicted: a low THC/high CBD formula to be taken via syringe, under my tongue.

It was a very positive experience. One hard part about medical marijuana access and usage is that the laws vary from state to state. Diagnoses aren’t even standardized across all 50 states! One condition might be accepted in NY but not a few miles over in NJ. It’s ridiculous and leaves countless people without potential relief. We need a standard list. Actually, we need to decriminalize marijuana, but that’s my personal take on it.

I brought the tincture home, but it would be February before I convinced myself to try it. And that’s where I need to leave it for today. ❤️

Peace and painlessness,

Beck ❤️

#thisiswhatsicklookslike #rsd #crps #arachnoiditis #migraine #autoimmune #medicalmarijuana #chronicpain

There’s a small window of time each day – an hour or less – when the pain doesn’t quite realize I’m up and about. It’s that little pocket of time when I’ve just gotten out of bed. Remaining flat for even a few hours seems to give my spine the rest it needs. But as soon as I sit down, lean, or bend at all, it’s back. And it lasts all day.

What the heck am I talking about?? Well, that burn I mentioned last week has escalated. A lot.

When I get out of bed/move around/lean in any direction/sit (sitting is the worst of all)/anything that takes me out of alignment, fires up the burn. Worse though, is that all of this triggers pain, numbness, and a liquid lead feeling down my legs. I’ve been reduced to shuffle-waddling around my apartment. The leg drag is back.

I actually wore my TENS unit out of the house, which I’ve never done before, on Thanksgiving day. We went for a short (slow) walk in the local park. I held onto my husband’s and daughter’s arms when the sidewalk became too steep for me (even a tiny incline was tricky). It was nice to be outside, especially since the weather here was mild. But I cannot quiet my inner monologue, the sheer panic over all that I cannot explain or make better for myself. This is hard.

Throughout my medical life, I’ve enjoyed pockets of reprieve. Don’t get me wrong, I was dealing with consistent, daily pain throughout the “reprieves.” But there weren’t any procedures or doctor’s office dramas. Just drama of the every day variety. That’s easier to manage (aka ignore until you can’t).

Clearly, I’ve reached the end of my most recent reprieve. This is not a good time. Whatever is happening in my lower back is now affecting my legs too. Whether it’s a big or small issue makes no difference, it’s already become Yosemite-sized in my head. A Mt. Everest in the place where I store my worry. And now, honored guests, we’ve reached the despair portion of our program. 😂 I added a laughing emoji there because I have to. It’s how I cope.

I’ve reached one conclusion though: I have to get a new image of my spine. It’s likely caused by a pinched millimeter-sized nerve. Or maybe the arachnoiditis has decided to up the stakes. Regardless, I have to know because this situation isn’t sustainable.

I’m used to back pain. I’ve had it since I was a child, maybe as young as 9 or 10. I’m used to it. What I can’t be used to is pain and numbness taking itself out on my legs. That’s not okay. And as much as I’d like to avoid further procedures on my spine, it might not be my choice to make. Just as it wasn’t back in 2009.

So, here I am, propped up in a chair. There are three cushions set up to make the bend less painful. It’s not working, but I can’t avoid sitting. I can’t lie in bed all day. Standing hurts but not as badly. And fast walking? That’s over for the foreseeable future. Regular walking is over at the moment. What a mess! 🤦🏻‍♀️😂

Yesterday was a hard day for me. I tried to write and focus on the blog, but decided that I needed to pay attention to something happier. My husband and I watched a movie and then my daughter and I cooked dinner together. Both of them made my day better.

I’ve got my regular monthly call scheduled with my doc in a couple of weeks. I won’t wait that long though. It’s time to see about an MRI.

I sincerely hope that each of you is safe and well. May the coming week be a calm, low/no pain kind of week. ❤️

(You hear that, spine?!?)

Peace and painlessness,

Beck❤️

#thisiswhatsicklookslike #rsd #crps #arachnoiditis #migraine #sacroiliac #autoimmune #backpain

What is a facet? By definition, it is “one side of something many sided, especially of a cut gem.”

But there’s another facet out there. One that’s given me no shortage of aggravation. Facet joints are “small, cartilage-lined points of contact where each individual backbone (vertebrae) meets the one above and below it. They both enable your spine to flex during movement and also limit its range of motion.”

Why even think about this? The injections seem to have worked. I’m cautiously optimistic about it. If only that was the end of it. 🤦🏻‍♀️

I realized something last weekend. When I bend, even a little bit, I get a low, numbing, burn across my lower back and down my legs. I think it’s come and gone in the past, but I wasn’t able to focus on it. I blamed it on the arachnoiditis. Apparently, that’s not the only potential culprit.

During my Wednesday follow up call with my doc, I mentioned it. He started asking a lot of questions and taking notes. He said, “I think the facet joints are acting up.” I said, “The what joints?”

So, let me catch everyone up here: We’ve got arthritis in my hips. We’ve got a spinal repair (aka hardware) at L5S1. We’ve got sacroiliac joint inflammation. We’ve got arachnoiditis. And a new player: the facet joint!

Seriously? I mean… come on.

But it’s causing burning and the an almost lead-like feeling in my legs, rendering them heavy and draggy. It feels like I’m wearing a lead filled weight belt, like my lower back is filled with numbing, burning lead. And it’s leaking down into my legs. It hurts. It’s pulling all of my focus from everything else I have to focus on. It’s uncomfortable to sit, stand, bend. Things involving my spine scare me. Things involving my spine that involve my legs take me back to 2009. I don’t like it. And saying it all out loud to my doctor and family make it real.

Do you have that? The notion that if you ignore things or keep them to yourself for long enough that they won’t upset your entire life? That they won’t become real in the sense that you’ll have to deal with them? I do. When I say them, I’m saying it because I don’t have another option. I need someone else to know about it. And that terrifies me.

So now what? He recommended some exercises to look up, (I’ve already done that homework!). He wants me to be careful and to call him if the legs become problematic. Or more problematic. Then we move over to the procedures column. I immediately said no. He explained them anyway.

In that list is the nightmare option: radio frequency ablation, aka the one where they burn the nerves. No, no, and a side order of noooooo. Thereare other injections, less scary ones, but I’m not in for that yet. Any of it. I’ll do whatever exercises he wants. He said he might need me to get newer images of my spine. I’ll do that to. But radio frequency ablation? No thanks.

Unlike the doctor who performed it the first time, my doc is very kind. He promised it would involve anesthetic. He also said it could be diagnostic, helping him see exactly where the issues lie.

But I can’t. Not now.

For the moment, I’ll stick with my TENS unit, lidocaine, pain meds, and hope. My fear has the power to undo me. I’m trying to stick with hope.

Here’s to hope. Even if it’s only the size of a pencil eraser. ❤️

Peace and painlessness,

Beck❤️

#thisiswhatsicklookslike #rsd #crps #arachnoiditis #sacroiliacjoint #migraine #autoimmune #facetjoint

I’m not a fancy food person. I don’t eat spicy things, if I can help it. My limited culinary adventures began when I met my husband. He introduced me to more exciting cuisine, though I still always picked the most basic thing on every menu.

You might be wondering why I’d even bring this up? Well, I got to thinking about the burn in my back and trying to find decent adjectives to really describe it. And that was when it hit me: jalapeños and ghost peppers. Imagine liquid jalapeños and ghost peppers, being pumped into your body. Imagine it all flowing to and concentrating on your lower back, occasionally going down your legs or flowing up your spine a bit. Sometimes it’s a five alarm+ situation, the burn so severe you’d definitely be crying and curled up in the fetal position if you were eating it. Sometimes it’s a two alarm. But it’s always there. Always.

I also had a hibachi grill in my head, or a row of pilot lights. It’s hard to make anyone understand how bad it gets. But almost everyone can appreciate the insane burn of jalapeños and ghost peppers, by reputation alone. Please know that while I have accidentally eaten the former, I’ve only heard stories about the intensity of the latter.

So there it is. It’s the closest visual that I can come up with. Today is a two alarm day. I had to run some errands and the walk amped up the burn.

The last week has been uncomfortable. I’ve waited to see how my body would respond to having the injections done. It took about a day for the exhaustion to wear off enough that I’d feel it, but I felt it on Friday. I felt like a zombie that had gotten repeatedly kicked in the back.

And, by the way, I was so tired last Friday that I hardly remember what I wrote in the blog or putting it online. I just know that I did. It was the kind of tired that makes you hurt like you have the flu. The preceding four days of barely any sleep crashed over me and I just went with it. (Like I had a choice, 😂).

Sleeping this week was a little bit better. I guess the whole not having to get through injections or tests made it easier. The only things making it tougher were the migraine that started on Friday and lasted until Monday and the pepper burn in my back.

The pain and pressure in my head got bad enough that, at one point during the night, I started to truly panic. I wanted to scream, although I don’t know how screaming would have helped me. It took me a few minutes to get myself together, to try and focus on the fact that I was okay. That I was really okay.
Today is the first day that I don’t have a constant pinched nerve pain on my left side. I’m cautiously optimistic……

I wish I wasn’t a walking ad for “spices-to-avoid-having-flowing-through-your-nervous-system” though. But we can’t have everything. 😂

I’ll take whatever good I can get from the injections. And keep my TENS unit close and my lidocaine closer.

Wishing each of you a safe, calm, and low pain weekend. That’s what we all deserve. ❤️

Peace and painlessness,

Beck❤️

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