Tastes like……

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Be h o l d……

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

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

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

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

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

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

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

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

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

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

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

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

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

Peace and painlessness,

Beck❤️


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

Strands…..

Even thinking about a post dedicated to the craziness that is my hair makes me laugh. Actually, it makes me think of the song “Hair,” from the musical of the same name. And then, I immediately have to play the song “Age of Aquarius/Let The Sun Shine In.” The 5th Dimension’s version is my favorite. It’s a vicious cycle. LOL.

As I danced my way through the last bars of the song, I needed to refocus and get back to the blog. Back to the fact that my hairline has changed. For the better. My hair seems healthier than it’s been in years. I need to rewind a few years, so you can understand my surprise.

In 2017, my hair had grown at least as long as it is now and it was fast becoming too hard to manage. The washing and maintenance of it was hard on my hands and arms. I was prepping for shows, sewing a lot, and my multiple tunnel syndromes were flaring. So, I went to the woman who’s been cutting/coloring my hair for years and had her take three inches off. It was liberating and easier to manage.

One of my students said, “I love it! It’s way better, more flattering…. you know, with your age and all.” Way to compliment and insult me in the same breath, kid. 😂 I had to laugh. She didn’t mean it maliciously. Want to get a brutally honest opinion? Ask a kid. Although I hadn’t asked and never would. I’d just shown up for dress rehearsal.

Anyway. I kept it that short, (just below my chin), for years. Up until the pandemic, actually. There’s no way I’m going to a salon any time soon. I love the one I go to and the amazing people that work there. I’ve been a loyal customer for at least 18 years. (Geez, I literally just realized how long I’ve been going there). But covid has convinced me that excursions unrelated to groceries or medicine are reckless and unnecessary – for me, at least. It just makes more sense right now. Who knows how I’ll feel 6 months from now?

The other reason I was driven to cut my hair in 2017 was because it was falling out. Like, a LOT. Every time I washed it, I panicked. It took very little effort to run my fingers through it and come back with handfuls – and I mean handfuls – of hair. In fact, I asked my husband more than once to check if I had bald spots. It felt like too much was leaving my head. He assured me this was not the case, but I worried.

The biggest tell for me? The part in my hair. However I styled it, it looked like my hair had thinned out to an extreme, and my part was like a giant open area on my scalp. Maybe it wasn’t giant, but it felt like it to me.
Between the lupus, the CRPS, the meds, the pain, the lack of sleep – everything – for two decades, it wasn’t surprising that I experienced issues with my hair. I experienced similar issues with my eyebrows, eyelashes, my skin, and my fingernails since my diagnosis. CRPS does that. It’s less traumatizing though, when you can fake fix it with makeup. When it’s your hair? Not so much. It made sense to keep it trimmed.

My hair was super short after we got married. It was easier, especially in nursing school and then once I had a job. I’d never have it short like that again, though. It’s actually more work! Short hair needs to be styled. You can’t just ignore it. Well, I couldn’t. If I didn’t spend some time on it, I resembled Eraserhead. It wasn’t good. At least now I can throw it into a bun or a ponytail and hope for the best. 😂

I’ve watched my hair change over the last year. It’s almost a year to the day since my last haircut and color. I’ve watched it grow in, watched the gray gradually streak through. Seeing the gray doesn’t bother me. I’m actually liking it.

But, back to my point. My part isn’t the same. It’s fuller. The hair isn’t thinned out anymore. It’s also not falling out in a scary way. That’s when it really hit home: how bad of a place I was in, this time last year.

I’ve alluded to being stressed and unhappy in my projects, as much as I loved what I was doing. But, physically and emotionally, I was a mess. And it was clearly having a detrimental effect on my hair. I thought it was just the way things were going to be, not that things were so bad that my hair was literally falling out. There are pictures from that time that I hate, purely because of how dramatic the loss appears. But I can’t delete them from my phone because my family is in them. I love the memories. That’s all that matters. It just irks me in a really annoying vain way.

Back to my epiphany. I’ve always believed I understood how stress, pain, lack of sleep, etc. truly affected me. But that just goes to show how little I understood the hole I was in. I tend to operate like a horse wearing blinders. I see what’s in front of me: generally focusing on the amount of pain I’m in, if I need extra meds, pillows, or whatever. I resigned myself to believing hair thinning/loss was entirely a CRPS thing. Apparently, it wasn’t.

My CRPS hasn’t changed or gone anywhere. (Nor will it, the jerk). But the stress, guilt, and uncertainty about my creative choices are all gone. Once I was grounded at home with no shows to plan, costumes to sew, or kids to manage? Big changes. Magically, my hair has started to get healthier. If only everything worked that way.

It’s not magic. But this forced break has given my body a chance to regroup. Don’t get me wrong: I’d give anything to be in the dance studio and on that stage, planning ensembles with the kids. Creating costumes for the professional dance company I work with. It would make me so happy to be able to do that. Unfortunately, it’s not up to me. Maybe I needed that jolt of reality, that shove out the door, to make me stop going along as I was. I felt like a zombie and was starting to look like one.

Physically, some of the usual suspects aren’t as prevalent. The tunnel syndromes, as an example. I haven’t been hand sewing anything, so I’m not aggravating those nerves to the extent that I usually would. I love creating things. Being a maker is one of my favorite favorites. I’ve recently started dabbling in a few little crafts that make me happy, without any pressure. And – to be clear – most of my stress was self-inflicted. I’m an Olympic level, control freak, perfectionist when it comes to my costumes. If I envision something a certain way, that’s how I’m doing it. Needless to say, I amplify everything waaay worse than anyone else can. Loading worry on worry is a specialty of mine. One I’m not proud of.

I’ve said in previous posts that I was desperate to step back, (as much as it genuinely pains me to write that). But I’d never intentionally let anyone down or miss the chance to be a part of an incredible show. Feeling useful? Bringing my ideas to life? Knowing that my costumes are enhancing the stories others want to tell? That’s an incredible rush, a joy unlike any other for me. And I’ve had an incredible run, so far. I’m not out of the game, it’ll just be different for a while. But I have to know my own limits.

Back then, I clearly didn’t. And I’m not sure I wouldn’t wind up the exact same way if I was back at it tomorrow. But, with this much time off, I’d like to believe I’d read myself better. Respect myself more. Trust my gut more. Acknowledge any red flags as my body’s way of protecting me from my own nonsense.

But, for now at least, I’m (mostly 😉) enjoying the downtime, reading like a fiend, trusting that the universe knows what I need personally, and allowing myself to listen. (I may be listening more, but that doesn’t mean I’m not occasionally ignoring as well, LOL). I’m also glad that my hair has decided that I’m worth sticking around for. 😂

May the week ahead be calm, safe, and painless. Or as close to that as possible.

Peace and painlessness,

Beck ❤️


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

Three random wishes…..

It never fails to amaze me how adaptable human beings are. Take the pandemic as an example. Back in February of 2020, I was out running errands with our gal. We saw two women wearing masks. Then a man wearing one. I remember us looking at each other and being sort of scared. Seeing people wearing masks as they went about their day put us on edge. Would it really come to that? I’m pretty sure I said that it couldn’t come to that. No way. And yet, here we are. Probably a year to the day from when I said that. 🤦🏻‍♀️

The thought hit me that, even in nursing school, the longest stretch I experienced having to wear a surgical mask was during my surgical rotation. I was convinced that I would end up working in the OR. That’s how much I loved it. At least until I started my stint in labor and delivery. That’s when I knew that nothing could shake me out of my desire to work in women’s health.

My favorite anecdote from my time there involved the delivery of triplet girls. I was with their mom when she arrived on the floor and stayed with her for most of the morning. I was supposed to change patients after lunch, but she asked me to stay. My instructor was in the room at the time and said she’d okay it, just this once. I was so excited. After a time, the doctor came in and made the call that they’d do a cesarean section.

[Sidebar: I know from having our gal via cesarean section (c/s) that they can happen very quickly. But, being young and inexperienced at the time of this delivery, I had no idea. My instructor was happy that I’d be able to see one firsthand, which was one of my checklist scenarios. Obviously, we had no idea if/when we’d have the opportunity to witness a c/s during our rotation. So when my patient was heading to the OR, my instructor got a few more students in to see it with me. We were all very excited.]

Needless to say, the babies were so precious. Their mom and dad asked each of us what our names were. When I said, “Becky,” they looked at each other, smiled, and said, “Baby B will be Becky.” I couldn’t believe it. We were all crying. That joyful moment further solidified how much I wanted to be there. And it wasn’t all happiness during our time in labor and delivery. But supporting people through what is unquestionably one of their most vulnerable moments is a privilege. One I didn’t take lightly. Then or now. Anyway, that memory popped into my head and I wanted to share it.

That brings me to my first wish. I wish that every healthcare professional remembered the vulnerability of the patients they work with. Most of them are STELLAR. Kind, professional, hardworking nurses, doctors, specialists, and technicians (to name a few) make even the worst experiences better. But there are those who make a bad thing worse for their patients. It doesn’t matter how excited you are to assist with the procedure or that it’s your turn to do the patient intake. It makes no difference if you’re tired or that it’s almost end of shift. They need to always, always remember that there’s a human being attached to that chart. A person with feelings, with fears. Everyone is going through something. Maybe more than one something. But when you sign up to be a healthcare worker, your entire focus needs to be on keeping your patients safe. It means that you need to do your very best to meet their needs, while they’re in your care. I know that from experience.

I’d already been living with SLE for years by the time I was in working on the postpartum unit in the hospital. Plus, I worked evenings and had a toddler at home. There were hard days, painful days. (This was pre-RSD, but only a short time before that all happened). But when I interacted with my 16 patients (moms plus babies), I was present. I was caring. I worked hard to ensure their safety and well-being. And that’s exactly how it was supposed to be. So I wish every healthcare worker could keep that in mind.

Moving on! Yesterday, I woke up at my usual time – after an extremely good night’s sleep, I might add – only to discover that I almost no feeling in my right hand. This wouldn’t be surprising but for the fact that it’s usually my left side (the side I sleep on) that brings the numbness to my life. If I’ve slept with my right arm extended over my head, I definitely expect numbness. But, alas, that wasn’t the case. At least as far as I know. 🤔

So, second wish: to know how the heck I slept that night causing numbness that lasted until after dinner. It was a loooong day, dealing without feeling in my fingers. Silly, but I’d like to know. (Not every wish is earth shattering, LOL). 🕵🏻

This brings me to another point. There’s no rhyme or reason to whether I’ll be having a mostly low pain day or a “this calls for extra meds” day. I’m not talking about when I’ve been working on a show, on my feet for 9 hours straight, carrying costumes, sewing stuff, and managing a group of preteens. I fully expect those days to knock me down. I’m talking about the “we’ve been in a pandemic for nearly a year and the most strenuous thing I’ve done is go downstairs for the mail” days. I wake up and the pain is acute, lasting, and annoying.

Yesterday was rough. I had right sided neck pain that extended down into my back (no idea what’s happening there), both knees, my back, my legs in general, and my hands. I took extra meds and used lidocaine. They helped a bit. But it didn’t make moving around any easier.

It would be nice to know ahead of time, just a simple heads up, whether or not a day will be extra painful. Because, after getting a great amount of sleep, I would have expected to feel pretty good yesterday. My mistake.

So that’s my third wish: to know – before I get out of bed – if my pain will be amplified. Can you imagine? A voice comes from my alarm clock: “Beck, for the next two days, you’ll have a lot of pain in your right knee. But only when you sit down, stand up, or walk.” “Beck, ouch! Your neck is messed up! Prepare the lidocaine, you’re gonna need it.” Ridiculous, I know. But at least I’d be prepared.

And, just so you know, all of these wishes would be made after I wished for the bigger, far more important ones. Curing illnesses, ending the pandemic, helping everyone be financially solvent, etc.

So, there we are. Three random wishes on a Friday afternoon. My pain is about a 3/4. My fatigue is a 10. It’s a good thing I re-read these before they’re posted. At one point, I caught this sentence: “My instructor was happy that I’d be able to see eeeeeeeee one firsthand, which was one of my checklist scenarios.” 😂

Wait! I have a fourth wish! I have to send out my weekly wish for each of you. Here’s to all of you. May the coming week be a safe, calm, low pain one. And hopefully you all know how much I appreciate you coming on this journey with me.

Peace and painlessness,

Beck❤️


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

What a year this week has been…..

It really feels like I haven’t posted in a month. Seriously. I had to look back and prove (to myself) that I actually did post last week. Lack of sleep, pain, a flare, and a migraine from hell will do that, I guess.

Alrighty. What the heck happened this week? The weekend was…. okay, I think, what I remember of it anyway. Most of my days are spent reading. I’m so behind on movies and Netflix shows I like, which is a first for me. I usually binge things the first few days they’re available. Not at the moment, though. I’d rather be reading, which – I think – is a good thing. 📚

Maybe it’s been the cold weather, (snow storm included). Maybe it’s the flare, (the one that won’t reeeeally go away). Who knows? But earlier this week, I was swollen. Puffy fingers/knees/face, the whole nine yards. It wasn’t pretty, but it was painful. That was Saturday/Sunday/Monday/Tuesday. Overnight, Monday into Tuesday, I was wide awake and felt a headache coming. And since most of my nights are a mashup of sleeplessness and running hot & cold, a headache was exactly what I needed. 🤦🏻‍♀️

By the time I’d slept a couple of hours and got up for the day, my head felt like a bowling ball. A sore, puffy bowling ball. I took Tylenol, but it only took the edge off. Things started to improve during the afternoon, which was a relief. I’d been doing the acupressure move (see picture) on my hand that helps headaches and took two small doses of my medical marijuana prescription, one in the morning and then again at around 6pm. But I struggled to eat anything during the day. Migraines sometimes make me nauseous.

Before making dinner, I had to lie down to rest for a few minutes. This, of course, alerted my husband and our gal that I wasn’t feeling 100%. I don’t do that unless I’m really not feeling well. But I just needed a few flat minutes.

Halfway through dinner, I was done. I couldn’t keep my head up without pain. So, I got back into bed and fell asleep by 10. My husband woke me up so I could take my midnight meds, I think I was only awake for maybe 30 minutes. I still can’t believe I fell asleep that early! Then I slept for another 7 hours!! That was the most rest I’ve gotten in MONTHS. Seriously. I felt like complete crap, but getting that much sleep?!? Priceless. The next day, I had residual head pain, but I felt so much better. Sleep is not overrated.

In other news, the shoulder weirdness also made numerous cameo appearances. It comes and goes, just when I forget about it or think it’s a non-event. I mean, come on! Who doesn’t want a migraine and what feels like a possible torn rotator cuff situation? AND a sore underarm lymph node?!? AND have your body imitate the Stay-Puft Marshmallow Man?!? The knees are still being a couple of jerks. My back decided to lock up, just to join in the circus. You know how it is. Why have only one body part malfunction when you can make it a party??
Ugh. I’m whining. Please accept my apology. I’m in a weird mood. It feels like I’ve been caught in a spin cycle of discomfort, exhaustion, and confusion. Every day feels the same because every day is the same.

Despite all of that un-fun stuff, my overall swelling went down a bit yesterday, thank goodness. The new Foo Fighters album is out now (and it’s amazing). And I did not eat the entire bag of mini Twix that’s currently in my kitchen. I’ve only eaten a few. Today. 😬

I don’t know. These days start to blend strangely together if I’m not careful. As a result, I’m going to attempt to shake things up, whenever possible. You might be asking, “How the heck will you do that?” I’m going to try to exercise more, mostly to stretch out my back. The knots in my back have knots that have knots. And my leg muscles won’t help themselves, despite my fervent wishes that they would.

Here’s to sleep, (which I haven’t really much of since that one good night 😴). Here’s to setting goals, (even the unrealistic ones, like me exercising and not eating the rest of the Twix). Here’s to playing it safe, (please wear masks and social distance). And here’s to all of you for sticking with me. Thank you!

There’s only so much this gal can do during a pandemic, so I’m going to try and make the best of a tricky situation. That’s the plan, anyway. We’ll see what’s happened when I meet you here next week.

Wishing you a safe, calm, low pain week.

Peace and painlessness,

Beck❤️


#thisiswhatsicklookslike #rsd #crps #migraine #arachnoiditis #autoimmune #backpain #sacroiliacjoint #facetjoint #medicalmarijuana #foofighters #wearamask #socialdistance #itsnotoverjustcauseyoureoverit

Inward….

Inward….

This week, I wanted to pause and try to pull everyone out of their internal monologues. To try and engage everyone who shows up each week and steps into my inner monologue for a little while. (THANK YOU!!) Bless you all for that. I know I can be a little bit of a lot sometimes, LOL.

Anyway, what the heck am I going on about?!? Allow me to explain.

Last week, I realized that I hadn’t checked in with my CRPS group in what felt like a long while. I’ve been so caught up in my own stuff, big and small, that I forgot to show up in my role as an admin. Completely swept up in my own stuff lately, the nonstop every day quiet. The nonstop, every day hamster wheel we’re all on.

I feel like my medical self has crashed loudly over my day-to-day self – the one who manages our family life, who makes dinner, who loves to laugh with my husband and our gal. They’ve collided repeatedly. Constantly, to be honest. And in the unending sameness and separation from “normalcy,” everything amplifies. Have I ever mentioned how much I loathe the overlap of my medical self and day-to-day self?

You’re all managing your own waves, the unending everything’s that you live with every day. For the folks reading this who live with chronic health issues, I’m sure you can understand or at least empathize with what I’m talking about. Obsessing over this pain, that swelling, etc. But endeavoring to not make a huge production of it. That’s my battle.

It’s easy to forget that we’re all in this mess together. We are. Please forgive the sort of-reference to “High School Musical,” but there’s no other way to say it, LOL. 🤦🏻‍♀️

I don’t want anyone to feel more isolated than we already are. Everyone reading this knows that you can be in a crowded subway car or a full banquet hall and feel alone. It doesn’t take literal aloneness to be alone.

All of this motivated me to check in with my group, to make it a priority every week. And now I’m checking in with you. It’s waaaay too easy to fold inward. It’s more comfortable, convenient even. Let’s try to do something different together.

Check in. Even if it’s just to say, “Hi. I exist.” Leave a comment on this page. Seriously! Just say hello. Let this community here, this painintheBECK family, know what’s happening in your life. You matter. YOU MATTER.

As I watched the inauguration, I heard a song that I’m compelled to include this week. I don’t listen to the radio or seek out new music, but this song brings me so much joy. It makes me smile and reminds me to think differently. To get out of my own head.

No one knows when the pandemic will ease up, when our current conditions will improve. So please don’t think I’m sitting here deluding myself. But if I do nothing else this week, I want to convey a message of hope. This song, “Better Days,” by Ant Clemons featuring Justin Timberlake, has stayed with me. I play it or sing it every day. Now I’m sharing it with all of you. I love this version. I hope you enjoy it as much as I do.

Wishing each of you a calm, safe, low pain week. And, of course, better days.

Peace and painlessness,
Beck❤️

#thisiswhatsicklookslike #rsd #crps #arachnoiditis #backpain #autoimmune #sacroiliacjoint #facetjoint #medicalmarijuana #migraine #betterdays #antclemons #justintimberlake

Beck and the terrible, horrible, no good, very bad weekend……

Whatever I mention in this post, please know that I’m okay! I’m doing my thing and all is well. (As well as can be expected during a pandemic and while living with CRPS and everything else in my chart 😉).

Last weekend was a tricky one. On Friday afternoon, I picked up the medrol pack and got it started. By Friday night, however, something wasn’t right. It felt like I’d been hit with an instant UTI. And I mean flip a switch instant. As someone who’s dealt with waaaaaay more than her fair share of UTI’s and mimicking symptoms due to my CRPS, I knew in my gut that I didn’t actually have one. I could only attribute it to the steroid.

One hard thing about taking them is that you can’t just stop suddenly. They need to be tapered off over a few days. After a miserable, wide awake night, I got up on Saturday and decided to wait a little while longer and see if the symptoms would ebb.

Then, a few hours into my “wait and see,” I cracked. There was no way I could go forward with the meds feeling like this. I was in so much pain and couldn’t take it anymore. But I was bummed out about not completing the full seven days of steroid. My knees really needed it.

After careful consideration, (and asking my sister who’s also an RN), stopping was the right choice for me. I was so uncomfortable and hoping to feel relief once the med was out of my system. Sure enough, I felt 100% better. It took about 12-18 hours, but still. Better is better. The lack of sleep wrecked me, but I was finally getting relief.

Leaving a message for my doc, I explained what happened. That’s when I started to think that I’d been in this situation before. I think it happened the last time I tried to take a medrol pack. This doesn’t bode well for me in the event of future autoimmune flares. Medrol packs saved the day for me many, many times.

Of course, I could be completely wrong and maybe I did have a lightening strike UTI that started with the steroid and ended when I stopped it…..🤔. (Probably not). Who knows?

So, later that night, we were all watching a really bad 90’s action movie. Midway through, I started to feel like my face was getting irritated and super hot. My neck as well. Pausing the film, I went to a mirror and was shocked by the obvious reaction I was having. To what? I have no idea. And yes, I’m including this terrible picture of me because it’s easier to relay the story if you can see the picture. (I’d also like to say that our gal used the unplanned intermission to escape the above mentioned bad movie watching experience. Wise woman. 😂 My husband and I decided to finish it).

I took a Benadryl, mostly because my mouth and throat started to get irritated. Shortly after that, everything calmed down. I have literally no idea what I could have reacted to. But I wonder if it had to do with the steroid, even though it happened hours after my last dose. Again, who knows?!?

It was a rough one. Every once in a while, I’ll get a couple of days that really knock me down. This was one of those experiences.

The week got progressively better. Quality sleep still eludes me. And the left shoulder pain is back. I’m going to include a shoulder pic so I can try to point out where the pain is. (And so you’re not only stuck with my allergic reaction pic).

So that’s where we are. Here’s to problem solving for weird symptoms, pain relief, and the fact that’s it’s Friday. 😁

Peace and painlessness,

Beck❤️


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

And the facets strike again…..

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

I got chills…..

…… 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