Author note: I wrote this week’s blog knowing full well that, most of the time, we get the doctors we get. No choices, no chances to seek out competent and kind practitioners. I have encountered both ends of the spectrum. Here’s hoping we do find the good ones, because we DESERVE to. There’s nothing wrong with knowing our worth as human beings and hoping others see it too. ❤️
I’ve made many comments to and asked questions of my pain management doc over the years. He’s gotten used to my weird descriptions (I think) and been willing to mull over medications, procedures, pretty much everything with me.
But, last fall, when he was referring me to a colleague for a visit, I think I truly stumped him.
He’d just finished explaining the why/the who/the where and how valuable this other doctor could be. He was typing as he spoke, filling in my chart. That’s when I asked, “is he nice?” To be honest, I’m not sure what made me do it. He stopped typing, looked over at me with a very serious expression and said, “well….. I’ve never really thought about it.” So, with a small laugh, I asked, “well, if you had to think about it, would you say he’s nice? Or not so much?”
In all of the years that I’ve been dealing with health issues, I have NEVER asked anyone this question. E v e r. I’ve just gone where I was sent, seen who I was sent to see. And some of those practitioners left a LOT to be desired, trust me. I’d never have had the nerve to ask about niceness or kindness. But, at this juncture of my life, I genuinely want to know what I might be facing. Would it have changed my mind about going? No. But at least I’d have an idea about the person. It would give me some advantage.
Anyway, he sat and thought about it for a couple of seconds and said, “Yes…. I think he seems nice.” Then he started to really laugh. “No one has ever asked me if any of my colleagues are nice before. Leave it to you to be the one.” 😂
As instructed, I made the appointment. It wasn’t scheduled for months though, so I put it out of my mind. Then I got a call on a Wednesday to come in the next day.
My gal accompanied me to the city. When I was called in, I asked her to come in with me. It’s something I’d never have done when she was younger, essentially making it a full-time job trying to hide everything from her. But she’s an excellent second pair of ears to back up my memory.
The doctor came in and, before he’d even said a word, I knew he’d be okay. His big smile and rainbow socks said it all. It went well.
The next time I saw my doc, I told him about my visit with his colleague. And said that he can -should anyone ever ask again-say that his colleague is very nice. ☺️
Why does it matter? If you asked any person with CRPS, like myself, if they’d experienced terrible visits with rude/uncaring/downright mean doctors, nurses, nurse practitioners, physical therapists, etc, guaranteed they’d say 100% YES. A thousand times, yes. And it wears a person down.
When you’ve been told that you’re a liar, that there’s no way anyone could be in the kind of pain you’re saying you’re in…. let me tell you, it’s brutal. I’ve been called – to my face – a liar, lazy, a freak. When the person you’ve come to for help clearly doesn’t care, it’s awful. There have been times over the years where I’ve even questioned my sanity. Maybe I’m not as bad off as I thought? Maybe the pain isn’t bad? I was lost. One doctor told me that he thought that I was a “nurse who wants to get out of hard work.” If he only knew how long I’d waited to get the spot on a mother-baby unit. Ignorant, judgmental fool.
That’s the routine song for so many people living with chronic illnesses. Especially chronic pain. And especially if you “don’t look sick.” If you look healthy. I was 25 when I was diagnosed with lupus. And 30 when CRPS stole my nursing career out from under me.
Forgive me if I want to know how nice a person is. No one is laying a hand on me until I get a sense of how they work with patients. If someone roughly handles my arms or my hands, it can ignite a fire flare in those places that could take a long time to calm down.
Niceness matters in medicine, as much as it matters in every other part of life. There are those who’d disagree – saying that as long as someone is qualified, their bedside manner is irrelevant. They’ve never been handled and grabbed right into weeks-long flare. So I take their opinion with a grain of salt.
My doc and I had a good laugh over the randomness of my question. But even he agreed that it does matter. We have a great rapport. After my original doctor left, my current doc took over and I’ve been his patient ever since. I’d have been in a reeeeally bad spot if he wasn’t as nice as he is.
Obviously a doctor’s experience matters.
Being nice does too. 😉
Wishing you safety and health as we navigate these days at home. Please stay home if you’re able. You will be saving the lives of very vulnerable people.
Peace and painlessness,
#thisiswhatsicklookslike #crps #rsd #arachnoiditis
My life, especially the health and professional parts, seems to be on the “lost and found” track. Maybe a lot of people feel that way. I think, more often then not, I’ve found myself wandering through life like someone wearing the wrong eyeglass prescription.
I was in a complete spiral when I started the job where I met my husband. He helped me turn my entire life around, encouraging me to dream bigger and aim higher. Cheering me on when I went to nursing school.
I was in a deep depression when my sister introduced me to the parent of one of her students. We met, hit it off, became best friends, and she even let me help out in her business. She absolutely changed my life for the better. Helping me to be useful and creative, sewing trims on the beautiful dresses she designed. It was a lifeline when I needed one more than ever. The sadness I felt over my lost nursing career constantly plagued me. I was well and truly lost. She gave me a map out and a reason to stop feeling useless.
Working on the shows came at the right time. Back then, I was always up and down, fighting with myself about the amount of pain I was in, about not letting people down, about letting them down, about surviving every day. The act of getting up in the morning was almost impossible some days. I managed it, but those weren’t good years. Lost? I was so far down an emotional hole that I’m lucky I ever got out!
This is life. I’m certain you’ve all had your own “lost and found” moments. I’m positive at least some of us are experiencing them now. Things are so up in the air, it’s hard to picture life after corona. But it’s going to happen. It’s inevitable. We just have to adapt and move forward, the best way we can.
At least some of you (who haven’t seen my social media) must be wondering why I’ve included the picture below. Well, it all started during a FaceTime call with my mom and sisters. I was in last week’s up and down, when we decided to play Disney trivia that weekend. Then, it was suggested that we all dress up. I’d like to say that my enthusiasm for this plan was entirely motivated by a desire to surprise my young nieces. But, the truth is that I was so excited to make something. I was so energized by the chance to be creative that I dropped everything to put my outfit together. My gal and I had so much fun working on it, it changed my entire week. I’m so grateful for the people in my life who help make these moments happen. They “found” me, without even knowing it.
And so, I became the White Rabbit from “Alice in Wonderland” for an afternoon. Our gal was the Mad Hatter. It was amazing. And, in the course of making my headpiece, I found a pair of fabric scissors that I thought I’d left at school! That made my month! 😂
Being lost and found on a regular basis can be exhausting. But it can also be viewed as a reboot. A chance to start again, at the exact right time. Life means change, everything in flux constantly. Even as we navigate the idea of a post-corona life – whatever that is and whenever it comes – don’t forget that things are going to be shaking out for a long while. We can’t expect to have it all figured out right away. It’ll be impossible to do that anyway. We just have to be ready to move forward while not having the full plan laid out for us.
We’ve done that thousands of times. We can definitely do it again. 😉
Wishing each of you a calm and healthy week. And please stay home and safe. ❤️
Peace and painlessness,
#thisiswhatsicklookslike #crps #rsd #arachnoiditis
A few days ago, a friend of mine tagged me to one of those Facebook challenges. I’m sure you’ve all seen them: over a certain number of days, post a picture/song/etc that means something. Well, this one was a challenge to post an album cover/day over the course of 10 days. Albums that influenced your life. You can’t explain why you’re picking those ten particular records, just post and move on.
So, I’m thinking about my ten choices and some obvious ones clearly made the cut. But then I started to analyze a couple of them. One stands out. One Direction’s “Made In The A.M.”
You’re probably thinking a lot of things right about now. When my husband, gal and I were talking about this and music in general, I was trying to remember when I started listening to One Direction. Then it came to me: it was just prior to my pump breaking. Then it spiraled.
During the worst moments of withdrawal, I pretty much only listened to them. Now, that made us laugh pretty hard the other night because the conversation went something like this:
“When did I start listening to them? (Long pause) I know! When I was in withdrawal!”
Maybe it wouldn’t make you laugh, but the three of us got a kick out of it. Something completely ludicrous in a terrible situation.
Although a lot of the details are fuzzy or completely lost, some are crystal clear.
-Sitting in the office on the upper west side, waiting for the medtronic rep. My doctor and I making small talk, thinking that the device would be fine.
-Back a couple of days later, again waiting for the rep. My doctor telling me that they needed to shut the device off for good.
-Leaving after that visit, completely panicked that I would die. It wasn’t rational, nothing was rational in that moment. I’d been without consistent morphine for more than two days, my body was on fire. I was convinced I wouldn’t make it home.
-Standing in a Starbucks near the office, trying to calm down & settle my scattered thoughts. Unsuccessfully.
-Crying and nearly collapsing into the street when the nicest cab driver in the world pulled up and helped me inside.
-Moments of the drive home, along the west side of Manhattan, past the Freedom Tower. The cab was a large suv. I had my head back so I could see through the huge sunroof.
-Lying in bed, my husband standing at my side. He was talking to my doctor and I was in and out. I kept falling asleep. My pain was out of control and everything seemed off kilter.
-I kept thinking smells were different. That my pillow had a weird scent, that the air was different. My husband had to keep smell checking everything for me. He tried to reassure me, saying that everything smelled normal. Clean laundry, etc.
-Taste was different. I couldn’t taste COFFEE, of all things. What a nightmare.
-Through it all, I listened to One Direction. How bizarre! Made all the weirder by the fact that our gal NEVER listened to them. Maybe the students I was working with at the time played their music for me. That’s the most likely scenario.
I know I got through all of that because of a couple of factors. First and foremost, my husband. Words are inadequate to convey how grateful I am for him, every day of my life. And our gal. They’re the earth, moon, and sun to me.
Second, I was already taking methadone as a part of my regular routine. I was on it for years when all of this pump mess started. Not long ago, I was trying to figure out when my docs started me on it. I’m thinking it was when they discontinued Percocet to start the intrathecal morphine. Percocet was helpful but tricky. I literally knew, without ever looking at a clock, when I was supposed to take all of my medications. The peaks and valleys (ups and downs) of it were always very hard to deal with. But it helped take the edge off of my RSD burning pain. And at the lowest dose possible because I’m so sensitive to high doses of everything.
Third, the unlikely combination of the above factors within the music of One Direction. I found it oddly comforting. Talk about disordered thinking. Someday, I hope to understand why. It really doesn’t matter though. I still occasionally play the few songs I like in a playlist.
A few birthdays ago, my mom, sisters, nieces and our gal were in a local, favorite restaurant celebrating. “Best Song Ever” came on and I immediately started singing out loud. My sister joined in. The bartender yelled out, “YES!” and raised it up. Soon, we were nearly all singing together. It was hilarious and amazing. I may forget a lot, but I will always try to keep that one locked in my brain. It’s one of my favorite memories. Seeing the faces of my daughter and nieces…. absolutely priceless. 😂
This is a wacky time. Let’s make it even weirder by finding music that goes against everything we like. Listen to an artist you’ve never heard of before. Find a genre that pre-pandemic you’d NEVER discover. Make the most of this time and maybe find new music to enjoy.
Wishing each of you more then one direction through this time. (Come on! I literally HAD to 😂). ❤️
Peace and painlessness,
#thisiswhatsicklookslike #crps #rsd #arachnoiditis #onedirection
Okay, it’s day 26. I imagined that – by now – I’d have learned new things, read a book a day, cleaned the apartment six times (HA!), made things better in our weird new environment.
The reading hasn’t gone badly. But I’m a fast reader and started diminishing my “to read” pile very quickly. So, I stopped for a bit. I reeeeeally shouldn’t have done that.
In my break from books, I re-downloaded “Minecraft.” If you’re not familiar with this app, it’s a fun game of building and creating and…..ugh. I only play in creative mode, where you’re not constantly trying to stay alive. My point is that I SHOULD NOT HAVE DONE THAT. I’ve spent a humiliating amount of time working on “my world.” Granted, I’ve done this while occasionally listening to audiobooks, but still. It’s a time-sucking, black hole of app playing. But it’s fun. But ugh. 🤦🏻♀️ (See included ridiculous screenshots).
At the start of the “staying at home,” I also shared the link to taking online classes for free. In my enthusiasm, I registered for two classes. One about the FDA and the other about ancient Egypt. They’re great classes, interesting material and relatively easy to follow along. My mistake? Trying to get through the lessons on days when I haven’t slept. That’s pretty much every day. One afternoon (after a completely sleepless night), I was trying to follow the FDA lecture and everything started to blur. Thinking a change would wake me up, I switched to the other course. The professor started enthusiastically talking about maps and virtual walking tours and …….. When I woke up, I had no idea where I was in the class, or in real life.
It feels like more time has passed. On a normal day, if my husband and daughter were at work, (and if I physically felt up to it), I might take a walk. If our gal was home, we’d walk “the loop.” But it feels like I’m becoming one with my rocking chair.
Being city dwellers, subway takers, and relatively fast walkers – in the good old days of three weeks ago – things are not as they would be. I’ve noticed a huge change in my body. When I know I have to work on a show, I always start slowly. I can walk to the school, which is great. I take my time and give my body the chance to get used to working harder. By March 11th, I was months into working on the school musical. I was constantly walking and moving, I’d hit my stride, I was in a groove. Suddenly stopping was like having the rug pulled out from under me.
I know you’re all feeling the effects of having to stay at home too. Anyone whose body starts at a chronically ill disadvantage has to work harder to get going, to keep going. I feel my body regressing to the way it feels when I’m flaring or when I’m post-flare. Not a good thing. Everyone living with long term health issues will know what I mean. You know how you feel in these moments, how your illness slows you down and keeps you there for an unknown amount of time.
I wish…..and I literally NEVER thought I’d say this, EVER….. I wish I still had an incentive spirometer. For anyone who thinks that sounds familiar but you’re not quite sure what it is? It’s that device they give you when you’re admitted to the hospital to help with your lung capacity (see picture). It’s a way to strengthen your lungs, a way to keep pneumonia from setting in. Being bedridden or mostly immobile decreases your lung capacity. Think of what you’ve been doing day to day. Have you been breathing as deeply or actively as you were before? I know that I haven’t. My respirations are so shallow, it’s harder to take a deep breath at the moment. But I have always hated using them. I’d do it, grudgingly. With multiple admissions over the years, I had a few of them. But I’m pretty sure I threw them out in an act of stupidity. “When will I use this again?” In the year 2020, during a pandemic. But, alas, it is not meant to be. So now I’m just deep breathing throughout the day.
Look at me! I can’t even get the blog up on time! Two days late again. I’m sorry for that. I’m trying to motivate myself to do different things. It was actually lovely yesterday, because my gal and I started our garden project again. Last fall, we planted seeds just to see if anything would grow. It was late in the season, so we didn’t have long to enjoy it. We didn’t care though. It was so much fun to work on.
When she suggested that we start it again, I agreed immediately. In addition to having something new to do, it also makes her so happy. ☺️ We’ll see what happens. In a completely unexpected turn of events, while looking for other supplies, I found a small tin of seeds for a butterfly garden. We didn’t remember having it. But I took it as a sign from someone special that good things abound, even in these crazy times.
It’s perspective. Even as I’m writing this, I feel like my brain is recharging. Will I sleep more? Not likely. Will I reinvent myself? Who knows. Will my apartment get the overhaul it’s needed for twenty years? Noooooooo. But so what?
I needed to find that butterfly garden pack. Desperately. I sincerely hope that each of you finds yours.
We’ll get through this.
Wishing each of you health, calm, and at least one thing that makes you smile every day. ❤️
Peace and painlessness,
#thisiswhatsicklookslike #rsd #crps #arachnoiditis
Last week, I had my first video appointment with my doctor. I’d put off using the telemedicine option, fearing that it would be rushed. But it was actually a good call. Not quite the same, but – under the circumstances – it was okay.
How much has your day to day changed over the last few weeks? Unless I’m working on a show, I usually stay pretty close to home. But, my daughter and I usually take walks. We follow the same route each time – the same loop, as we call it. We see a lot of the same people. We get out of the house and get fresh air for a little while.
I miss that loop.
We’ve all had to adjust a LOT recently. The way we shop, the way we interact with each other. Nothing like this has happened in our lifetime. But here we are, trying to manage in the new normal.
I miss the old normal. I’m pretty sure I took it for granted. Earlier today, I had to pick up my prescription from a local pharmacy. Normally, I’d love the walk. I’d add grocery shopping to the route and maybe get a coffee on my way home. Well, today I only did two out of the three and all while wearing a surgical mask. I’ve never had to do that before. I wish I’d never have to do it again. But my husband reminded me of how crowded the stores have been and that the mask – while not an N95 – would be better than nothing. So I wore it and was glad that I did. I shopped as quickly as I could and made my way back home.
Even seeing people on the street was weird. We’d all give each other a wide berth or cross the street altogether. It’s bizarre seeing such empty city streets. Throw in these odd interactions and the whole thing feels like a sci-fi horror movie.
This is not forever. This is temporary. It might feel like we’re in an indoor version of the movie “Groundhog Day,” but we can get through it. We already are.
Even though we’re lacking person-to-person-IN-person contact, we can still connect online. I’ve been checking in with family and friends. And I’ve trying to keep in touch with my CRPS group members also. These connections are important – no one should feel that they have to navigate any of this on their own.
I don’t know about you, but if I don’t get up or move around a lot for days at a time, my body starts to feel like it’s in flare mode. Or how I feel after I’ve been sick. It’s not a good feeling. And I don’t want that to be an every day thing. So we’ve been trying to take short walks on quiet streets whenever possible. Or I just walk back and forth, from one end of my apartment to the other. It’s not a huge walk, but it’s still walking!
This is not forever. The loop will be still there. We have to work our way through this – doing our part by staying home, washing our hands, practicing social distancing when we are outside. All of these guidelines will keep us all safe.
We have amazing doctors, nurses, medical professionals, first responders, all of the people making deliveries, food service, sanitation workers, pharmacy and grocery store employees, ALL of the amazing and courageous people still showing up for all of us. I am so grateful.
I hope to never take any of those extraordinary people for granted again. The people, the walking, the loop. 😌
Wishing each of you health, safety, and calm. We’ll see the other side of this! ❤️
Peace and painlessness,
#thisiswhatsicklookslike #crps #rsd #arachnoiditis
When I walked out of school on March 11th, I was in a lot of pain. We’d done our first afternoon show and it went well. I was in the midst of a flare & planned to return on Friday, before our first evening show. I didn’t know that the rest of the shows would be cancelled and that schools would be closed indefinitely.
I think about the way I left my work area – kind of an explosion of chaos – 🤦🏻♀️! Costumes left to air out, one in need of a last refitting, the steamer set up (unplugged, thank goodness). All of the shopping totes (we counted 7 at one point, 😂) that I used to travel between the studio to the auditorium – filled with costumes, fabric, paint, script pages, papers, sewing supplies. Yikes.
A bit like a middle-school-musical-Pompeii, we left everything where we anticipated using it again the next day. If I knew then what I know now, I’d have cleaned up and brought home my favorite sewing kit. So much left undone, unsung, undanced, uncostumed. And it makes me sad, to be honest. But all of that is obviously the least of our problems right now.
Over the last 24 hours, that $&@?! arachnoiditis is acting up something fierce. Yesterday afternoon, I couldn’t get comfortable at all. Since the weather was nice, I suggested a walk. My husband, daughter, and I took a short stroll on the empty streets in our neighborhood. When we did encounter other people, everyone gave each other a wide berth. As someone used to interacting with the folks in my neighborhood, this is weeeeeird for me. A nod. A smile. A “how are you?” Nope, no more. It’s all been replaced by suspicion and fear, with good reason. But still.
So we walked. My back pain and the weakness it sends down my legs only got worse. After we got home, I coated my back and legs with lidocaine. And It’s been the same routine ever since. I’m hoping it let’s up. Perhaps I’d get some sleep then. Probably not, but we can wish!
Maybe someone can describe it better than I can. Sort of an intense numb burn that makes your back and legs feel like excruciating lead. As if someone is pinching the nerves while simultaneously lighting them on fire. Then they release them and the pain shoots down my legs, where it just stays and burns. It’s worse on my left side, for some reason. Because it’s a jerk…. and a bunch of words I won’t write here. But I’m saying them in my head. Screaming them, actually.
Sorry. I got waaaaay caught up in that description. Anyone else with arachnoiditis, does this resonate or does yours feel completely different? I’m curious. Pain is so subjective and we all discuss it differently. That’s what makes those stupid pain charts and their descriptive words so impossible.
Anyway, I got lost on the way here. It’s a bad day, pain wise. But I’m trying to refocus my energy by NOT watching any news (I already know it’s the end of the world, I don’t need it dramatically recapped every ten seconds), reading, listening to music, and playing favorite games on my phone.
This is a very difficult time to stay calm but I have to. Stress and upset do nothing for my pain. It’s bad enough that I can’t go out and walk to favorite local shops like I normally would.
We’re creating new norms. Hopefully, my need to simplify stays strong when this is over. Hopefully this will be over soon. It won’t be, I know, but it’s good to keep hope alive.
I just remembered a point I wanted to make at the start of this post! (Thank goodness!). When I left all of my stuff behind, I took it for granted that I’d be back. That tomorrow was guaranteed. The thing is, nothing is promised. No one knows what’s ahead. We can plan and dream all we want – but we have no control.
So make the most of this moment, this hour, this day. FaceTime or call people to say that they matter, that you love them. Say thank you. Smile!! And then smile again! Play videos of cute puppies and share them with your friends. Listen to someone else. Read a great book. Take time to be quiet. Take a moment to listen to yourself. Be in this moment.
Wherever you’re settled, I hope you’re safe and well. I wish that you have all of the supplies you need. I wish that this was over. In the absence of that, I wish you calm. You’re not alone, even in this time of social distancing.
Here’s to flattening the curve and getting to a good place.
Peace and painlessness,
#thisiswhatsicklookslike #rsdawareness #crps #arachnoiditis
Last night, my husband said something that calmed me down (as he pretty much does every day). He was talking about our “circle of control.” Pretty much all of the stuff going on in the world is out of our hands, outside of the circle we can manage. At some point, we have to take a step back and focus on the things we can actually do something about.
I was trying to find a way to lighten up the daily text chain among members of my family. So I asked everyone to post a smiling selfie. I’d much rather see people smiling than to see yet another scary headline. We’re all fully cognizant of how bad it is out there.
The results made me so happy that I decided to start the same thing online. My feed is full of scary and bad news. Some of my friends and the folks who follow my blog are not as mobile as others. Some are in the same medical boat that I’m in, but the internet is their world window. I’d like to change the view, even if it’s only for a moment. And since it only took me about ten seconds to stop in the street – like a weirdo – and take the included picture, I don’t want any excuses! Please post your own picture and use the hashtag, #smileshakeupthefeed.
Do whatever you need to do to lessen your stress. Last night, I felt like I’d been run over. Then I realized that it was, in large part, because I’d been swept up in the corona current. That can’t go on. I won’t let it. Especially now that my husband and daughter are working from home. I don’t want to sit here being an adjunct of the four horsemen of the apocalypse. Enough already.
While I was working on the school musical every day, my screen time decreased by 15% each week. I was notified on Sunday that it had gone up 29% in just a few days!
So I’m taking control of my time, my news intake, and my feed. Let’s each take a smiling selfie and post it. Or start a text chain with friends and family, add the smiles and make someone’s day better. Guaranteed, you’ll change someone’s hour, you’ll remind your friends that life is going on and will continue to do so. This is a crazy time for all of us. Find the seconds/minutes/hours to boost endorphins and help yourselves feel a bit better. We can do this.
My mood improved greatly when I got my first smiling selfie of the day. I hope it’ll do the same for you. We need more joy, more good. That’s what we CAN control. Everything else is out of our hands. Except hand washing. That is 100% not optional. Come on people!
So here’s to staying healthy, to people doing the right thing for others, to hand washing (why this wasn’t more of a thing, I’ll never understand 😬), and to shaking up the feed. ☺️
Peace and painlessness,
#smileshakeupthefeed #thisiswhatsicklookslike #rsd #crps #rsdawareness #arachnoiditis
Standing in the back of the auditorium on Friday, I was frantic. My team and I were making last minute edits on each character’s costumes. It was chaotic, to say the least.
Suddenly, I heard my name being called, repeatedly. When I looked up, the kids were waving me over to where they stood. The cast was rehearsing the finale of the show.
I watched as months of imagination, ideas, stress, hard work, pain, and frenzy came to life. Beautifully. Magnificently, actually.
It took 30 hours to make one set of six costumes, about 40 hours to make another set of eight. And weeks of painting, sewing, planning, editing, scrapping, ordering – you name it, we had to do it for our cast of 44 students. I had to do it. In those brief moments last Friday, the intense pain I was feeling suddenly ebbed. Even if it was just for a few minutes. I’ll take it.
There’s magic in the “getting it right” moments. There’s incredible power when things line up exactly as you hoped, worked, and promised they would. There’s vindication in it. I love those moments.
My work is appreciated, I know that. And I value every person who ever works on a show. Whether you’re an actor, the choreographer, the director, the lighting specialist, the costumer – whoever you are – you’re making those incredible moments happen.
This isn’t just about putting on a show. In our every day lives, those moments happen. They may not be covered in sequins and dancing under colorful lights, but they happen. And we need those moments.
Too often, we’re bombarded with negative. I know you’ve all heard of a certain virus making the rounds of the world. Politics, job, health, family. We’re inundated with problems & bad news. I don’t want to hear any more. I’m sure I’m not alone.
So watching those kids jumping up and down because every one of us did our job to the best of our abilities made me choke up too.
Are we done? No way. Not even close. But I accept the victories where I can get them. This show has had the biggest pre-production process of any musical I’ve worked on at the school. We did a lot of a lot. The kids worked so hard.
When we go on for the first time on Wednesday, I’ll feel relieved. Then I’ll know we’re on the way to being done, as silly as that might sound. We’re in this mode for the next two weeks. There will be mistakes, upset, things to be edited again, changes that must be made. But I don’t care. It’ll all get done. I accept the victories wherever they are.
I’ll be riding high on that moment from last week. Seeing their happy faces. It’s a balm for all of the hard stuff.
Take the little joys. A seat on the bus. Getting a great cup of coffee. Finding the blouse you thought you lost. Hearing kids laughing. A text from someone when you need connection most. Take it all in.
There’s magic in those moments. When things line up. When you catch the train. When your medication is ready on time. When your doctor doesn’t make you wait hours to be seen. Hearing your boss – or anyone – say, “Thank you.” Getting a good night’s sleep. Getting enough sleep to function well the next day. (Let me know what that’s like😂).
Hold fast to those moments. Breathe them in. Imagine yourself bottling them up to enjoy later.
I know I will. ❤️
Keep a good thought for me this week, and next. And for the kids. We need lots of positive energy to keep things moving well.
Wishing each of you a calm, healthy, low pain week. We deserve it. ❤️
Peace and painlessness,
#thisiswhatsicklookslike #rsdawareness #rsd #crps #arachnoiditis
Note to myself on a really bad night –
Last week was really hard. Okay, it was one of the extreme ones. You always know they’re coming, but it’s occasionally surprising. The surprise being that you never how badly your body will react to these days, but then you get the least desired answer.
And yet, you kept going. You got up every day. You went to school. You worked with your students. You checked off items from the many, many lists you’ve written. (Some never make it home, some you’ll find in random places and ask, “When did I put this here??”).
Why do you do it? Because – at the end of the day – you love it. You hurt for it. But you love it.
So on these really painful nights, remember the following:
- You made it this far.
- You did a couple of things that you never thought you’d do, with positive results.
- Have I mentioned that you made it??
- It’s almost over. The show will be here and gone in a matter of days. The kids will have looked fabulous and all will be right in the world. (You just have to get through the next 7 days).
What did you do differently last week? For one, you bravely decided to try a new med. It’s early days yet, but it’s helped thus far. (More on that in future blogs). For a long time, you didn’t see the benefit of crossing the line between “no way” and “okay.” Why bother? You did plenty of that in the first decade of this journey. But, once in a while, you need to trust. You need to listen to the people closest to you. You need to know that the risk might not work out. But sometimes it’s exactly the risk that needs to be taken.
You released your white-knuckled grip on the things you usually have to do yourself. You delegated! You gave a lot of creative control to the kids on the team. (Have I mentioned that they sew??). They shared a large burden with you and made life a whole lot easier. They have been so eager to take on bigger tasks – some are more ready than others – but that’s what it’s all about. You’ve been extremely lucky this year. Mentoring has been a dream.
Back to the pain for a minute. The past couple of days have been the worst in a long while. Like, unrelenting head to toe burns, aches, spasms. And eight – ten on the pain scale. But the work isn’t finished.
So, you kept going. You got up (slowly) this morning and thought that it would be a bad one. It was, pain wise. But it was good work day. A great one.
And so, you’ll keep going. You’ll keep going because you feel alive when you’re creative. You feel useful, productive, and happy when it all turns out as you imagined. And even when it doesn’t. 😂
That’s why you need to keep imagining. And always, always, always keep going.
Hang in there.
Peace and painlessness,
#thisiswhatsicklookslike #crps #rsd #rsdawareness #arachnoiditis
Last Friday, I had my monthly follow up visit with my doc. A resident – Dr. P – came in first. He was very nice and he actually listened as I explained what’s happening with my legs. I even changed into the very stylish paper shorts, so he could see my knees, the swelling, and color changes my legs often exhibit. The rug burn-sunburn sensation on the outside of my lower legs has been increasing in intensity and duration.
My doc arrived in the middle of the resident’s exam. Doc immediately began to ask me about the show, my schedule, my family. Dr. P listened to our back and forth.
When Doc started to examine my legs and my hands, Dr. P. was asking questions and making notes on the computer. In the end, it was decided that I would increase the dosage of one pill (from a half to a whole tablet), start using a ketamine/lidocaine compound cream (instead of lidocaine only), try a newer remedy (to be discussed at a later date), and try to consider any or all of the following: epidural injections, local steroid injections around my kneecap, and a spinal cord stimulator. Ugh.
Why? Because they don’t know if the CRPS is flaring on its own or if it’s referred pain from my knee issues. Either way, Doc thinks the injections could block the pain pathways. He hopes they would, anyway.
I let them know that literally none of the procedures could even be considered until June. I cannot risk any issues before all of my school and dance company responsibilities have been met. Doc understood. He wished me good luck with my work, said he’d see me in late March/April, and left the room.
Dr. P was still typing in my chart and said, “you’ve been here a long time.” It’s true, I said as much. He asked if I was having any issues getting my pain meds filled. It’s not been an issue lately, thank goodness! I commented that all of the higher ups making decisions about pain management don’t realize how those choices trickle down badly on patients. That’s when he said, “its great when we have established patients, like you, because then there’s no doubt about their motives. We know you and your health history. But it’s really hard when we don’t have that relationship. Especially when it turns out that they’re drug-seeking.”
I get that, I really do. I answered, “But don’t forget that this crackdown forces real patients to go to different practices until they find someone to treat them. Lots of doctors dump people or patients are newly diagnosed and completely lost. There are desperate, real people who’ve been doubted for a long time. It’s a mess all around.” He nodded, then wished me a good afternoon and left.
It was interesting to hear the perspective of someone who’s passing through a pain management rotation and learning daily about the trials of everyone involved.
But this is personal. I’m flaring right now and I need my meds. Having to fight against the system to access my meds is the last thing I want or need to do. No one should have to do that.
I hope Dr. P and his colleagues learn from their time with patients like me. I hope they learn from ALL patients who live with pain that we need our healthcare workers to listen, we need them to believe us, and we need them to respond appropriately.
Here’s to hoping for the best case scenario for all of us.
Peace and painlessness,
#thisiswhatsicklookslike #rsd #crps