This is about pain, medications, and the opioid epidemic. I’ve never done a crossover piece, as in posting on my weekly blog AND on my personal page. I keep the two deliberately separate. But the line has been blurred for the moment, by forces out of my control: a Utah group’s campaign to address their community’s opioid epidemic.
I’ve been paused on this issue for a couple of weeks, trying to formulate an honest response that doesn’t just scream, “Please stop crushing ALL of us – those of us who genuinely need the meds prescribed at the doses prescribed under your “one-size-fits-all-fixer-syndrome” umbrella!”
A friend shared a post about a group in Utah setting up displays – broken picnic tables, a broken bench, a garbage pail with a ridiculously tiny opening, a port-a-potty with a see-through door, a broken basketball hoop – all imprinted with the message, “This probably isn’t your best option. Neither are opioids. Talk to your doctor about effective alternatives.” It’s meant to deter people from using opioids, I get it. Theirs is a community ravaged by addiction, they’re trying to do what they can to help. I respect that they’re trying to make a difference, I truly do. But I loathe the way they went about it.
It was one of their posters that infuriated me more than anything else. A baseball player in the act of catching a ball and the words, “Pain is temporary. Addiction is not. Opt out of opioids.”
Upset isn’t quite enough to describe what I felt. I would love to ask the person who came up with that slogan the following questions:
Do you have arthritis?
Have you been diagnosed with an autoimmune disease?
Have you been diagnosed with Complex Regional Pain Syndrome in your left foot and then your left leg, right foot, right leg, right hand, left hand, back, neck, arms, and face? (See included description of the nightmare that is CRPS). Have you ever felt like you’re missing a layer of skin? And that raw layer feels like it’s sunburned? And someone is holding a lighter to that skin?Have you ever had nagging pain so severe that you wish you could literally rip the limb off and throw it away? That’s CRPS. Have you developed carpal tunnel syndrome? How about cubital tunnel syndrome? Do you get migraines? Have you ever had your back broken and then repaired to remedy a congenital spinal condition AND to avoid permanent nerve damage or even paralysis? All because the vertebrae in your back were so collapsed that your nerves were being crushed, causing you to suddenly lose feeling in your legs and becoming unable to walk? Have you been told after that spine surgery that you now have a condition called arachnoiditis? (And yes, it’s real. See the included description of it).
I have. I have ALL of those things. It’s been 22 years of one thing after another. That’s my full time situation. So no, my pain is not temporary. And I can introduce you to scores of others who would agree with me. People living with some of the same things I mentioned above. People living with other chronic illnesses, wracked with pain. Theirs is not temporary either.
Not all pain is temporary. Some pain is a life sentence.
When people like Jeff Sessions, the former attorney general, make comments like: “People need to take some aspirin and tough it out a little.” Or “I’m not taking any drugs…. but I mean, a lot of people – you can get through these things.”
Those are the comments of a man who’s never experienced what some of us in the chronic pain/illness community deal with daily. Steeped in ignorance and judgement. These comments hurt us more than he knows. Sometimes, an opioid prescription is the only option. I’m sure you’ll forgive me for trusting my doctor more than I trust politicians, pharmaceutical execs, and Jeff Sessions.
While the country most assuredly has a crisis, I’m not denying that. When everyone started rushing in to “fix” the problem by changing state mandates, limiting the number of controlled substances doctors could prescribe, revoking the licenses of many doctors…. it was crazy. Some of those doctors were absolutely over-prescribing without oversight, without careful follow up and planning to help their patients reduce medication intake. But some innocent, decent doctors lost everything. Patients were being unceremoniously dumped from practices because doctors didn’t want to deal with the pressure from government agencies. Those patients were caught in the crossfire and left to suffer.
Those patients were made to try and find new doctors to pick up their care where their old ones left off. But it’s made them look as though they were “doctor shopping,” hopping from practice to practice, hoping to get as many prescriptions as possible. This was not the case.
Don’t get me wrong, there are people who do it. But the majority of people trying to cope with everything in their charts are NOT doing that. It’s been a mess.
The other issue I take with that poster, with those displays, is that they seem to imply that someone addicted to opioids can simply “opt out” of needing them. It’s to simple and ridiculous. I’m sure they didn’t mean for it to come off that way, but it does. “Okay, sure! I’ll just switch to Advil. Thank goodness I almost sat on this broken bench!” 🙄
I have no patience for this. I’m lucky to be in NYC, in the same practice I’ve been with for 15+ years. But I have friends who live across the country, where the nearest pain management practice is 3-4 hours away. Where the nearest medical center is almost as far. This isn’t a game. When we lose our doctors, starting over is not a simple thing. Each time I need to see a new specialist and have to go through my 22 year health odyssey, it’s not easy.
My medical chart is like a telephone book, (remember those?). It’s full of blood tests, post op reports, X-rays, MRI’s, and more. As one doctor put it, “your medical record unfortunately speaks for itself, and what it says is very painful. It’s a lot for one person.” And I’m not alone.
This mess has left a vulnerable population of people in the middle of a very volatile mess. One the one side, we have all of the fixers – the people who think they can make the crisis go away with laws, limits, policy changes, and more. On the other side, you have yet another vulnerable group of people, addicted to drugs and struggling to stay afloat. And we’re in the middle, being pain and med-shamed. Ask anyone who takes an opioid prescription if they’ve ever been treated badly in a pharmacy. Trust me, they have. At least once in their medical life. It’s brutal and humiliating. I know because it happened to me, more than once, in the early days of my health crisis.
If you’ve been with me up until this sentence, thank you. Managing pain – the serious illness kind, not the stubbed your toe or paper cut kind – is hard. It’s a full time job. One I never wanted. I should still be working as a registered nurse. But here I sit, trying to advocate for myself and others like me.
It’s too easy to lump everyone together and assume that experiences will be the same, that we can suddenly function well if the rules change. CRPS is a killer. People have died because they couldn’t take the pain they were left with, especially without the proper medication regimen. It’s not a game to us.
Please, please think differently about this crisis. People battling addiction desperately need proper care and long term planning to help them resume healthier lives. It’s not as simple as hanging a poster and thinking everyone will immediately comply.
People battling chronic pain need to be validated, believed, and treated with respect and the right medications. Not belittled by people who have no idea what they’re talking about.
So there, I’ve addressed it. I’ve said (most of) my peace. And all without profanity! It’s a banner day!
Seriously though, thank you for sticking with me and hearing me out. And, by the way, I function extremely well with all of the stuff I mentioned earlier. That’s one of my super powers: ignoring until I can’t, dealing with flares the best I can, and getting on with my life. Most of you will say that you had no idea, that if I hadn’t said anything it would have remained an unknown. I prefer it that way. But with this, too many people are getting hurt by (mostly) well-meaning “fixers” who’ve decided that the best way to deal with the opioid epidemic is to refuse to allow doctors to continue prescribing to anyone – or, at the very least, to make it hard for them to do so. I can’t let that continue without saying anything. The stakes are way too high.
Wishing each of you a safe & calm weekend,
#thisiswhatsicklookslike #rsd #crps #arachnoiditis #migraine
Today I woke up feeling a lot of pain.
As a person who literally never stops talking (many apologies to my wonderful husband and our gal), I honestly felt pained into silence. As if, the mere act of opening my mouth to have a conversation would shatter me into nothingness.
I got out of bed, trying to walk like someone who’s back/arms/legs weren’t screaming, and started my usual morning routine.
As I was making coffee, I had the epiphany about my silence. I needed the quiet, in order to quiet my own head. Which, as we all know, is virtually impossible. For those in my daily real life: if you think I talk a lot in person, you should bear witness to my inner monologue. It’s way worse. I think. As a chronic talker, I’m probably not the best judge. I think I’d need a non-talker for that. More of an introvert.
I also had another scary realization this week. Remember back in the early days, when I wrote about trying to get from one thing to the next? “If I just do this, I can sit down. If I finish this, I can rest.” I’ve begun to think that way again. But with little variations, and not every day.
It’s something I’m trying to work my way through, without running over the people I love most in the process.
Monday, 9/14 – Tuesday, 9/15
The days passed much like Sunday had. The pain was less, but not by much. Headaches on and off. Worn out. It’s funny how doing so little can tire me out so much. This has also been a “coat your left leg in lidocaine” kind of week.
I spent most of Wednesday panicked about going into the city to see my GYN on Thursday. She’s the one who’d check the lymph node/lump/mystery weirdness under my right arm. Of course, she’d turned it into a regular checkup. Darn them for knowing that I put all checkups off indefinitely- if I can get away with it.
But I hadn’t been on the train since February 21st, my last in-person pain management appointment. And I did have to look up the exact date, it feels like it’s been forever. But I was in the midst of getting ready for the school musical and had no time for anything else. I miss all of that – show prepping, costuming, sewing for the kids – I can’t begin to tell you how my heart aches for the unknown…. of my future in it. Screw you, covid.
I’ve taken the subway for most of my life, day and night. It’s taken a pandemic to shut all normalcy down and make it seem scary. I contemplated canceling, but what good would it do? I’d have to go in eventually. And I have to see the neurologist soon anyway. He can’t MRA my head on a zoom call. Unfortunately, LOL.
My appointment was at 9:45. The subway felt normal. Everyone wore a mask, as required by the MTA. Everyone was respectful of each other’s space. It wasn’t scary, thank goodness. I got into Manhattan waaaay too early. Since the office said that each patient had to show up at their exact appointment time, I couldn’t go there. So I walked. I wandered around the area and saw lots of restaurants getting their outdoor seating ready for the day. Lots of places I recognized were now closed for good. It was completely familiar and totally weird at the same time.
I’d been instructed that I had to come on my own, wearing a mask, prepared to have my temperature taken. The waiting room was mostly blocked off to give each available seat the required 6ft in of space on either side. The 20 person seating area now held room for 5 or 6. It wasn’t bad though. I don’t know anyone who wants to be crowded in anywhere right now. (Or ever, for that matter).
My visit went well. The doc could barely feel the node, though it isn’t swollen at the moment. She asked lots of questions like, “did they ever biopsy it? Or do a sonogram?” As I answered “no” to both, she responded with a baffled sounding, “hmmmm….”
She ordered bloodwork and a bunch of tests that I should have “at this age.” I busted out laughing when she said it, I couldn’t help it. I said, “wow, that was my first ‘at my age’ comment.” She looked surprised but realized I wasn’t offended, it’s just cracked me up. I am 47, after all. 😂 (okay, it’s out of my system).
I already got results on the bloodwork (CBC, thyroid, hormones) and they were all normal, thank goodness. Considering the age I am. 😂 (okay, now it really is).
Seriously, it was a stressful week because I worried about my headaches, the tingling in my tongue, and the weird tastes/smells that seem to accompany it. When I got home, my husband asked if I’d mentioned it, but I’d completely forgotten!🤦🏻♀️ She wouldn’t have done anything about it anyway, not her specialty. It’s okay, that visit will come soon enough with yet another doctor.
After the appointment, I had the urge to walk. And so I did. From the upper east side to Union Square Park, about 46 blocks – 2.7 miles, to be exact. I don’t know what possessed me, since I haven’t done a huge walk like that since before the pandemic. It felt like freedom. Freedom I’d absolutely pay for once I stopped walking, once I got home.
Actually, it didn’t take that long. By the time I sat down on the train heading home, my entire body was screaming, “what the hell is wrong with you?!?” 😂
But I didn’t care. Freedom felt better. 😉
Make no mistake though, I am feeling it today. It was still worth it. ❤️
Here’s to getting answers – or at least a little bit closer to answers – to the big questions.
Here’s to feeling a little less afraid in the face of the truly scary things.
Peace and painlessness,
#thisiswhatsicklookslike #rsd #crps #arachnoiditis #migraine #phantosmia
[Warning: in this week’s post, I describe a headache and the panic attack that accompanied it. I wanted to give each of you a chance to avoid reading if it might be a trigger. The last thing I want is to upset any of you. I’m so grateful that you stay with me on this journey]. ❤️
(I know, I know….. the title’s a bit obvious, but it’s all I’ve got this week).
The headache, (one I‘d almost anticipated since I average at least one per month. It’s become cyclical), accompanied by nausea and deep fatigue settled in for two days. It was better than last month. That one lasted three and never let up, despite using all of my usual take-the-edge-off headache tools.
When it starts, it tends to feel like someone is drilling into my head – directly over my left eye. It’s a pounding burn. Then pressure builds throughout my head, focused mostly over the left side of my skull. It’s a lousy feeling that scares and infuriates me.
I take Tylenol and try to use acupressure between my thumb and index finger. I drink coffee, occasionally I’ll drink a coke. Just small amounts. (I can’t really stomach the taste anymore, which is hilarious considering the memory of a two-liter bottles I’d consumed daily for years. That was a long time ago though. A long time and a lot of weight ago). The calmer I stay, the easier it is for me. I say “easier“ but anyone whose ever dealt with a migraine knows that “easy” doesn’t apply.
I woke up the next day with a twinge of pain, but it ebbed.
Saturday started out as most weekends do, quietly. My husband and our gal getting to sleep later than their jobs permit on weekdays. The day carried on as usual.
Then, a little before 4 pm, I started to feel one coming on. But I tried to push it aside and thought it wouldn’t be a big deal. By 4:15, I was nauseous and felt like I’d been hit in the forehead by a hammer. The over-the-eye pounding started. It hit fast.
A sensation crept in – one that can only be described as ice cold, scalding hot lava being poured into my head, just under my skull. It felt like it was moving, trying to push back out. No, claw back out. (PLEASE accept my apologies for this description. I can’t make it any prettier and it’s absolutely disgusting to me, reading it back). The pressure in my head made me start to panic. I haven’t had a panic attack in years. But my heart started pounding & I knew I needed to do something to try and help myself.
Days later and I still don’t know why – but I went into the living room and got down on the floor. Laying on my back. On my way through the apartment, I had a few moments where my left arm and leg felt weak. The sensation of dragging my left leg as I walked stood out, just briefly. I got down on the floor and couldn’t focus on left-sided weakness. Not then anyway. I filed it under “things I can’t care about while I can’t breathe and my head is exploding.” Something to worry about later.
With the weird suspension pillow supporting my head, almost making it feel weightless. Except it didn’t feel weightless. It felt like a separate, moving entity that was trying to remove itself from the rest of my body. I was so sick to my stomach, I thought I’d vomit. Thankfully, that didn’t happen. I couldn’t have handled that on top of the pressure in my head.
Trying to slow my breathing down, I started to stare at the ceiling. Continuing the acupressure on my hands, switching when my fingers got tired. My gal came into the room and paused, asked if I needed anything. Attempting to look normal – or as normal as one can look while managing a panic attack and a migraine – I let her know that I had a headache. That I was resting. (Weirdly…. on the floor….as if she came in every day to find me there. LOL). She offered to help if I needed anything. I reassured her as best I could. I have no idea what I looked like in that moment.
The clawing sensation in my head kept up. To be honest, I wanted to scream. Actually, I wanted to ask if anyone else felt it. How bizarre would that have been?!? “Are you feeling MY headache? Are you tasting the metallic zing that’s constantly on my tongue? Smelling the weird scents that no one else is noticing but me?”
The smells were back. The taste in my mouth was back. The internal screams were loud and I felt myself actually looking around the room for an escape route. Seriously. As if I could outrun the lava in my head. That’s how I knew I was losing control. And that’s when I knew I had to pull it together.
I forced logic back into the equation. I forced myself to breathe, to stop looking around the room for help because nothing could help. At least not in that moment. I also forced myself to calm down because freaking out my family wasn’t going to make anything better.
Logic. There was no lava.
Logic. There was no alien trying to break out of my skull. Or out of my stomach. Or out of my eye socket. Even though it felt like any or all of the above could happen at any moment.
Logic. I was going to get past this moment.
I think I played music. I think I stayed on the floor for a long time. I think that forcing myself to stay grounded to the floor… feeling the carpet… acknowledging the moment for what it was.
It wasn’t a good night. And the next morning, I had what I can only describe as a migraine hangover. Residual pain nipped at my eyes, burning my head. Maybe my CRPS had affected the whole situation more than I realized.
On Wednesday, I had my monthly telehealth appointment with my doc. He asked about the preceding month. I began to explain about the migraines and the weakness. And the panic. He was typing as I spoke. When I told him what had happened, he looked at me – eyes wide – and gently said, “Of course you panicked. Who wouldn’t, feeling what you just described?” Unexpectedly, I felt reassured and validated.
Then he asked when my last head scans had been. I know I’m a complete weirdo for laughing, especially considering the seriousness of the fall, but I reminded him that I’d had an MRI and CT scan when I fell down the stairs and hit the door, headfirst a couple of years ago. He made a face at me and shook his head.
Then he explained that he wants me to see a neurologist about the headaches and the weakness. That it’s time to get an MRA: a magnetic resonance angiogram. The test provides a visual of blood vessels and blood flow.
It could be nerve related, since it’s happened before. It could be the arachnoiditis. It could be my neck. It could be. It could be. It could be.
Bottom line: it shouldn’t be. So it’s good to get a look and be sure nothing’s wrong. (Cue the fear and annoyance).
I have an neuro appointment set up, but there’s a bit of a wait. I can’t really worry about it or change it, so that’s that.
This week has been hard. Actually, the last few weeks have been. Headaches are tiresome. The lingering fatigue and amped up pain makes it all a lot worse.
Logic: I coped.
Logic: I told my doc. He helped me make a plan.
Logic: I helped myself through that awful evening. I’ll likely have to do it again. Knowing that I can makes me feel stronger.
Here’s to logic. Here’s to trusting yourself. Here’s to the other side, especially when you’re sure you’ll never come out on it.
And if you’re still reading, after all of that, here’s to you too. ❤️
Peace and painlessness,
#thisiswhatsicklookslike #rsd #crps #arachnoiditis #migraine
So, before I talk about things related to the title, I have to mention a few odd sleep-related things. For a few mornings straight, I woke up at exactly 7:28. I’ve done it in the past, but it’s been a while.
Okay, here we go. A truly weird thing happened on Wednesday morning. At 7:28. I sleep with four pillows. One “normal“ pillow, a side-sleeping candy cane shaped one (to help with my cervical spine pain), and a leg pillow (to help with my hip, lower back, and leg pains). At the foot of the bed is a booster pillow to keep the blankets mostly off of my feet. I cannot bear the full weight of even a top sheet. Basically, my side of our bed looks like a giant “As Seen On TV” ad. (See included visual aid, aka my sketch of the week😁).
So I must have been half asleep when I got up. At 7:28. I walked to our bathroom, taking the leg pillow with me. On some level, I guess I knew I had it in my arms. We have a cabinet with drawers in the bathroom. I pulled out one of the lower drawers a little bit, placing it there as if on a shelf. When I turned away from the sink, to leave, I saw the pillow. That’s when I must have woken up for real because I had no idea why it was there. I think I said, “what the?” out loud. 🤣 But I simply carried it back to bed.
Talk about weird. So that happened. And then, about an hour later, my husband was trying to make sure I was awake. He called over to me and I sat up really quickly and told him that I “would wake them up.” He later said that he hadn’t understood anything I was saying. I – after the fact – wasn’t sure who the “them” in that equation was. Especially since the only other person in the apartment is our daughter. Sooooo….. yeah. It was a weird morning.
Out of curiosity, I did a little research into the significance of the number 728. According to a couple of sites, it’s the universe telling me to be more open with those I love. And that I should be more candid. I mean, I’ve admitted that I sleep in an “Are you in pain? Do you have trouble sleeping?” infomercial. Candid? I can do candid. In my sleep, apparently.😂
Another site said that I need to examine what’s causing dysfunction in my life. I don’t know…. it might be the pandemic. Or living with multiple health issues? The chronic pain? Lack of sleep? Who knows? 😂 That was fun.
Back to the main event. The great disconnect.
I wake up almost every day feeling like some of the circuits in my body have become unplugged. I can almost completely feel my neck, back, arms and legs, (“almost” because there’s slight numbness and discomfort), but it’s definitely not full sensation. Like when you check holiday lights and find that 94 of them are bright and working, but then you realize that 6 are out. That’s a simplistic visual, but it works.
It’s hard to fully describe. But imagine waking up and having to gauge what hurts before you move that part. For me, it’s usually my back and arms. Until I walk a bit, then my knees remind me that they’re a generally unhappy pair. (Like Statler and Waldorf from “The Muppet Show,” the curmudgeons who always sit in the balcony, complaining and cracking jokes). Except my knees complain and just crackle.
It’s a lack of sensation that feels strange. It shouldn’t be there. I continually visualize it as multiple too-short plugs that get pulled from their wall sockets, or ones that just don’t get plugged in anymore. I think that’s what’s happened, some of my circuits won’t be able to work again. Some of the little ones that cause seriously annoying numbness, an absence of normalcy throughout my body. I test out my limbs and wait to see how things will be for the day.
But I don’t let it stop me. I have to do my usual things every day or I’d be miserable. And I really do just fine. (Beloved Mom and siblings: I’m really, really FINE. I’m doing everything I always do – walk around, cook, grocery shop, whatever – just with discomfort that I mostly choose to ignore and a scroodled amount of weird sensations in my back, arms, and legs. Basically my “normal.“ But I’m good. I promise. ❤️).
Compared to the past, I operate at around a 2-4 on a daily pain scale. And I LOOOOATHE pain scales. Because my 4 is someone else’s 0, my 3 is someone’s 10. It’s completely subjective and ridiculous to use a generic scale on millions of people who are all feeling pain. But one person’s sensation is not the next person’s. (Wow, I went down a rabbit hole there. Getting out now).
Anyway, I compare my today pain with my 2003 pain. With my could barely walk without a cane pain of those years. By those standards, I’m doing incredibly well! (ugh, still trying to get out).
Anyway, MOVING ON! The last thing I HAVE to talk about is my gratitude for the people in my groups. I received much needed support from my CRPS family this week on two fronts. In the midst of talking about another issue, we exchanged a few messages about this disconnected feeling. And the smelling-things-that-no-one-else-can issue!! Which, by the way, is called phantosmia. Scary name for a really weird thing. It was so simple, but it reminded me that I’m never alone in this bizarre-a-thon. We need and have each other to commiserate with and cry to. I wouldn’t wish any of this on another human being, but having people completely get it, who’ve experienced their own version of it, is priceless. So, thank you to my incredible RSD/CRPS family. You are all amazing. ❤️
If you’re still with me – good grief, what a ramble – thank you! Wishing each of you a safe, calm, low pain, low aggravation Labor Day weekend. Be safe out there. And pleeeeease wear a mask. ☺️
Peace and painlessness,
#thisiswhatsicklookslike #rsd #crps #arachnoiditis #washyourhands #wearamask #pleeeeeasewearamask
This week took a bit of a toll on me.
To start, we’re still living in a pandemic. The number of people I’ve seen in my neighborhood without masks genuinely angers me. I was out running a few errands yesterday and couldn’t believe it. It wasn’t just one or two people, it was a LOT of people.
Maybe you disagree with me about the mask issue, that’s your right. But I live in NYC where it’s crowded, busy, and was the epicenter of this mess just a few months ago. I’m going to continue to wear a mask, not only protect to myself but also to protect everyone else. I could say more about it, but I’ll leave it there.
Another great thing about this week – and I say that sarcastically – is that I’m having another “weird smells that no one else is smelling” couple of days. This week? Gasoline. Like as if I filled the tank and got back in the car but can still smell it strongly. Yeah, it’s exactly as bad as it sounds. That kept me up until 5:30 this morning. At first, I thought I was picking up a scent that was blowing in the from the street. It happens when you live in a city. But nope. It’s just me and my weirdness. As a result of only sleeping for a couple of hours, I’m feeling a bit off today. Thats putting it mildly, LOL.
As a mother and a human being, I’m also incredibly stressed about everything that’s happening in America right now. To the point that watching news or any related items actually makes me sick to my stomach.
My gal, being the guru that she tends to be for me, suggested 4-7-8 breathing. She’s mentioned it before, but I needed a refresher. To start, exhale completely. Some sites suggest an exhale with a whooshing sound. Inhale for a count of 4. Hold that breath for 7 seconds. Exhale for a count of 8 seconds. You can also exhale with a whooshing breath. It’s very therapeutic.
Ultimately, you’re helping yourself to focus only on your breathing, on counting. Enabling your mind to pause. It’s incredibly helpful, for me anyway. I’ve been using this technique every day.
She explained it all so calmly. Just listening to her, speaking so maturely and naturally in her effort to bring me comfort – that calmed me!
I encourage all of you to try it. Goodness knows we all have enough to stress about. Maybe not the constant aroma of diesel fuel in your nose., but….. 🙄 (If anyone IS dealing with stuff like that, please let me know).
Reading has helped a lot also. I’m a couple of books further into my “read 50 books before the end of the year” personal goal. My husband suggested that I start a separate book blog. I’m thinking about doing it. It would be a fun thing to focus on.
Speaking of wonderful things my husband does, (please forgive me if you’ve already seen this picture this week. I literally HAVE to share it again. Come on! I’m dealing with gasoline smell!! Cut me some slack on the joy front.😂), he found three of my beloved rock t-shirts that I’d thought were long gone.
After donating a lot of clothing maybe 2 years ago, I thought I’d accidentally thrown them into the bags. Resigning myself to hoping they’d end up with a fan, I moved forward. Anyway, he FOUND them!! They’re not just favorite t-shirts. They’re my original tees from high school. Two Bon Jovi and one Def Leppard.
That’s only part of why this moment is so great. I tried on my Def Leppard shirt and it STILL FITS. I bought in in 1987, just after my 14th birthday. After all of my weight’s ups and downs, it was exciting to be able to wear something that was – is – so important in my life. Something that I wore when I was a freshman in high school!! I’ll take the win. I needed it.
Here’s to finding time to breathe – really breathe. To finding the calm amidst the chaos. To the little joys that mean a whole lot. And to weird smells that GO AWAY (hint hint, universe). Here’s hoping anyway. ❤️
Peace and painlessness,
#thisiswhatsicklookslike #rsd #crps #arachnoiditis
In the last few days, my left foot situation has flared into a “Hey, why not involve the entire lower leg?“ scenario. Not unlike the earliest days of my RSD odyssey.
Those memories are not good ones.
What’s different? What’s changed from then to now (other than everything)?
Well, I’ve learned a lot since those first months. I’ve also got doctors who believe me (always a good thing). My meds are better and regulated (no more, “let’s try this and see if your allergic or sensitive to higher doses.”). I’m no longer a freakish anomaly in the medical community (At least among medical folks who know about RSD/CRPS). Unfortunately, there are a lot of us living with it. There always have been.
This time around, it’s not a heel spur giving me grief. It’s…. well, actually I don’t know what it is. The podiatrist surprised me last year, when he pointed out left and right spurs on my X-rays. My feet have been a mess for so long, but unrelated to any spur issues. I guess I knew that would catch up to me at some point. In any case, the “now” of all of this involves my left ankle, mostly. And a new, painful, nagging burn up the outside & back of my lower leg. This time around I have CBD balm and lidocaine ointment. Those are the only reasons I’ve gotten to sleep on the bad nights, when the spasms kick off.
I’ve been using sensitive skin kinesiology tape for my knees for about a year. (I think it’s been that long. Who knows? Especially since we’ve all been living in a warped version of the movie “Groundhog Day” since March). I looked up a video on how to wrap my heel/ankle with the tape and it’s been okay so far. We’ll see if the adhesive starts to become problematic. 🙄 Come on, we know me. Let’s take bets to see how long it takes! 😂
At least I can laugh. The absurdity of the daily has become so normal, that – if/when things level off – I don’t know what I’ll do with myself. I’ve gotten used to masks and gloves. I’ve gotten used to social distancing. (Truth be told though, my family and I have been training for this for a long time. We’re not really the most social people, beyond family stuff. I’m not a hostess at all. I’m definitely more of a guest. I wouldn’t say I’m antisocial, just a sort of anti-going-out-unless-it’s-to-the-grocery-store-or-pharmacy type of gal). 😂
I don’t know. Now I’ve made myself sound like a total weirdo. As usual.
So then and now. Some things haven’t changed, like the fact that I’m still managing all of this health stuff. I’ve aged with it. Grown up with my RSD. I’d like to say I’m wiser, but I think I just know myself a lot better. I can see myself more clearly. And I think I handle new developments more calmly than I did back then. In 2003, there was so much chaos in my head. I was a mass of noise, most of the time. Is it that so much time has passed? Or is it that I’ve developed better coping skills? Probably both. If there’s a positive to be found in this, I guess that’s it.
And I’ll take it. Here’s to the “then and now’s.” Here’s to lidocaine and meds that work. Here’s to the “socially-distant-anti-social-but-not-really-anti-social“ folks. Here’s to putting our own oxygen masks on first so that we’re better able to handle what’s around us. Here’s to finding ourselves better prepared for the unexpected, even if it’s only marginally better. Even if it means that we can only stay semi-grounded for it. That we’re hanging on by a thread. If that’s the case, don’t forget that you’re still hanging on! That’s something.
Something good. ❤️
Peace and painlessness,
#thisiswhatsicklookslike #rsd #crps #arachnoiditis
My monthly telehealth doctor’s appointment was yesterday afternoon. In order to activate the visit, you need to sign into the hospital’s app, go through a questionnaire, and then wait for the doc to check in. The “waiting room” is a split screen.
Since both my husband and our gal were on Zoom calls at the time, I decided to set up for my call in our kitchen, to keep the noise to a minimum. That was my first mistake.
I set up my tripod and a chair, neither of which is usually in that space. I’d checked in and was watching the split screen and waiting for my doc. My idea of a good setup was my second error.
So the chain of events that followed went something like this: as I waited, I poured myself a cup of seltzer. After that, I adjusted my phone to better see the screen. And then I knocked the seltzer over. That’s when the real fun started. Ugh.
What looked and felt like an OCEAN of soda flooded the floor, under the fridge, all over the table…. everywhere. It was about 16 oz. of liquid that somehow morphed into 100 oz. once it spilled.
I frantically grabbed every nearby drying implement and began cursing and cleaning up the mess.
I was on the floor while trying to dry the dang floor when I heard, “Rebecca? Hello?” And that was the moment that I popped onto the screen like a jack-in-the-box, coming face to face with a resident I didn’t know. Oh good grief. I’m 100% positive that I looked like a lunatic. I couldn’t fully see his expression since he was wearing a surgical mask. That was probably for the best. 😂
Having to switch gears from cleaning up a mess to retelling my pain story to a new person for the millionth time was ridiculous. He clearly didn’t know what to make of me. I generally don’t know what to make of me, most of the time.
After five minutes, my doc appeared in the background and my “this time” weirdness melted into my “usual weirdness” normalcy. My doc never seems surprised by me or anything I say. Crisis averted!
Averted until I had to keep mopping up the seltzer after the call. But whatever.
Anyway. What I ended up telling him was that old pain issues – and I mean OLD – are back.
My left foot, the lovely appendage that started my RSD story, is being a ———. Go ahead and insert any bad word you use. It’s mostly my ankle and heel and it’s ANNOYING.
A few nights after last month’s call, I had a bout of spasms in my feet. It’s sort of a restless leg syndrome/RSD situation that I get in my legs and arms. When it starts, I can’t do anything about it. Except this time, I realized I had limited range of motion in my left foot AS it was mid-spasm. Yes, it was very painful. It felt like my ankle or some part of my foot was going to fracture when I moved it in an outward motion. OUUUUCH.
The next day, my foot was tender and I kept it elevated and used CBD balm on it. Over the following days, I ordered a soft ankle brace. If the spasms kicked off, I wanted to have support.
Also in those post-call days, I’m fairly certain I broke my right pinky toe. A stubbed toe scenario resulting in swelling and color changes = not good. It’s not exactly the shape it used to be either. Still a little bit sore, especially when I wear shoes. Whatever. What can I do about it now anyway? Pretty much what I could do when it happened = nothing. 😂
After I mentioned that, he asked I’d had an x-ray done. Ummmm, nooooo. I won’t go to ANY medical office until NYC opens more. No way. When he saw my expression, he chuckled and told me to keep monitoring it.
Which brought up the other appointment he’d expected me to make. And I did it! I’m seeing one of my other docs to check my circa ‘98 lymph node in mid-September.
See doc? I did my homework. 😉
The timing of most of this stuff was just jackass. As per usual. Then I have to remember every detail until weeks later, when I can relay all of it to him. And since my memory is AMAZING – not – I have to write it all down.
So here’s to the not-so-jackass moments of life. The legitimately perfect timing kind. May there be many of those in the coming week. And I’ll just keep monitoring all of my weirdness until the next call. 😁
Peace and painlessness,
#thisiswhatsicklookslike #rsd #crps #arachnoiditis
I’ve challenged myself to read 50 books by the end of 2020. As I’ve been home since March 11th, I’ve been able to read a lot. But not as much as I’d like.
Isn’t it funny though, the way we plan to do so much and accomplish so little? That’s me, every day of the week. Willie Nelson singing, “Ain’t it funny, how time slips away?” just popped into my head.
I’m about 21 books in. The number is actually higher since I’ve also re-read at least four books/book series. I’m trying not to count those though.
I’ve started a new book, The Beauty In Breaking, by Dr. Michele Harper.
Barely a few pages in, I found two quotes that resonated so deeply for me and my RSD story that I shared them immediately. She obviously wrote them about her own life experiences, but these are universally applicable.
The first: “In practicing the Japanese art of Kintsukuroi, one repairs broken pottery by filling in the cracks with gold, silver, or platinum. The choice to highlight the breaks with precious metals not only acknowledges them, but also pays tribute to the vessel that has been torn apart by the mutability of life. The previously broken object is considered more beautiful for its imperfections. In life, too, even greater brilliance can be found after the mending.”
It’s a profound way to acknowledge what’s happened and not try to pretend it hasn’t. I like to imagine that the cracks I’ve earned would be filled in with – you KNOW what I’m going to say here – glitter. Bonus points if you guessed the color – SILVER, of course! Can you imagine it? That way, even in my painful moments, I could look at my brokenness and see sparkles, veins of shining brightness. That would actually make me appreciate all of my breaking even more. And help me resent my body and it’s breaking less. That would be something.
No one gets out unscathed. Things affect us from our earliest experiences to our last breath, the scars (seen and unseen) travel with us. (Now I wish that all of my physical scars were inlaid with silver glitter).
If you’ve been with me since the beginning, you know that I’ve never pretended that my early RSD years were easy or pretty. They were neither. I’ve come a very long way in my journey. A person can learn a lot in 17 years. Or at least hope to.
So my breaking would apparently be visible from space, IF I had my way. How would yours look? We can’t change our damage, only try to grow and learn from it. As much as that’s even possible.
As for the other quote: “I had to find this center for myself as I took stock of experiences that were exceedingly painful yet that ultimately filled me with the promise of a meaningful rebirth, a rebirth that is worth the surviving, worth the healing, worth the repair.”
Those words are so spot on. Reading them, over and over. Actually tearing up because they’re extremely powerful. It’s a raw acknowledgment of the hurt and the despair but also the hope. I’m a major proponent of hope. Sometimes, it’s all we have.
And I’ll take it. And some glitter.
Whenever possible, take time to see your breaking. Be with it and own it. But don’t let it destroy you. Fill the vein with glitter, or whatever color or texture or sound empowers you to see hope. Whatever helps you to breathe and go on. And know that we’re all doing our best to fill ours in too. You’re not alone.
Peace and painlessness,
#thisiswhatsicklookslike #rsd #crps #arachnoiditis #thebeautyinbreaking
The Beauty In Breaking: A Memoir, by Michele Harper. ©️7/7/20 Penguin Randomhouse.
If you ask most people the exact days that certain things happen, they’ll remember. Birthdays, wedding anniversaries, deaths, etc.
Those of us living with chronic illnesses have dates too. Most of my RSD/CRPS friends know the exact date of their diagnosis. I, unfortunately, do not. I just have a three month window to look back on: September to December, 2003.
The wheels came off in early September. Then everything hit the fan in December, when I had to have the foot surgery that ultimately saved my foot but was too late to actually fix it.
But that’s of no consequence this week. The date that I’m focused on is 7/28/16. I took the included pictures en route to the hospital.
On that morning, I had my intrathecal pump taken out. Having it placed in 2010 was, of course, one of the most important days of my life. It, I’m convinced, saved my life – giving me nearly seven years of tremendous relief.
But the roller coaster of deciding to remove it and not get a new one was terrifying. Making choices I never wanted to make – (and truthfully never imagined I’d have to) – was awful. But it gave me an entirely new perspective on life.
Years ago, someone asked me how it was that I couldn’t remember my exact diagnosis date. She said it as if I’d instantly failed Chronic Illness for Beginners. I’m sure it’s in my brain somewhere. But there are way too many dates of visits, procedures, diagnostic tests, etc. in my medical history.
On that day in 2016, I got a piece of myself back. Withdrawal was a nightmare, my pain was bad – but I survived and came back stronger and more in control than I’d felt in a really long time.
So much about living with health issues is 100% out of our hands. Needing medications, operations, having internal devices placed and maintained, using canes/crutches/wheelchairs. We don’t get to make a lot of decisions that aren’t driven by circumstances, if that makes sense.
When I decided to hold off on replacing the pump, my doc was surprised. He didn’t push me to do anything, one way or the other. He supported my choice to wait. He was just thrown by my reasoning, I think. “I just want to see if I can make it another month.” It was mainly because he didn’t want me to needlessly suffer, “just to see if..” I get it. My choice sort of came out of nowhere.
When I left his office on the day of the permanent shut down, he said we’d get the surgery scheduled ASAP to place a new device. That was the plan. That was what I wanted. Or what I thought I wanted at the time.
Once I got some distance, it began to feel manageable. And it wasn’t without considerable pain. But sometimes acknowledging our own agency is the best and only decision we can make. I haven’t looked back.
So here’s to the moments in life, in chronic illness, in times of despair – whatever they are – that we can be our own advocate and change course. When we can truly decide the “what’s next” and the “how.” And here’s to owning those choices (whether the outcomes are good or bad) and moving forward, the best way we can. ❤️
May this week be a calm, low pain one. (Come on 2020, give us a break).
Peace and painlessness,
#thisiswhatsicklookslike #rsd #crps #arachnoiditis
Last week, I celebrated my 47th birthday. It got me thinking about where this all started. It took me back to 1998. Twenty-two years and a medical textbook later, it sometimes feels like I’m reflecting on someone else’s life.
But there she is. There I am. I was deliriously happy. Graduating from NYU with a BSN. It was the seemingly unattainable goal, at least it felt like that before I was accepted into the program.
Once I was there, I soared. Nominated and accepted into Sigma Theta Tau, the international honor society for nurses. Assisting in recruitment, speaking at events and encouraging other second career and older students to make the leap. A job lined up at a prominent NYC practice, their first ever RN. Things were looking up!
And then the summer came.
First came our one and only trip to Florida. I returned from our incredible trip to Walt Disney World really swollen. The sun did a number on me. More than usual, my fatigue and joint pain were excessive, complete with costochondritis.
Then came Fourth of July weekend and a tick. Thankfully, the bullseye rash was prominent enough for my new boss to freak out, sending me (really throwing me out of the office) to her infectious disease specialist friend. I was lucky it was caught and treated quickly.
But that all happened between May and July! By August, I was seeing a rheumatologist. And the rest, as they say, is history.
I was 24 in that picture, in such an almighty rush to get to 25. Genuinely believing that my adult life would truly take off, that everyone would “take me seriously.” 🤦🏻♀️😂
I wish I could have warned her. Given her a heads up: don’t sit on that bench! (Tick heaven, apparently). Stay out of the sun (read: avoid Florida). Advocate better for yourself (everything that happened with that $&@?! podiatrist).
She was naive. I was naive.
My advice to my gal is to not be in such a rush to get to any age. It comes before you know it. Enjoy what’s in front of you.
And though I’m not an age-is-a-problem kind of person, I feel like 47 took me by surprise. A tiny bit. Which is odd, since – in my head – any time age came up during the last year, I was mentally clocking in at 47. LOL.
Life happens whether you’re ready or not. Hard, bad things happen when you’re ready for only good. But we carry on as best we can.
My wish for each of you is to find good in the right now – however old you are, whatever hard is happening. Because goodness knows we’re all dealing with our own hardest things. And this on top of a pandemic! Ugh.
Take a moment, take a deep breath, take one step at a time.
Be well and know how grateful I am for all of you.
Peace and painlessness,
#thisiswhatsicklookslike #arachnoiditis #rsd #crps #47andgrateful