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
Who among you likes the music of Queen? ALL of you?? Excellent. We’re on the same page. 😉
When I’m preparing dinner, I tend to listen to music or audiobooks. I’ve been enjoying Queen: The Platinum Collection, Greatest Hits I, II, and III. It’s EPIC and I strongly encourage everyone to listen to it immediately. Well, after you’ve finished the blog. 😉
Although my voice is nowhere near what it was when I was younger, I still like to sing along. (My neighbors must love me 😂). I’m pretty sure I’ve mentioned that I sang constantly as a child. My dream was to be a Broadway star, beginning with Annie. And then a rock star. Completely realistic, right?
When I say that I found ways to sing, I’m not kidding. Ask anyone in my second grade class. (😬 Can I apologize to my captive audience? 🤦🏻♀️). Two choruses in high school. The school musical senior year, I played Oliver. (It was glorious). I sang in church and became the leader of song for a time. Karaoke with my eldest sister. I even wrangled my way into a couple of songs at my husband’s gigs when we were dating. And when our gal was born, we both sang (and sang and sang). It got to the point where my husband asked if it was wise to stage a full concert at bedtime. My nights putting her to bed usually ended on the late side. What can I say? One show tune leads to another. And another. Our sweet baby loved the music, I was only giving her what she wanted. (I’m still telling myself that). 😂
My voice isn’t even close to what it used to be. It’s mostly lack of use, I’m sure. And age. And health. And meds. And, and, and. Anyway, I started wondering why I stopped singing, really singing. I wish I could pinpoint when it happened. All I know is that it was somewhere between CRPS and today.
But back to the music. If you’re familiar with the song, “Seven Seas of Rhye,” you’ll know the part where they sing “Forever. (Ever. Ever).” Listen to the notes getting progressively higher. That moment. (Just listen to it, trust me). I see it as a life metaphor. Goals, attainable and otherwise.
I feel like I’m always striving for life’s high notes. Most of the time, I very nearly get where I want to be. But it’s a rare and precious thing to hit them: getting things done, remembering the things that matter. Just this morning, I walked around the apartment hanging up notes to myself. At some point today, I’ll have to refill all of my medication trays. If I don’t remind myself, it’ll be 1 a.m. before I discover that all of them are empty and I have no meds set up for tomorrow. It might not seem like a big deal to someone else, but it’s one of my biggest pet peeves. And totally avoidable.
As for getting other things done, I generally don’t say what my plans are unless I know I can actually do them. Otherwise, I feel like I’ve let myself down. Announcing that ”I’m going to the post office and the pharmacy,” and then not going really irks me. (It’s ridiculous, I know. There are certainly bigger things to be upset about).
I know I couldn’t ever hit notes like Roger Taylor on my best day, (I mean, come on). But metaphorically speaking, I can try. And when things go right – when I manage to accomplish things, regardless of how big a project it is – I’m so happy. It’s mostly a small happy, but I’ll take it.
Just yesterday – without saying anything – I started organizing my sewing supplies. When our gal came into the living room and saw the mess, she immediately asked, “What happened?” (It did look like a craft store exploded). I was trying to find a specific fabric. Of course I realized it was already on top of the sewing table after pulling everything else out. And that, dear readers, is why I need constant reminders, alarms, and post it’s. 🤦🏻♀️ But doing that small project made me feel accomplished.
For anyone balancing the normal every day stuff with health issues, finding joy in a time and space that seems determined to leave us out is simply magical. Actually, I’m going to amend that and say it applies to all of us, health issues or not.
To anyone who says that we shouldn’t make such a big deal about things, I’ll simply say, “Galileo!” (Actually I’ll say it at least five times 😉).
Go forth and hit the high notes. ❤️
Peace and painlessness,
#thisiswhatsicklookslike #rsd #crps #arachnoiditis #queen
Last week, I mentioned that I was feeling too scattered to write anything. That feeling carried over into this week, but I decided to try. Quarantine has seriously screwed up my blogging.
I had my monthly telehealth appointment on Friday, June 26th. In the days beforehand, I had a terrible flare – a new kind of flare. Or an adapted one, if this makes sense. Sometimes, old autoimmune issues resurface and combine themselves with CRPS things. Those are FUN days. 😖
To make things even more exciting, I’ve had the worse reaction to mosquito bites for the past month. And I constantly get bitten, regardless of what anti-bug bite spray I cover myself in. Then I develop a rash around the bites and the entire area becomes unbearably itchy. I’ve even resorted to using ice, layered through towels, etc. But I’ll get back to that.
I think it was Sunday night or Monday morning, I had an intense burn across the top of my chest. From shoulder to shoulder, across my sternum. It was painful to the touch. It didn’t stay on the surface though. Not long into this pain, I realized it was in my chest wall too. Similar to when I would flare and get bouts of costochondritis. [An inflammation of the cartilage connecting your ribs to your sternum, causing chest pain]. In an effort to ease the external burn, I applied CBD balm. It took the edge off.
While that was happening, my lower back and right side of my neck were also fired up. Burning like they were competing for a prize. One would calm a bit and the other would get worse, back and forth for days – along with the chest pain. I started using lidocaine ointment on both spots. Again, it took the edge off.
So, as it always does when my body is flaring in any way, the lymph node under my right arm got bigger. It felt like a ping pong ball that was cut in half. It hurt and made resting my arm at my side uncomfortable.
This is how it always is, I cannot stress that enough. The node is always there, even if it’s not swollen and painful. It’s always been a barometer of how I’m feeling.
As I relayed this to my doctor, he looked up and into the camera – eyes widened – and said, “It’s always like that?” Clearly, he wasn’t reading my full chart. It’s been this way since 1998. I’ve said it hundreds of times. Every doctor has checked it. Every doctor agreed that it was a flare response.
Then he said, “it could be that…. or it could be a lymphatic draining issue. Maybe it’s time to get it looked at again.” He must have seen my expression, then added, “we can go on assuming one thing when it might be another. I don’t want to continue to just write it off. And its worth following up with your dermatologist about the bug bite reactions. Maybe you’ve developed an allergen to certain types of bites.”
Seriously?!? But, really, would that surprise anyone whose been reading these blogs for any length of time? Probably not.
So, I’ve lost a bit of sleep about the lymph node. It stayed inflamed for about five days and then it reduced to a slightly-bigger-than-a-quarter stage. Now, it’s about the same. No pain though, which is how it usually is.
I’m not ready to get back on a subway train or walk around Manhattan, going to a doctor’s office. When I told him that, he said it wasn’t an emergency, just worth following up on. I intend to do both things, I’m just waiting until the city opens up a bit more. If he had said, “no, you cannot wait. Get on the train immediately!” I, of course, would have done that already. But he didn’t, so I didn’t.
There is no need to panic! (That one’s for my family). Seriously.
I guess I should consider myself lucky to have a flare meter. (Come on, I’m trying to see the good in it, if there IS any good in it, LOL).
That’s where we are. That’s what scattered me. It’s why I’m still scattered – living each day in much the same way, over and over. It’s thrown me off my game. I think it’s thrown many of us off. How could it not?
So here’s to finding our way through uncertain times, to a low/no pain week, and to finding joy when we least expect it. ❤️
Peace and painlessness,
#thisiswhatsicklookslike #rsd #crps #arachnoiditis
This week has had too many moving parts to process at the moment. Nothing too dramatic, I’m just feeling scattered and have had a hard time putting pen to paper. Or fingers to keys, in my case. LOL.
So I went back to the archives and decided to repost one of my favorites. And one that’s relevant, especially as we navigate getting back out into the world. (Please wear a mask. That’s my public service announcement for the week).
Without further ado, here’s “Managing the Stuckness…” ❤️
Thursday, 4:30 p.m. I was talking to a friend, describing my odd lack of enthusiasm for rejoining the human race, with regards to school and work. She listened quietly then said, “So you’re stuck.” I sat looking at her for a minute, then said, “Yeah, I’m stuck.” It made total sense and yet it took a completely separate person to declare the obvious. I am stuck. It would be silly not to acknowledge that all of us get stuck from time to time, caught up in the difficulties and chaos of these lives we live. And I’ve been living mine with little to no sleep for a very long time.
I’ve never been much of a sleeper, at least not in my adult life. If I think hard enough, I have vague memories of long sleeps. Those glorious, unwaking hours of childhood and teenaged years. When did that change for me? Not a clue. I can honestly say that in the last five years, if I averaged two or three hours per night, I considered it a good night’s rest. But it’s not! All of this contributes big time to the stuckness. Stress does too. Since my surgery, I’ve contended with complications and new medical issues that I didn’t anticipate. And thus, here I am, physically moving forward while emotionally putting blockades in front of the door marked “my future.”
In that same conversation, I mentioned returning to school tonight. So by the time this is posted, I’ll have been to my first class of the fall semester. When I finally registered, I chose dates that seemed far off. And now it’s here! The first night of the first class. That’s the funny thing about the future, it’s always coming at us. We’re always caught up between moving forward and the stuckness of living as “sick” people. Stuck waiting for doctor’s appointments; for our medications to work as they’re supposed to; for comfort when none can be had; for our pain to stop, or at least ebb. We are perpetually in the stuckness. All while being propelled toward tomorrow and the joys of the unknown. It’s the same for the generally healthy too. That’s life. I found myself stalling this afternoon. Checking emails for the hundredth time. Looking in on my RSD families, making sure everyone is alright. All of this as I nervously watched the clock. My class starts at 6:30. What time did I have to leave to get there on time? Carefully plotting out the steps to the train, which direction I would take from my stop to the school. Yes, that’s where my mind was. It’s a subway trip I’ve done countless times over the course of my life. But I wasn’t as acutely aware of the stuckness then. Now I am. Now I’m semi-frozen to the place that I stand. But I can’t be, not really. I mentioned to that same friend that during my thirteen years of having RSD, and the five before that having lupus, I’d come to expect nothing.
Complications happened. Surgery after procedure after surgery. It was a receiving line of bad news, more often than not. So I learned to just get up every day, very often with help from my husband. He’d have to come around to my side of the bed and practically lift me to sitting. It was awful! But I’d get up, one way or another, focus on getting my daughter to school, then rest. Later on, I’d pick her up. We’d come home and have a snack, work on homework. All that time, I had myself running on the schedule of “one more thing and then I can rest. One more thing and then I can rest.”
During those years, I genuinely thought I was hiding my sickness from my daughter. There was no way to miss it though! She was caught up in my illogical regimen. My stuckness became her stuckness. Although I’ve always maintained a positive attitude, to the point that most people had no idea I had any medical issues at all, internally I came to expect the worst when it came to my health. I made no plans beyond caring for my daughter each day, basically had no expectations, or so I thought. My friend pointed out, by expecting nothing good, I was truly always bracing for the bad. The years went on, my baby girl was growing up! I was holding steady at my medication doses, having procedures when needed, usually every 4-6 weeks. Those were painful years. I didn’t think I’d have a future any different from my present at that time. I was stuck, and very wrong. I talk to people in my online groups about what the day to day of this disease is like. It’s complete crap, to be honest. I’ve come to know some folks that were just diagnosed with it and I genuinely feel for them.
Friday, 12:45 p.m. (I stopped on Thursday because I wanted to see how the class went before completing this post) I left for the city. Read a magazine on the way. After arriving at my stop, I decided to venture up a different street since the rush hour crowds were thick with people trying to get home. After stopping in the main office to update my semester sticker, (so far, so good), I went to the bookstore to buy the text that had just been added to the course description, (No such luck!). The kind saleswoman said she didn’t even know about the out-of-print books being needed. (Ok, that one’s out of my control). The classroom is in a new building for me. Making my way up to it, I hear voices. After rounding the corner, I see a familiar face. One of the women from my last summer class is in this one too! That’s a lucky break! My professor is like that cool older friend we had as kids who knows a lot about a lot. She’s an encyclopedia of costume/fashion/film, and probably a hundred other things too. Laid back and funny as well. This will be ok. As I make my way back toward the subway, through still bustling streets, I find myself smiling. It’s involuntary. Stuckness or not, I made a plan that involves becoming a wardrobe technician. And, stuckness or not, I plan to follow through on it.
There’s no rule book that RSD follows. It’s all up in the air. What meds will be prescribed? Will they work? Will I need procedures or scary sounding devices? Will this pain stop? Will RSD spread to my healthy limbs? If my today self met my 13 years ago self, I could honestly answer those questions: You’ll work up to taking at least 12 pills a day at some point and briefly (6 years) require an internal morphine pump. Some meds will work, some won’t. You’ll end up finding out you’re allergic to a bunch too. Yes, you’ll have somewhere between 80-90 small procedures to major surgeries. No, the pain won’t stop. That’s a tough one to accept. Some days will be much better than others. Yes, it will spread. It’ll be in your left foot for a while. Then it will spread to your left arm. Then the right foot, leg and arm. In there somewhere, it’ll affect your face. Oh and your back. Somewhere in that timeline, you’ll need spinal surgery to correct your lifelong back pain. That’s before they’ll let you get that pump. Also, along the way, you’ll develop spasms in your hands and feet. There are other things, but that seems like an awful lot to digest. I know that my younger self would have launched straight into denial, hearing all of that. But what good would it do? Life happens whether we’re ready or not. Whether we are stuck or not. Fast forward to now. Ok. Here I am, mired in the stuckness up to my eyes, and ultimately miserable. I allowed myself to hope, it didn’t work out exactly the way I planned. But, as my very wise friend pointed out to me, I’ve been a chameleon all these years, recreating myself based on my health at the time. I’m a survivor, someone who lives with the overall ethic that the “show must go on!” She’s right. I had two options: I could unenroll from the class and cut my losses OR I could get on that train, stuckness or not, and go to that class. I could worry about my physical ability to sew OR I could try to refine a skill I’ve had all my life, slowly and with breaks. To be continued……. ((NOTE: I’ve since graduated from the program! Yay me! 🥳).
How will you break through your stuckness? Make it good, fun, light. Make it count. Finish p/t even if it hurts; take your meds on time; try to break bad sleeping habits, (that one’s for me). On the light side, watch a movie that helps distract you from the pain. Share a laugh with someone who brings you joy. Read a book or listen to your favorite music. Every time we do those things, the stuckness gets weaker. And after all, the show must go on.
Peace and painlessness,
#thisiswhatsicklookslike #rsd #crps #managingthestuckness
I came across an old article about a doctor I knew a looooong time ago. The piece lauded him as a brilliant saint. Before I launch into how problematic this was, I’ll say this: I, in my position as a nurse, had my “professional face” and my “Becky is not on duty right now” face. We all do on a daily basis, obviously.
During nursing school and in my working years, I met many healthcare workers who spoke one way (read: kindly) to patients and another way (read: horribly) to hospital staff. That always bothered me, the extremes to which the pendulum swung. Then, after my diagnoses, I started meeting healthcare professionals who spoke down to their patients as well. That was an eye opener.
Although I met the article doc as a patient, I knew of their reputation as a brilliant specialist when I was still working. Our interaction was brief but demeaning.
I was sent to him as a second, (maybe third?) opinion before my own doctor (at the time) would begin certain procedures. Sitting in his office, walls covered – and I mean covered – with pictures of the doc posed with athletes and celebrities he’d treated was overwhelming. It was simultaneously encouraging and intimidating.
He breezed in and looked at the notes my doc had sent over. Then he said, “I’ve healed hundreds of first class athletes, Olympic athletes….. I could do something for you.” You’re going to read that as a good thing. It would have been, of course. But his tone – and the wave of his hand in my direction as he read my chart – was as if working on a non-athlete/non-superstar would be a waste of his valuable time, but he could do it.
We left the office. We both heard the same implication. Over the years, I’ve seen many sports medicine folks (docs and physical therapists) who said the exact same thing. Obviously, their time is valuable. But my life and well being are just as valuable as their famed, Olympic athlete patients.
It was an off-handed comment not meant to insult me, obviously. But it struck a cord, especially in the depressed state I was in at the time. I was (am) a never-going-to-be-cured patient whose body will only get to a certain level. I’m not a celebrity. I’ll never end up on the wall of fame. But that doesn’t make me less than.
When I was working in a private practice, we had a few consistently rude patients, only to the staff though. One of them always snapped her fingers and addressed me as “you.” We were instructed to disregard it. One afternoon, I’d finally reached my limit. I pulled her aside and said, “In the future, I would like to be addressed by my name. I’m not a dog and I will not answer either to ‘you’ or by finger snaps.” She was stunned. My boss was horrified and livid. But the woman apologized and we never had an issue again. She said she respected me for speaking up. I shouldn’t have had to, but there we go. It was one of the only times I took off my nurse mask. Otherwise, I was constantly pleasant and helpful, no matter how patients (or coworkers) interacted with me.
In a semi-connected sidebar, I was recently telling my husband and daughter how much I enjoyed when new residents started on the postpartum floor. It gave me the opportunity to show them how to interact with staff and patients. And how much better it would be for everyone if they weren’t demanding and rude to the nurses, nursing assistants, housekeeping – everyone! Treat the staff with respect. Treat patients kindly and like people, not medical mannequins that can be poked and grabbed at will. It was my brief but hopeful attempt to get them to be better practitioners. One of them said something to the effect of, “it doesn’t matter how I ask, as long as it gets done.” We had a long, interesting conversation about how wrong he was. LOL. It does matter.
And – back to my own patient experience – while I appreciate and absolutely respect the years of hard work someone puts in to make people’s lives better/longer/healthier, I don’t respect treating super athletes one way and average, every day people another. It’s kind of gross, in my opinion.
Maybe I’ve been at this too long. Maybe – after seeing the walls of so many doctors – I resent the fact that, but for a certain podiatrist who didn’t believe me, my life could have been very different. I would never have been an athlete, I know that much. But maybe I’d still be working, more active, stronger. I’ll never know.
This one is a ramble, I’m sorry. But seeing someone framed a certain way when I had a completely different experience with them struck a nerve.
As patients, we’re our own advocates. We have to defend ourselves on so many fronts. Getting medications, getting seen and heard. Finding doctors who listen. Dealing with insurance companies. Trying to get insured. Being a patient is it’s own full time job. And some of us are trying to actually work full time.
Treat people with dignity. I don’t care who it is or what they do. I don’t care how they act. Treat everyone with kindness. You don’t know what they’re dealing with, but it doesn’t matter. Each interaction we have sets the stage for the next person we (or they) meet. And so on and so on. Each moment effects the next and the next.
That’s enough of that. Take care of yourselves and know that I’m sending good wishes out for all of you. ❤️
Peace and painlessness,
#thisiswhatsicklookslike #crps #rsd #arachnoiditis #bekind
If body parts could verbally express their emotions, mine would say it’s kind of fed up. Specifically, my neck. My neck would tell me she’s had enough and just doesn’t want to be supportive anymore.
Yesterday, I told my gal that I feel like my head could just collapse onto my shoulders at any moment. Like an accordion. That’ll be that and I won’t be able to do anything about it. I told her this while I was laying on the floor, using a cervical pillow. (See image below). Needless to say, her expression was a mix of compassion and horror. Ahhh, these honest conversations with mom. 😬
After my doc suggested that I ditch some pillows, I tried. He also suggested that I should try cutting back on my pain meds. That has not happened. Let me back up.
When I went to bed on the night of the call, I did remove two pillows (one regular and one travel neck pillow). It wasn’t the best night. But, thinking that I just needed to get used to it, I continued for a few nights. Then I tried laying with the pillow and a rolled, thin, cotton t-shirt under my neck. I have no idea what the heck my logic was there. “Hey doc, I’m still just I’m using one! Yay Me!” This made everything worse.
After a week of limited to no sleep, I brought the neck pillow back. Then my second regular pillow. It was too hard. Waking up with no feeling in my left arm for 6 hours is waaaay better than constant neck pain.
And it is constant now. It always was, but I could almost ignore it. Now, it burns and nags. Sometimes, it’s bad enough that it scares me.
Looking back at old MRI’s from 2017 and 2019, nothing had changed from one to the next. Discs were bulging. Spinal cord looked okay. So why do another one now? I’m not rushing over there anytime soon. What’s the point?
My husband suggested a different pillow type. I ordered a side-sleeper pillow. It looks like a candy cane. We’ll see if it helps.
The other thing he mentioned, which I hadn’t thought of, was a neck brace. Would it help when the pain is at it’s worst? Looking into it, I decided that it would be worth trying. Stay tuned on that. It should feel FANTASTIC now that the temperature is going up here in NYC. 🤦🏻♀️
Sidebar: I’m reeeeally not a summer weather gal. I’m a cool spring or fall gal. Not winter. Definitely NOT summer. The only good thing about these months was school being out and my husband getting a few days off. Otherwise, noooooooo. I’m a summer nerd: I burn easily. It’s too hot. I don’t like the beach, except in the evening. Blah blah blah. 😂
Anyway, painintheBECK is dealing with pain in the neck. I’d be super happy if the discs could un-bulge themselves and life could get back to….. hmmm. Since my body hasn’t had a “normal” state in several decades, I’ll just say get back to pre-discs.
Anyway, that’s where things stand for me. My wish for each of you is that you feel safe, seen, and heard. ❤️
Peace and painlessness,
#thisiswhatsicklookslike #rsd #crps #arachnoiditis #mycervicalspineisamess
It’s hard to put it into words. Seeing what we’ve all seen. Hearing what we’ve heard. Knowing what we know. Uncertainty about what we don’t. All of the events of the past few weeks – months, really – it’s hard to find the words.
Somehow, going on and on about my life and health just doesn’t seem all that important, or appropriate.
I’d rather share the beloved words of Lana Rafaela, “I think it’s brave.” And an anecdote about our little garden.
Two days ago, my gal and I checked on our plants. Our much-loved Persian Buttercup had dried up (despite watering and care) and seemed to be dead. Now, I’ve already told you that we’re new to the gardening game. We literally have no idea if we’re doing things correctly or not, most of the time.
We talked about letting it go, was it too late to salvage it? Apparently not. Last night, when we went outside to get the mail, a tiny bud was peeking out at us. To say that we were happy is an understatement. It gave us hope.
Today, I went downstairs and saw a bloom. Bright and beautiful in the midst of a gray and rainy morning. There it was. Despite everything else in the world that’s crushing us – hope appears.
I don’t have an answer. And while it may seem foolish to some, I retain hope. Even if it’s only as large as a tiny blossom, I hold onto hope. ❤️
Peace and painlessness,
#thisiswhatsicklookslike #crps #rsd #arachnoiditis
“I think it’s brave,” by Lana Rafaela © 2017, from This Is How You SurviveCreateSpace Independent Publishing Platform; 1st Edition (November 5, 2017)
This has been a particularly difficult week if you’re seeking positivity and good news from the news. I know it’s out there, but overshadowed by some truly traumatic stories.
I almost didn’t post, but then I remembered how much my weekly publishing record means to me. That’s when I decided to start small, by looking closer to home to find something – anything – that brings me peace.
Recently, a friend recommended the book, “The Boy, the Mole, the Fox, and the Horse,” by Charlie Mackesy. (Thank you, Ingrid!). I read it, reread it, and then read it again. If you haven’t read it, I highly recommend it.
I kept coming back to the page bearing the words:
“Sometimes,” said the horse. “Sometimes what?” asked the boy.“Sometimes just getting up and carrying on is brave and magnificent.”
It’s true. Sometimes, just showing up is a start. Just being. Some days, that’s as good as it will get and that’s okay. Showing up for ourselves, our families (currently via text and FaceTime calls), our coworkers (even if it is on a zoom call), our neighbors (waving from a distance while masked). We’re doing our best to show up and that takes courage. Especially during this shared experience.
During my telemed call with my doc, he asked what I’ve been doing each day – how I’m coping. I’m not even sure what I said. We talked about my sleep and taking melatonin – I’ve taken it a few times, not every night. It’s helped. We talked about using less pillows when I sleep. I’m a side sleeper, on my left. Sleeping on my back and my right side is nearly impossible. He thinks propping my head up could be pulling on the nerve roots in my neck, causing my left arm to become numb with nerve pain extending down to my fingertips. That happens every night, lasting until sometime in the early afternoon. (It’s 1:15 p.m. and I still have that painful, slammed-my-funny-bone-nerve-on-something-sharp sensation. Not a good feeling). He suggested an MRI, saying I could come into Manhattan or have one done here in Brooklyn. I declined. He understands my hesitation about taking the subway and going to medical offices at the moment. No thanks. (And, by the way, I tried sleeping with less pillows last night, it helped a little. But there’s still that annoying nerve elbow situation. Oh well. It’s a start).
It was just a short check in call, over in about ten minutes. He’d asked about my day to day, and I completely forgot to tell him about our plants. (This is a terrible segue from neck nerves to gardening. I apologize.)
My gal and I have become obsessed with having a garden. As we have zero access to any green space, we’re creating an urban garden, (see the included collage). We also have one Zamioculcas zamiifolia aka ZZ plant in our kitchen. (That’s the gorgeous green plant in the stripe-patterned pot).
The seedlings will hopefully grow to be full grown zinnias and calendula flowers. My gal has a naturally green thumb. However, my past plant experiences aren’t great. 😬 She keeps trying to get me to stop saying that. This time is not that time. These plants are not the ones from before. Begin positively. She’s right, of course. But since we’re doing this together, I’d love for it to go well.
Taking care of these plants has brought us a ridiculous amount of joy. Checking on them. Watering them. Rearranging them, more than once. We’re two hovering plant moms. (As I could be a professional hoverer, this is not a stretch for me).
I’m also reading more. More non-fiction, new authors. It helps me spend less time on my phone, (away from distracting apps), and my iPad (where Hulu and Netflix wait, though I love both).
Find something – big or small – to take the sting out of what’s outside, out of what’s on the news, what people say.
That’s what I’m trying to do. I’m trying to go through each day, without freaking out over the news or the pandemic or missing the rest of my family. I’m trying to be brave. Sometimes, that effort falters a bit and I show my worry. That helps too. It helps to say things out loud. Saying we’re afraid doesn’t make us less brave. I think it shows our strength in being honest enough to admit our truth. It’s the same with showing up. We don’t have to have all the answers, know every escape plan. We just have to be. Our presence is enough. Maybe clarity will show up also. Maybe it won’t. And that’s okay.
I can’t fix everything. But I can show up. And that is brave and magnificent.
Wishing each of you things – big and small – that bring you peace and joy. May this week be a calm, low pain one – both physically and emotionally – for all of us.
Peace and painlessness,
#thisiswhatsicklookslike #rsd #crps #arachnoiditis
The Boy, the Mole, the Fox, and the Horse, by Charles Mackesy, © 2019 HarperCollins Publishers.