Someone once asked me why I started blogging. At the time, I thought it was about helping myself cope. I’ve since realized that it’s much bigger – andfar more important – than just one person.
Why do we tell stories? Why share at all? Stories bond us together, enabling us to find common ground in the human experience. Finding the courage to speak our truth, share our chapter of this massive “book,” is crucial. It’s especially important for people who are living with chronic illnesses.
RSD has given me moments that run the gamut, from being told that “the pain cannot be as bad as (I) described it” to finding compassionate allies in support groups. RSD is isolating. It’s not recognized like other ailments. So we battle every day for awareness and acceptance. Though we’ve come a long way, there’s still a massive journey ahead.
So I share my story. It actually took me years to publicly admit that anything was even wrong. Parents, teachers, neighbors – no one knew. I kept it private because I saw how medical professionals treated me early on. I didn’t want to explain my weird health problems. It was awkward and disheartening. So I kept myself to myself. Only those closest to us understood the depth of what was happening.
I occasionally heard other patients talking about their RSD at the doctor’s office. It was terrifying because they were so debilitated, so sick. I never joined in. One man’s experience resonated the most. I was sitting in the waiting room when the door opened. In came a man in a wheelchair, slumped and moaning, an emesis basin balanced on his lap. When his companion let the receptionist know he’d arrived, he said, “Something’s wrong with the pump. He’s been throwing up all night.” I sat, immobilized. Was the pump that caused all of this man’s upset the same one they were encouraging ME to have implanted?!? Forget it, I thought. No way. And thus, the surgery was put off. But then, I saw the same man a few months later. He looked so different, I barely recognized him. Sitting upright, smiling. I got the courage to ask about his improvement. His answer was, “They adjusted my pump. I feel so much better!” But then we both got called in. I never got to hear the rest of his story. I wish that I had.
Years ago, I found a chronic pain support group. It felt weird to me, sitting in a circle, everyone talking about how bad they feel. This group was not helpful. I was the only one with RSD. Even my support group looked at me like a freak. Everyone else was dealing with things like arthritis and cancer pain. Once again, I was an outsider. My relationship with the group didn’t last very long. All anyone talked about was how bad things were, which is important obviously. But there was no encouragement or ways of coping, no “this helped me” type of stuff. And the group leaders seemed more judgmental than supportive. It was depressing. So I stopped attending the meetings.
That’s one of the best things about the online groups I belong to. Of course we vent, we get upset and need to talk about it. That’s imperative! The groups are places to speak your truth without judgement, among people who completely get it. Finding that safe space in a world where people don’t necessarily believe you or care enough to understand? Priceless. I pray that none of my non-RSD readers EVER has to find that out personally.
Telling your story, your truth, is crucial for everyone. We validate each other by caring enough to listen, to really hear what’s being said. When you’re made to feel like a freak for any reason, it’s a game changer to have others respect you. When people care about your journey – whether it’s medical, social, etc. – it’s as though you’re no longer a ghost. Does that sound odd? I think my fellow RSD warriors will understand.
RSD makes us outsiders. Our descriptions of the pain and symptoms make us anomalies. I’ve had residents sit across from me as recently as May, looking as though I was just pulling random adjectives from the air. They simply don’t get it.
So much of our condition forces us to avoid touch. Having someone innocently brush your arm can cause fiery flares that are agonizing. Getting bumped on a crowded bus or train is inevitable. Having it happen when you have RSD can be a disaster. A spontaneous hug, a friendly arm tap, the snuggles of our children – those human connections often get lost. So RSD-ers rely heavily on our words. We therefore also rely heavily on the words of others, on how people react to us. Positive feedback, encouragement, kindness. I think they help us focus on healing, on taking better care of ourselves, because we’re not battling constantly to be believed or accepted. I cannot stress this enough.
Listening, having empathy for another, makes us better people. For those among us being heard or finding that safe place for the first time? That is everything.
Tell your story. You never know who might need to hear it and realize they’re not alone.
I write not just for my own healing, but for every RSD warrior. Every chronic pain patient who’s labored to be understood, heard and accepted. It’s hard for people to put this pain into words. It’s hard for me! But I endeavor to try.
Be kind to one another.
Peace and painlessness,
It’s hard to believe that we’re sitting on the edge of summer vacation already! As the child of two teachers, I’ve spent my entire life thinking of September as the beginning of the year and June as the end. Then I became a parent and it really solidified that concept. Even more so now that I work in a school! So the end of the year is upon us. What a relief!
Except that it’s not a physical relief. I’m in a flare. The stress of the usual end-of-school-year whatnots joined up with the impact of changing weather and BOOM! My entire body feels done in. I spent far too much time mentally warring with my pain this week. Staring at my hands, as though angry glares would stop the bubble-wrap sensation, stop the shocks. Clearly, I wasn’t thinking clearly.
But I finally got to see my doctor. Arriving at their still new office, I was escorted to an exam room off of a long hallway. The lights in this facility are so ridiculous! I had to take pictures this time. The practice deals with people suffering not only with chronic pain, but also neurological disorders, spinal issues and more. Glaring strips of light every two feet in a long hallway? It’s far too bright, a major sensory overload. And insensitive to the needs of the patients, in my opinion.
I explained the last 6 weeks of symptoms to my doctor. He listened and typed, listened and typed. Click-clacking on the keyboard, every now and again looking over at me. Occasionally, his looks bordered on anxious. Then he’d nod and start typing again. Then he stood up to examine me, doing the usual strength tests. He mentioned, far too casually for my liking, that my calcium had been “borderline low, last July.” LAST JULY?!? No one mentioned that. It was during my summer surgery from hell. (Look back on those blogs if you haven’t read them. I’m a walking, talking cautionary tale about post-op complications). He wants to check my calcium levels, saying that a deficiency can cause spasms. Great. I’ll run right to the lab and get it checked. Or maybe I’ll wait a year. 😒
A YEAR of spasms, shocks and pain, this on top of the usual RSD-related “stuff.” If I could have known, I’d have avoided this. If low calcium is the culprit. That can be fixed. That can improve. The alternative is too much to bear. That there’s something more serious wrong with my hands. There’s literally no point in obsessing about it. I have a lab appointment tomorrow. We shall see.
The doc also wants to do an MRI of my cervical spine. I haven’t had one of those done in years. And, unfortunately, they don’t want me to do an open MRI, despite my intense claustrophobia. Ugh. Even the thought of it. (Shudder). That appointment is booked for next week. Hopefully, it will show nothing. Or should I hope for an answer?
One of the bad things about living with any chronic illness is getting tests done. Most of the work ups ordered aren’t awful, but getting blood drawn is a risk. Every trauma, however small, can set off a firestorm of flaring. And then there’s the rock and hard place of getting results: do I want them to find nothing? Or something to give me an answer? Do you know what I mean?
Waiting endlessly for a diagnosis, a plan, a solution to a symptom/symptoms is awful. Between trying to find the right words to describe your problem and having medical professionals look at you like you’re insane, there’s no comfort. It’s a rotten deal, no matter what. So getting lab work done is a mixed blessing. Maybe they’ll finally give me an answer! But maybe they’ll find another terrifying issue that brings more drama, more pain. OR maybe they’ll find nothing and I’ll go on, suffering forever. It’s a no win situation.
Low calcium isn’t the end of the world. It’s the c-spine MRI that worries me. I’ve had spinal surgery. Let’s just say that it wasn’t the best time of my life. Even the thought of needing something done to my neck scares the heck out of me. But there’s not much I can do, at least until I have the test done. So we wait.
For now, life continues as usual. The one lovely thing is that my daughter is on vacation! And she aced her junior year of high school. We’re so proud of her. She’s a constant source of light for me, no matter how I feel physically.
I carry on, moving forward and taking joy wherever possible. And whatever the test results are, I’ll deal with that too.
Wishing all of you a peaceful, pain-free week.
Be kind to one another.
Peace and painlessness,
I was aggravated today. My pain level is way up and that always irks me. I’ve been trying to keep it together, but that’s not an easy task.
It started after dinner, on Tuesday evening. We had finished eating and started catching up on school stuff. My left hand, which was resting on the arm of the chair, fingers slightly bent, began to spasm. My fingers felt like they were being pulled further in, toward my palm. I quickly stretched out my fingers and tried to counteract the spasms. It sort of worked, but my hand felt weird. Disconnected. Almost a run-over, flat but very painful sensation. My skin hurt. The electric shocks ran from my wrist to my fingertips. It scared me. All I could do was monitor my symptoms for the rest of the night.
Wednesday wasn’t much better. The day passed with the same pain, the same numb disconnected feeling. It’s a bizarre description, but it’s all I have. I spent the evening alternately using my finger stretch bands (see picture) and a tub of therapy putty.
That night, I nearly woke my husband up because the pain was so excruciating. I have no idea what time I finally fell asleep. After more than two hours of non-stop electric shock pains, shooting from my elbow to my fingertips, I lost track of time.
Yesterday started as a good day. My daughter was off for a citywide professional development day. We went for a walk and had breakfast together. It was so nice. But my hand was acting up the entire time. In the early afternoon, the cold in my fingers became so extreme that I had to wear gloves. My skin hurt so much I had to wear long sleeves. I HATE RSD.
Later on, the phone rang. It was my pain management doc’s office. They called to reschedule my upcoming appointment. I was convinced I yelled at the receptionist. My daughter reassured me that I didn’t. This is the third reschedule in as many months. So I said no. I explained why I needed to see my doctor, not a nurse practitioner I’ve never met. The appointment was originally scheduled for Wednesday. She ended up moving me to Monday. So that was a victory. I’ll take one whenever I can.
After I finally climbed into bed, my pain was annoying but bearable. That sums up most of my RSD-related issues, on most days. Annoying but bearable. But then RSD breaks the rules in the cruelest ways, changing the game constantly.
People with chronic illnesses have to make sacrifices and concessions every day. Missing special events, giving up jobs, wearing certain shoes, trying to find clothing that doesn’t hurt. These are things others can take for granted. We can’t. As we adapt to life with RSD, more and more control is taken from us. How far we can walk. How much sleep we get. Will taking a shower be too painful? Getting a hair cut because having longer hair is too painful to deal with, too difficult to manage. (That’s honestly why I cut my hair a few months back. Washing it became so uncomfortable for my hands and arms. It was just easier to cut it shorter.) You name it. It’s unfair and it’s heartbreaking. But we do what needs doing to survive. We do what must be done to keep any control possible.
I’m at a loss as to how this hand/arm thing will play out. I’ve accepted the annoying but bearable aspects of my life. There wasn’t much choice involved, LOL. But the really bad days, they’re not ok. I’ll forever resent them.
If this seems like a colossal whine, it is. I admit it. But try placing yourself in the situation of any patient with a chronic illness. Try to imagine feeling like you’re being shocked nonstop, for hours on end. Or that you’ve got a sunburn that never goes away. It’s ugly stuff.
Monday can’t come fast enough. (I never thought I’d write THAT). We’ll see what he says.
Wishing everyone a safe and pain-free weekend. Be kind to one another.
Peace and painlessness,
This week provided a small rest, one that my entire body needed. Even though there was costume laundry involved, I still allowed myself time to come down from last week’s show.
It’s funny. I spend so much of the school year talking to the kids about the “show at the end of the year.” When it’s over, there’s always a weird letdown. I can’t explain it. Some of the dancers mentioned feeling that way. All of the hours of practice, the classes full of difficult choreography. It’s all finished for the year. Prior to this show, I told the kids to savor the moments, that what seems like thirty hours of stage time is actually only about an hour. And then they’ll be backstage, giving back their costumes in a blink. They never believe me until they experience it.
It’s like life in general. Isn’t it? We always think we have more time, more this and that. More interactions with the people who matter most. Then, for various reasons, that time ends and we’re left feeling lost. It doesn’t even have to be as dramatic as a death. People change jobs. They move to a new location. Graduate from different schools. Change classes. Each of us lives that cycle, over and over in our own lives. And that’s the reason I try to keep looking upward.
We’re forever beginning one thing and ending another, even if we can’t see things that way. Changes fall into various categories: minor, moderate and major. Being diagnosed with any medical condition is a major change in life. If treatments, medications and hospitalizations are required, it’s beyond dramatic. And then, at least in my case, it became a new norm. I spent more than a decade in that cycle. It only changed because my morphine pump malfunctioned. Otherwise, I’d still be on the same path.
That unplanned upheaval required new thinking on my part. It was a dramatic shift in lifestyle. So much so, that I felt lost. The decisions to not replace my pump, to try walking without my cane, these might seem little to you. They weren’t to me. Both enabled me to see things in a new way. It was like getting new glasses and suddenly seeing what the world really looks like. Those changes in my life helped me to find ways to look upward. So much so that I cannot help being positive. I never lose hope. It’s my way of coping. No one else has to subscribe to it. But it helps me through even the worst days.
So when my hands were really bad last week, I tried to focus on what I was still doing despite the pain. I was still working. I made it through the show. I got through the weekend. And on and on. One milestone after another. Before I knew it, four days went by and I was doing better.
During the last few days, my left hand has been acting up a bit. Sore and painful, and bitter cold to the touch. I hate that. Cold hurts. Even on the warm days we’ve had recently, my hands felt like ice. And they burned. But I tried really hard to focus on what was in front of me. Never losing site of my symptoms but knowing that focusing on all of the bad wasn’t going to get dinner made, costumes washed and other work completed. So I strived to look upward.
When I felt as low as possible, I tried looking upward. The act of refocusing my energy elsewhere, almost defiantly, helped me get a lot done this week. It wasn’t easy. But I did it.
I wish it was as simple to do as I must make it sound. It’s not. I know how hard it is at 3 a.m., when the pain is so bad that you want to rip your limbs off. I know, because I’ve said those exact words, hundreds of times. It’s way easier said than done. But the act of even thinking about tomorrow, got me through those nights. Helped me refocus. And, when I felt stronger, I could really distract myself. During a bad flare, we need support. We need to be believed. And we need pain relief. Sounds way simpler than it ever is. Ask any chronic pain patient. They’ll tell you about countless bad experiences. And that makes it that much harder to find hope. That’s the challenge. I try, but don’t always succeed. But I’ll keep trying.
As I write this, my hands are sore. My back is twinging in the way it does before it locks. When that happens, the burning pain gets so intense that I often cannot help crying. It’s too much. But, today, I’ll try to stretch and hope that the twinges will be as bad as it gets.
I keep looking upward. I keep looking toward better days. It’s the way I was raised and the example I’ve tried to set. Even in the worst of times, look beyond. If not from the epicenter of the crisis, then once things calm down. Once things settle, even a little bit. Look upward.
You deserve hope. My wish for each of you is that you have some. That you find ways to look upward.
Be kind to one another.
Peace & painlessness,
Monday/Tuesday: This week is our dance showcase…. I spent the past two days sewing, sorting and glitter-dusting anything and everything that will cross the stage on Thursday evening.
I have the very good fortune of working with wonderful kids. The younger ones are so excited, its palpable. The older kids are ready to debut their senior pieces of choreography to family and friends. And I get to pick costumes and style them any way I want, pretty much. It’s a great job. A challenging one, to be sure, but truly great.
Last week, I realized that this will be my twelfth show with the school. Thinking back to my first one, I was so nervous, terrified of messing up. My mentor and I hadn’t developed the friendship we now share. He was learning to trust me and my judgement. And I was learning his methods and style of teaching. Now, we understand each other with a look. It’s almost scary sometimes, LOL.
Despite new pain, and the fears that accompany it, this has been a good week so far. Amid what appears to be confusion and semi-chaos at times, is a system that works. Would I love to NOT have kids showing up two days before a show telling me that they didn’t find anything for their costumes? Yes. Yes, I really would. But those moments are inevitable, so I plan for them.
Regardless of what happens two days from now, I’m proud of my work, the children and their teacher – my mentor. There’s been a tremendous amount of effort and creativity invested, and it shows.
Wednesday: Our tech rehearsal – when we get to see what the lighting will be like – went better than I could have hoped. There’s something about this day that makes me nervous. Almost like I’ve forgotten something, but I haven’t. I’m almost sure that I haven’t……🤔
[to be continued]
Thursday: this started out as a really bad day. Walking into my dining room, carrying breakfast, my hands just gave up. It happened so fast, I lost my grip on the mug in my right hand & my left (holding a buttered bagel), just flopped. Water, bagel pieces, butter, the plate & mug – it was everywhere. I just stood there, crying. My daughter cleaned most of it up while trying to calm me down. The day didn’t get better, not for a while. I’m not even sure what upset me more: the fact that I’d made such a huge mess or that my daughter had to console me.
Later in the morning, I was holding an iced coffee in my left hand. And then, all at once, I wasn’t. It was everywhere. This started to get really scary. This cannot happen. And yet it is. It’s happening as I write this. My hands, actually all the up both of my arms, feel weak & disconnected. It’s a nightmare coming true.
Forcing myself to refocus on the day ahead: show day! I geared up for the next 6 hours. And that’s when I discovered the missing piece! The forgotten thing. Counting garments for one of the ensemble numbers, I visualized where I’d left the missing balance of shirts. One catch: it was back in my apartment. When the final rehearsal was over, I raced home and found that I’d not only left the shirts there, but that I’d never actually sewn them. Oh joy. There was time, so I quickly made the alterations and headed back to the school.
Show time! The saving grace of this day has been the energy and excitement of the dancers. I loved seeing this show come together. Like a creative jigsaw puzzle of movement. Really, really cool. I tried hard to not think about the mounting pain in my upper limbs. Not the time. Not the time. NOT the time.
The show is over. We all took our bows. Flowers were presented. Another one for the books and it was magnificent! Now, all I can think about it how much pain I’m in. I float home in the rain, gripping an umbrella and bouquets from the kids. I’m numb. Mentally and emotionally numb.
Friday: Today, I didn’t trust myself to hold anything important in my left hand. Today, both hands feel like there’s bubble wrap between the joints. Every time I bend my fingers, I feel popping and hear crackling. It actually gags me. Bubble wrap bones mixed with painful electric shocks, shooting through my hands from wrist to fingertips. Numb pain. Does that even make sense?? No, it doesn’t. But that’s where I am.
I worked today, covering classes for my mentor. The sixth graders worked in small groups, discussing costumes for their upcoming performance. The seventh graders and I talked about last night’s showcase. Part of me was so excited to see the kids. The other part wanted to go home and cry, the discomfort was so intense. I didn’t. Instead, I stuck it out. Even though I was whining and screaming in my head, I’m fairly sure I looked semi-normal to the outside world. After school, I took myself over to the local Starbucks and got a coffee. A lot of our students were there, “Hi Ms. Becky!” sung out in a series of shouts as they realized I’d walked in. It’s nice to see them, a good reminder that my work isn’t done. I can’t fall apart. Well, I can. But then I have to get it together and make sure that everything’s done.
I’m seeing my doctor in a few weeks. It’s awful to imagine losing control of my hands. Earlier tonight, I sat with my husband, talking about – what else? I cried again. I haven’t cried this much since……. well, it doesn’t even matter. It’s like a mantra, “I can’t lose my hands. I can’t lose my hands.” But saying it, even out loud and through tears, won’t change anything. Won’t make it better or worse. And yet, I keep chanting those words, over and over. That would be the ultimate slap, the ultimate insult. Come on. I cannot lose my hands.
Maybe the universe will hear me.
P.S. Saturday: I was about to publish this but felt compelled to add this story. Earlier today, I went to the local grocery store. It’s the nearest one to my apartment. And the one that I detest because everyone is always so aggressive while they shop for their overpriced, organic everything. The thing that makes this store EVEN more annoying, if that’s even possible, is their complete disregard for space. The aisles are about two feet wide. The only doors in and out of this mess are completely obstructed by giant displays of fruit, sale items and flowers. And today, lucky me, there were hamburger buns. I exited the store, trying to navigate between a tall case of cereal boxes and a 3′ x 3′ huge pallet, stacked with baskets of hamburger buns. This thing was on wheels, NOT braced, perched at the edge of the raised sidewalk. You KNOW where this is going. I accidentally clipped the pallet, which promptly rolled off the step, tipping over. At this point, I’m pretty sure I yelled out, “REALLY??” Grabbing the edge of the basket with both sore hands, I managed to pull it back up. Then it rolled off again. See why I think the universe is having a huge laugh at my expense?? Finally getting it back up on the step and being semi-certain it wouldn’t roll, (until the next poor sucker bumped into it), I did the only thing possible: I stood up straight, grabbed my groceries and acted like nothing happened. While laughing hysterically, of course. Best not to draw any more attention to myself. 😂😉
Be kind to one another.
Peace & painlessness,
On Mother’s Day, we took a lovely walk. It was evening and a light rain was falling.
At some point, the rain stopped & I started putting my umbrella down. But I literally couldn’t. The fingers on my left hand were locked in a weird spasm. Unable to release the handle from my grip, I started to panic a little. My husband and daughter were immediately worried, but I had no idea how to reassure them – or myself.
At first, I couldn’t imagine what the heck had happened. Using my right hand, I manually unbent my fingers and felt nerve pain, numbness and something else: the sense that I didn’t have control over my hand. It took a while, but – gradually – I began to get the correct sensation back in my hand. But it lasted most of the night. Terrifying, to say the least. Especially as I enter the final lap of prepping for the show.
On Monday, back at school, attempting to alter shirts for the kids. I was alone in the studio and couldn’t quite hold the fabric in my left hand. When you’ve felt what you believe to be every nerve pain/numbness/weirdness possible, discovering a new one is never good. I cannot lose the use of my hands. I cannot lose the use of my hands. That’s what I kept repeating, as I cut through that fabric. The feeling wasn’t as intense as it had been on Sunday, but it slowed me down considerably. It’s lasted – on and off – the whole week. I’m over it. Enough already. (As if saying or thinking it will ✨magic✨it away).
Typing, writing, sewing, cutting – all affected by this new odd thing. A while back, I ordered exercise tools similar to the items my physical therapist had me using in the office. Clay, little finger stretchers, light hand weights. This week, I traveled around with some of them, taking breaks to keep my hand moving. Hoping the spasms wouldn’t start up. I have no idea if it helped or hindered, except for the fact that it made my hand more sore. I don’t know. My hand feels oddly disconnected at my knuckles. Even that description doesn’t do it justice, or make sense.
I’ll be seeing my doctor in a couple of weeks. We shall see what his opinion is on this latest bit of fun. Honestly, as I edit this, I’ve never seen this many typing errors. I’m on my fourth round of rewrites, so I think it’s time to call it.
Of course I’ll follow up on it. But for now, the spasms – and my fear of them – have the advantage. (But not for long 😉).
Be kind to one another.
Peace & painlessness,
I’ve started and stopped at least four different blogs this week. For some reason, I couldn’t settle on any of them. That’s pretty much how the week went. At the moment, I’m prepping for our spring dance show. Normally, by this time, I’d have sewn, glittered and glued my way through at least three numbers. But not this time. There’s too much to do and not enough energy to do it. It could be because I’m feeling stressed about the show. It might also be that I’ve drawn a blank on how I want certain pieces to look. It’s also possible that my creative side feels as beaten up as the rest of my body. I’m crashing. Hard.
Over the past week or so, I’ve been having trouble with my right knee and right wrist. After struggling with my weird hang ups about using the prescribed anesthetic creams, I broke down last night and tried the lidocaine ointment on my wrist. It did help. Ok, ok. I’ll be using it again. The doc was right. My husband was right. I’m stubborn. Big shock, I know.
On a different note, today is Mother’s Day. I’ve decided to lay low, sew and regroup. Probably more of the latter, to be honest. The next two weeks will wind up a blur, but I’ll love it. I always do. I’ve been thinking about the future – where my studies are meant to take me, what I really want. I’ve thought about how much I love working with the kids. There’s so much involved in this, not merely picking a costume. It’s thinking about how they’ll feel wearing these costumes. Foolish? Embarrassed? Pretty? I have to take all of their feelings into account. Their growth and emotional well-being. It’s complicated. But wonderful. Maybe the fact that I’m a mom helps, especially having a daughter. Actually, it’s definitely helped me.
I have to buckle down and make some progress. Although, with my wrist being swollen and sore, the chances for that aren’t great. So, I’ll let myself have today. To enjoy my beautiful daughter. To count my blessings. And begin again tomorrow.
Be kind to one another. And a very Happy Mother’s Day to all. 💐
Peace & painlessness,