[Disclaimer: this is my opinion. Nothing more, nothing less.]
A few weeks ago, an article in the New York Times caught my attention. The author, a former chronic pain patient, wrote about his medical difficulties and his “cure.”
He details his double life: one of a working professional, hiding his injuries. The other of someone who could barely sit or walk without agony. After carefully letting the readers in on his secret, he talks about his redemption. A program that ultimately helped him escape the agonies of daily pain.
Naturally, as someone who’s spent her entire adult life in various degrees of pain, I wanted to know how he did it. The solution – boiled down to the bare minimum – is that pain is all in our mind. That we have the ability to believe it away – ok, that’s a minimized version of the treatment.
I read this article at midnight. The next morning, I re-read it, to be certain that I hadn’t misunderstood. He wants me to believe that I can just magic it away, with carefully planned meditations and desensitization therapy? So, the damage to my spine, can be willed away? If only my doctors had told me that! I’d still be a nurse! I wouldn’t have been driven out of my career.
There is NO end to how angry this made me. While I am genuinely happy for the author – I don’t want anyone to be in pain – this article lacks a complete picture. It’s one case/one success story/one type of treatment, not the entire caseload. And that leaves unacceptable gaps in the pain management story.
The problem with articles like this one is that it sends a one-sided picture out into the universe. That people don’t need medication, they don’t need anything but a strong desire to be well. It sets a dangerous precedent that the “opioids are bad!” folks love. It sends a judgmental message to the people who genuinely need medications. And clearly it puts people like me on the defensive!
I’m not saying that having a good attitude won’t help, because it does. My readers know I’ve been saying that on my blog since day one. But I wouldn’t ever preach that a happy thought cures all. It’s simply untrue. I know that desensitization doesn’t quite work that way. I’m feeling prickly today. 😖
For the RSD community- (and I can only speak about RSD, no other medical conditions) – our problems involve every body part, every function. There are warriors coping with symptoms you wouldn’t wish on your worst enemy. Skin burning, difficulty swallowing, muscle wasting, immobility. The list goes on and on.
And while some folks will disagree with me, which is their right, I worry about the audience reading this article. I worry about people who have the power to limit access to medications reading this. I’m concerned that this will further pit the medical community against chronic pain patients. And we can’t afford that.
This simplifies a complex subject. This is, in part, why we are in the midst of a war. The people who genuinely need medications cannot get them because others abuse the same meds. Many people in my groups talk of being dropped from medical practices without warning. Still others post about having their prescriptions decreased, having to make half of the amounts they used to receive, last a month or more. This is insane. I know people who’ve greatly benefitted from programs that have encouraged healthy eating, exercise and meditation. Some have even been able to stop taking their prescriptions altogether, which is awesome. But as one who hasn’t participated, I can’t comment personally.
I’d love to speak with the author. To congratulate him on his success with the program. But also caution him. It’s not appropriate to say “I’m cured! Everyone can do it if I can.” It’s way more complicated than that, as far too many of us know.
This is just my two cents. I got fired up and ended up firing up members of my group by sharing the article. Sorry about that! But we’re all forced to be fired up 24/7. The opioid war in this country has many more casualties than some want to acknowledge. I could be one of them. So could my fellow warriors who have not already been burned by all of this.
Of course addiction is a problem! My heart goes out to all who suffer with it. But I don’t want to be treated like a criminal. I certainly don’t want to be accused of trying to take advantage of my doctors and the system that truly helped me. And I have been accused. All of us have.
And patients have even turned on each other. Some who have opted not to use medication – and thankfully don’t need to do so – have called the rest of us addicts. They said we “haven’t tried” to benefit from life without medications. It’s simply not true. And we certainly don’t gain anything from beating each other up. What works for one person, or a million people, won’t work for every person. And it’s dangerous to imply that it will. It’s cruel.
Words may not hurt me. But they might do a lot of damage to my fellow warriors. And I can’t sit by and watch that happen.
Once again, this is just my opinion. To all of my fellow warriors: whichever method you choose to keep yourselves well, DO IT!! I hope it works for you & keeps you pain-free. ❤️
Be kind to one another.
Peace & painlessness,
Hello and happy Thursday!I know myself to be many things. A wife and mother. A daughter and sister. A friend.
I’m a writer. I create things, both at my sewing machine and with words. And I’m human.
As I battled between the two blogs I was working on for last week and this one, I was battling a bit with myself. At this point, during any long break, I start to sink a bit. Without the norms of a structured day, (school is out! Cue the strains of Alice Cooper’s summer anthem), I tend to feel lost. My daughter is home, there is plenty to do. But my energy ran away from home and doesn’t seem to be coming back!
During my last visit to the pain doc, he encouraged me to try lowering the dose of one of my meds. He instructed me about the how’s, and I know the why’s, (I complained of becoming more forgetful and foggy during the day). It’s the actual doing that made me nervous.
But, for the first time ever, I actually listened to him and tried it. This was not a successful attempt. Within a day of changing the dose, I started to have problems with both feet. Since I set my medication trays up days before I need them, I’d actually forgotten about the pill change. I thought my feet were just sore. Then my left hand started up. Followed by my entire arm. And my back. You get my point. It wasn’t pleasant.
Without saying anything to my husband until things were becoming a problem, I’d made an effort but it’s just not working. He reminded me that it doesn’t make sense to stay in pain. It’s not like withdrawal, where things will get better once your body adjusts to being without meds. I’ve gone through that, he did it with me, and it was awful. But it got better.
I ended the experiment by taking the missing dose. And actually slept for the first time in weeks. That’s not an exaggeration. I actually haven’t slept more than 20 hours in the last two weeks. Maybe it’s the summer, maybe it’s stress. Who knows? And knowing the reason doesn’t necessarily make it less of an issue.
In the end, I’ve decided that this is my blog post. I’ve allowed myself a pass on missing last week. I’m forgiving myself for not having a more exciting one for this one. It’s ok.
Having RSD means that I constantly have to make allowances for what can and cannot be done. As well as I’m doing, and trust me when I say that I am a million miles from where I was 14 years ago, I still struggle. There are great days and awful ones. There are times when I can just about get dinner together, when I can just about get the dishes washed. And that’s ok.
The other thing I am, if nothing else, is hopeful. You all know that. We can all have our good and bad days. We can – and should – forgive ourselves. No one is harder on us than US. So why shouldn’t we kinder to ourselves as well?
Look around. Are you doing your job? Are your kids ok? (Mine is currently studying for the SAT between binge-watching episodes of “House of Cards.” She’s FINE.). Chores will get done. Life will go on.
And I will be fine. And so, I hope, will all of you.
Be kind to each other. And maybe most importantly, be kind to yourselves.
Peace and painlessness,
Last Thursday was the one year anniversary of my pump explant surgery. If you’ve followed along this crazy journey, you know that my pump broke in January of 2016. Instead of having it replaced, after a brutal period of withdrawal and amped up pain, I decided to wait a few months. Basically, after not dying from said withdrawal, I began imagining a life of not needing monthly pump refills – each consisting of being stuck in the abdomen multiple times. I imagined a life beyond having morphine manage my RSD pain. For those of you who (thankfully) don’t deal with a painful medical situation, I’m absolutely certain that it sounds strange. I thought it did too, until it didn’t. That pump saved my life.
Anyway, the pump came out. Despite initial complications, my body overcame the post- op nonsense and started healing. And not just physically. I began to heal emotionally. This year has shown me a whole new aspect of life. It’s helped me realize that there’s more to be done. Mainly that my life won’t consist of being in the background of my own story. Anyone can relate to that feeling. Whether I’ve accurately described it or not, I can’t be sure. For many years, I was just grateful to blend into the background. Now, I feel like the scene in “The Wizard of Oz” where everything changes into technicolor. I won’t live under the radar any more. I’m not even sure that’s possible.
Not long before my operation, I’d started classes at FIT, (Fashion Institute of Technology). My second year will begin in September! I realize that I’ve nearly finished all of the core classes. Now I can focus on the electives specific to my major, which is wardrobe technician. It wasn’t long ago that I doubted my ability to handle being back in school. Isn’t that what we do? We doubt ourselves into corners, into what we deem impossible impasses. I think mine stemmed mostly from spending so much time and effort trying to keep control in my own life. RSD strips away SO much of our ability to make choices, because RSD steers the ship. “I had planned to go out, but I’m in so much pain.” “I’m sorry I can’t meet you, I’m too tired.” “Mommy can’t play right now.” I remember telling my toddler, who was the gentlest little snuggler, that I couldn’t hold her because I had a boo boo arm. She’d stand next to me and give my knee the softest “pat pat.” Then she’d say “I’m sorry mama.” SHE was sorry. That broke my heart. Sometimes I’d hold her to spite my pain. Like, “Take THAT RSD! You’re not going to keep me from my baby.” But RSD makes a lot of the choices for us, despite our best efforts. So we must fight back, even for what seems like the smallest victories. I think every victory is a major one, because of the enormous effort required to win them.
As the year progressed & I traveled further away from July 27, I dealt with increased pain in my hands and arms. This will forever terrify me because I sew. There are things that have to be hand-sewn and any struggle sets me back. But, once again, I powered through. It’s like a battle, between me and my RSD. I’ll likely fight it forever.
And there will always be times when there’s a quiet period, a lull, and that really scares me. Things will be mostly ok and then – seemingly out of left field – they won’t be. But that’s par for the course. That’s part of the “chronic” in chronic illness.
I remain grateful, through all of this. Things could have gone differently with that operation. Things could have been worse. But they weren’t. I survived. And I believe that, most of the time, I’m thriving.
It’s kind of funny, my pain doc always asks me about the shows I’m working on. He even remembers that I work with dancers. As we chat, he reminds me to rest and take care of myself. And he’s constantly telling me to delegate. I merely ask, “Have you met me?!?” LOL.
When I was in the hospital for the pump trial, three years prior to actually getting one, I tried explaining to my daughter – who was very young at the time – what a pump was. After telling her about it, she got really quiet for a few minutes. Then she asked, “so you’ll be like a robot?” I can’t remember exactly how I answered her. But I do recall trying not to laugh and cry when I did.
Having the pump and all of the hardware in my spine made me bionic, at least that’s how I joked about it. So now I am semi-bionic.
If anything can be learned from this journey, it’s that we’re more resilient then we believe. Even if the balance of that resilience moves back and forth on the scale between “bad ass” and “not so much.” I’m ok with that.
Wherever you are in your journey, I wish you technicolor strength and courage. Celebrate yourselves because it’s not easy living with RSD – or any other chronic illness. Heck, living in general isn’t easy.
In the meantime, until you can really do it for yourself, I will celebrate each of you. And thank you for the support you give me. I’m so grateful. On to year two!
Be kind to one another.
Peace and painlessness,
A fellow warrior recently posted a powerful song to the group. “She Used To Be Mine,” by Sara Barielles, written for the Broadway musical “Waitress.”
The lyrics detail traits that the singer feels she’s lost, seeing reflections of who she once was. Isn’t that the case for anyone who’s lived long enough to be aware of changes in their lives? Substitute “shoes and this apron” for “meds and these symptoms”, and “patrons” for doctors, you’re a patient.
We readily find ourselves in the pages of books, the lyrics of songs, the paragraphs of a blog. Making connections to specific people or experiences – at all stages of our lives – is part of the human experience. Just observe the behavior of pretty much anyone, when the songs “Eye of The Tiger,” or “I Will Survive,” begin playing. No matter who we are/where we live/what we do, we know that “Rocky” is a story of survival, of finding the strength to get back up when it all seems pointless. Same thing with Gloria Gaynor’s powerful anthem. I don’t know anyone, (especially the women in my life), who doesn’t stand up and belt out every lyric with such depth of feeling, you’d think we were actively throwing someone out and starting over.
Why? Because all of us share much more than common interests. We share the same space on this planet. We fight the same fight, even though it’s personalized for each of us. I see so much of my own experience in “She Used To Be Mine.”
If someone asks me about my pre-RSD life, I’m nearly at a loss for words. I remember certain things: The joys of shared childhood memories, laughed about with my family. My teenage years. The exhilaration of meeting and dating my husband. Our wedding. The birth of our daughter. My work as a registered nurse. But then all of this medical stuff happened. It ran over and through me like a freight train. It was get up and survive or rot where I was. My husband and daughter gave me cause to rise. And so I did.
When I look at myself in the mirror, I see shades of the person I used to be. Catching glimpses of her when I pass certain places, see certain people. It’s sometimes like my life has been lived in two segments: before and after being diagnosed with RSD.
The lyrics about being “broken but won’t ask for help,” are so true. I argue with everyone, trying to prove that I can manage on my own: grocery bags, packages, anything. But it’s all in an effort to prove something to myself: that I’m still here, still valid, still fighting. It’s sort-of an ongoing battle that plays out daily, especially with my daughter. “Mom, I know you can carry them, but can I please take the grocery bags?” Actual quote.
As patients, we strive to find normalcy. We desperately try to reinforce that we’re not invisible, that we matter. We know who we were before diagnosis. And we’re also acutely aware of the things we can’t do anymore, of the people we can no longer be. Because now we wear a different label, carry new baggage.
“She is good, but she lies.” We quickly learn to answer the simple question “how are you?” with the equally simple “I’m fine.” Why? Because most people don’t want to know, don’t want to hear about our bizarre nerve pain. In my case, I just adjust my answers depending on who I speak with – especially neighbors. People with rare conditions like RSD are often put on the defensive, and not just with friends and family. We’ve all had bad interactions with the people meant to be treating us. I’m certain that nearly all of my warrior friends can recall at least one negative experience they’ve had with medical “professionals.” I put that one in quotes because there are more than a few doctors, nurses, etc. who should NOT be allowed to work with patients. As a nurse, it horrified me to be called a “freak show” by an ER resident. But it happened. It couldn’t be unsaid or unheard. Seeing him grovel and apologize – after my husband said that we’d heard him – was satisfying. At least I can laugh about it now…. for the most part.
“She is messy but she’s kind.” I wish I could blame RSD for being messy. It wouldn’t work though. I’ve never been organized, just ask my mom about my room back in high school. The room I shared with my younger sister (poor kid😬). Between posters of heavy metal groups and my disaster of a mess, she had to put up with a lot. (Yes…. let that settle in….. I had every surface area – floor to ceiling – covered in pictures of Guns N’Roses, Bon Jovi, Skid Row, Poison, & Metallica, just to name a few.). LOL.
As for being “kind,” I can only pray that people will look back at my life and say that I was. I try to be. Each time I worry about whether I’ve been a good example, I have only to look at my daughter. She’s about the best affirmation ever. Empathetic and ethical, she is just wonderful. (Pause for a momentary pride break. I am seriously proud of my amazing daughter. Ok. Thank you!).
The only lyrics I’ll dispute are the ones about being lonely. Yes, I have wonderful people in my life. But I’m thinking about an extraordinary group of people – my fellow RSD warriors. With each of them around to listen, reassure and understand, I am never alone. I hope each of them knows that they aren’t alone.
There are those of you reading this who will find solace in Sara Bareilles’ beautiful song – people who thankfully don’t deal with medical stuff every day. Her song isn’t about being sick. But we all find pieces of ourselves in every song that we love. That’s why we love them!
Enjoy the music. We are complicated beings, living ever more complicated lives. If lyrics bring us strength and comfort, I say raise it up. Blast that song! Find strength, power, courage… even hope.
Be kind to one another.
Peace & painlessness,
As I publish this, I’ll be celebrating my 44th birthday. I don’t obsess over age the way I used to. And certainly not in the way most would imagine.
When I met my husband in the summer of 1992, I was 19. Desperate to figure out who I was and what I should become, I was a bit lost. Somehow, I decided that I needed to be older before anyone would take me seriously. Before health and meds aged the heck out of me, people used to tell me that I looked “too young.” Too young to be a nurse. Too young to be a bride. And on and on. It was such an insult! My patients, professors and colleagues were constantly calling me “Little Miss,” “the little one,” (throwing digs at my age AND height as a two-for-one) and other fairly innocent teasing names. No one meant anything by it, but it infuriated me to no end. I wanted to grow up! Faster than real time would allow.
I remember telling my husband, “When I’m 21, people will have to take me seriously.” Ugh! When I think of all I DIDN’T know at 21! LOL. But it seemed to be a grown up age, at least from where I sat. Then it was 25. I thought, for sure, everyone would have to respect my opinion when I was 25! And it wasn’t even like people didn’t! But when you believe yourself to be inadequate, you imagine everyone else does too. So, 25 arrived and then everything changed.
I’d just graduated from NYU & my husband planned a trip to Disney. It was May. While we were in Florida, I began to experience swelling in my hands and overall fatigue. I thought I was just tired from the stress of graduating. I’d already found a job, things were going well. But physically, I felt….off.
My new job was a bit crazy but it was exciting. That July 4th, we decided at the last minute to go to Cape Cod. After snagging the last available room, we packed and set out for another adventure. One afternoon, we were sitting in front of a restaurant, waiting for our table when I felt a bug bite. I thought it was a mosquito. Turned out to be a tick, though I didn’t know it at the time.
Back at work the following week, I’d been in my boss’s office. I was leaving the room when she screamed and lunged at me, grabbing my arm. At first, I had NO idea what the heck she was going on about. But she dragged me to a mirror and showed me rings, starting at the elbow and working their way up and down my arm. A hard to see bullseye rash. Suddenly I was being placed in a car and taken to another office for treatment. It was bizarre. But I’m grateful. They caught the Lyme quickly enough to treat. Crazy though the whole event was.
But that was how 25 kicked off. And, gradually, my health didn’t get better. I had long periods of feeling fine. Then I’d hit patches of flaring that knocked the wind out of me. Finally, I saw a rheumatologist who diagnosed me with lupus. The meds made me feel better. She’d treat flares with prednisone. And I seemed to be ok.
Gradually, I stopped obsessing over my age. It was odd. Whenever the topic would come up, someone was wishing they were younger. I’d remark about the days when I wanted to be older. Everyone would look at me like I was crazy.
In the summer of 2003, I was injured. Heel spurs and then a misstep. Everything changed again. RSD. It’ll be 14 years this September, since my diagnosis. Spending all of this time dealing with meds, doctors, hospitals, procedures…. it all feels like life on a hamster wheel. Days and months started to blend and blur, practically indistinguishable from each other. I didn’t really do anything to change that view, mainly because I didn’t think it could change.
After the pump broke, I was very aware of time passing. Setting milestones that I was trying to reach without the morphine. Then, nearly a year ago, the pump was removed. Suddenly conscious of chances I wanted to take, opportunities I didn’t want to pass up on. And time. But not in a negative way.
Naturally, I thought about all of the years spent walking around my life in a way that felt safe. I was terrified of rocking the boat. Dealing with pain, procedures and medical stuff all the time, made me want to simply blend in with the background. I worried about falling, about any back pain had after the spine surgery. It was all on a constant loop in my head. I think I missed a few things, being so focused on NOT doing anything to further damage my health and well-being.
These days, I look at my life with gratitude. I still deal with medical stuff. Pain, stress, meds. But I embrace my life in a way that wasn’t possible before. Looking at life through the lens of motherhood, I’m watching my daughter contemplating her future. And it’s wonderful. As a student myself, I’m seeing the future in an entirely different way. And being able to work with young students as a substitute teacher and their costume designer….. that’s a blessing.
Time is passing regardless of how we’d like to slow or speed it up. Now I’m focused on not wasting any of it. I wish the same for you.
Be kind to one another.
Peace & painlessness,
This week, I’m traveling with my family. This time last year, I was preparing to have my medtronic pump removed permanently. I’ve been thinking a lot about where I was a year ago, before the pump explant. Trying to capture how I felt from then until now isn’t as simple as it seems. So I started to look back at the entries leading up to the surgery, and decided to re-post “I don’t want it back,” from May 6, 2016. It’s perfect because the decision to remove my morphine pump altogether – and not replace it – was incredibly tough to make. But I realized, it was time for a fresh start. It was risky but so worth it. Nearly a year later, I can say that I made the right decision.
Here’s to knowing where we’ve been, and where we hope to go. It’s been quite a year.
I Don’t Want It Back
Earlier this week, I woke up and went about my usual routine. Except something was different. Before I left for an appointment, I checked my appearance and came to a decision: I want the pump out. No going back now! I mean, I actually could change my mind. But I won’t. Not this time. Not now.
Here’s why: Over the last few months, I’ve made reference to feeling like I’ve awakened from a eighteen-year nap. I count the initial lupus years in that time frame. Dealing with disabilities changes everything. There is so much lost – time, health, everyday joys and even people. I’ve been lucky, my family has been with me through everything. I’ve lost a couple of people I called “friend,” but realized that they ultimately were not meant to stay in my life. That’s ok.
In addition to the obvious physical issues that arise when someone is “sick,” the patient goes through emotional and psychological peaks and valleys. Depression. Anxiety. All of it. I was no exception.
After I gave birth, I lost most of my pregnancy pounds. But a few years later, when pain became my constant companion, mobility was difficult. I didn’t move as much as I should have and eventually gained a lot of weight. It wasn’t a good time, on a number of levels.
It took Weight Watchers and sheer will to help me lose 60 pounds, in the years prior to my major surgeries. Right before the pump implantation, I read all about how morphine can contribute to weight gain. Some small part of me denied needing the operation because I was terrified of gaining it all back, among other things. In the end, pain made my decision for me. To the O.R.! Some weight gain was inevitable, but I managed to lose a few pounds here and there over the years. Not enough to make me value what I saw in the mirror, though.
Obviously, I had clothes that fit me during that time. I’m a jeans girl, I wear them pretty much every day. Looking through my dresser for donation items last week, I realized I still have all of the jeans from when I was much heavier. Something worried me about getting rid of them. So each time I packed up clothes to give away, the jeans would return to the wardrobe.
My sister, Chrissy, gave me a Fitbit recently. It’s motivated me to walk a lot more and move as much as possible. I’ve started losing weight again. I actually had to order new jeans!
Anyway, I bring up the weight issue because as I’ve lost some, I’ve become happier and emotionally lighter. Cleaning things out of my closet made me realize that I’m finally willing to get rid of the things that don’t fit, items that might have given me a backup plan. “If I gain weight again, I’ll still have my old stuff.” It’s an excuse. There is tremendous fear involved in this process. This is how I’m viewing my pump.
Having the implanted device fail was horrible. The entire experience was a disaster, especially withdrawal. I could have easily had the pump replaced when I was ready. But stepping back from the situation, as I was forced to do, was the best thing that could have happened. I absolutely see that now.
I’ve learned to live without the pump, despite fearing the unknown and the pain I’m still in. Somehow, the universe felt it appropriate to give me a second chance at really living my life. Not merely existing in the background of it any longer. It’s impossible to explain what that feels like. I will say, however, that I cannot remember being as clearheaded as I am right now.
I would rather deal with whatever lupus and RSD throw at me then lean on the old backup plans. In this case, by retaining the broken device, I was able to use the security blanket of, “if things get too bad, they’ll just replace the device and use the leads that are already placed in my spine.” But I don’t want it back.
I don’t want it back. What a revelation! I am a fighter, a survivor. It’s funny the way that illnesses help us realize how strong we actually are. When circumstances are lined up in exactly the right way, we find out tremendous things about ourselves.
Admittedly, fear forced me to make a lot of my medical choices. Especially as a mother! I was always thinking about my family. I don’t even remember the details of certain procedures and meds, the trauma of them forced me to block them out. Side note: at some point, I want to see ALL of my medical records. But not now. One needs to be prepared for that level of WHAT THE HECK?!?!?!
Anyway, a few months back, at my pain management doc’s office, I was asked what I wanted to do about the pump. What the heck did I want? Leave the pump in? Take it out? Get a new one? My answer was simple: I’d know in a few months. In that timeframe were two milestones I needed to pass, then – and only then – would I know if I wanted, or needed, the pump back. The milestones were the professional dance costume job in April and the middle school show this June. The first went really well. I survived! The next is rapidly approaching. And I’m fine. (Check back with me in June, LOL).
The goal now is to ditch the pump sticking out of my side. Did I not mention that this hockey puck-sized device sits below my ribs on the left side of my abdomen? It’s superficial so it can be drained and filled. If I was someone who wore fitted clothes – I’m not (yikes) – my style would have been seriously cramped. But, jokes aside, I don’t need the reminder of where I’ve been. This gal is well aware.
Same me, just wide awake and ready to really live.
Peace and painlessness,