Being human, posting realities……. 

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,
Beck❤️

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A year in the life of a semi- bionic woman or “year one without the pump”………

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, 

Beck❤️

Hello old friend…. finding ourselves in the words…..

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,

Beck❤️

Years…..

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, 

Beck❤️

A trip down memory lane….. 

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.  

Be well.  
Peace and painlessness, 
Beck❤️

Sharing our stories, our truths……

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 – and far 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, 

Beck ❤

End of year relief (without relief), bright lights, and mixed blessings……. 

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. 

They’re on the floors and the ceiling! It’s too bright, too much.

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, 

Beck❤