Confessions of a chronically pained, chronically hovering mom……..

I am a nag. Well, more of a hovering worrier. That sounds slightly more positive. “Do you need anything?” “How are you?” “What’s wrong?” “Tell me what’s happening.” “Why do you have a weird look on your face?” 

I can’t help it. I’m, of course, referring to my teenaged daughter. She’s an only child and I have a need to “fix” and “help.”  Even when I’m not actually fixing or helping the situation. It seems that I have mentioned this before. It’s a bit of a personal epidemic for me. 

As a mom who was diagnosed with multiple health issues before and after my daughter was born, I’ve had to invent a new parenting model for myself. It wasn’t easy for my husband, our daughter or me. And the outcomes weren’t always good. There’s the ever-present, every-parent-has-it guilt. Whether it’s about spending too little time in the playground or not having enough energy to play in general. It’s torture to see your child sad about what you can’t do, when all they want is to spend time with you. I could sing and read to her, but running around in the park didn’t happen. It couldn’t.

Thank God for my husband, for a million different reasons. He took her to the playground, to ride her scooter, sleigh riding. They’ve always had great adventures. He brought her to friend’s houses, picked her up. The list goes on and on. 

Each stage of growth for her meant that I had to grow & change as well. When our kids are babies, they need everything from us. But I think life presents more of a challenge as they age. We’re forced to learn when independence must be encouraged and when to step in. That’s something I’m still struggling with. Mostly because she’s an only child. Have I mentioned that, at least 200 times? (Feeble attempt to justify the hovering. 😬). But when you combine normal parenting guilt with a hefty dose of “sick mom” guilt? It adds another layer of “oh nooooo” to an already tough situation. 

There was a moment at the first college we visited last week, when I wanted to say, “go on without me. Save yourselves!” This happened as we were walking up a hill so steep, it reminded me of San Francisco! And the headline blaring in my guilt-ridden head was that I’d already ruined the day and we hadn’t even started the tour! An irrational notion, for sure, but that’s what I felt at the time. It was tense for a little while, I had to stop more than once. But we all made it to the top and had a great visit. 

And since I’ve brought up San Francisco, I’ll share another anecdote. During a visit there two summers ago, we ventured over to the Golden Gate Bridge. After we arrived, we decided to be brave and walk across. If you’ve been there, you know how windy it gets. Well, we started this trek, walking single-file. I was the last one in our line and kept thinking that it was a bad idea. It was freezing and the bridge was vibrating. But I refused to end their fun. I was not going to be the first one to change course. And, mercifully, I wasn’t! All of a sudden, they decided we should turn back. I felt a mix of strange relief and major joy that I hadn’t wrecked another plan for the family, being “sick mom” and all. It was way too windy and we all lost our nerve. But that was then. Now back to the present! 

Regardless of any fatigue or pain I felt during last week’s road trip, I wouldn’t have missed any of it for the world. This is for my daughter. And that’s everything to me. This is HER time! HER future.  Not long from now, I’ll just be a recurring guest character in her life story. She’ll be making things happen for herself: choices, mistakes, plans. And that’s exactly as it should be. 

So, while I can, I’ll hover, (even though I’ve made promises to multiple people – including my daughter – that I’ll try not to), and guide her through the various obstacle courses life brings. I know she’ll still ask for my advice, even before I’ve nagged her into it. LOL. 

Nothing will keep me from participating in my life, or my family’s, in whatever way I can. Not RSD, lupus, or anything else. Not even ridiculously steep hills. Because, ultimately, life is a ridiculously steep hill. We’ll just keep boosting each other up as we go. If it’s slow going, I’ll just meet you at the top. 😉

Be kind to one another.

Peace & painlessness, 

Beck❤

They have easels!

[Post disclaimer: this is about our first college road trip. My daughter hasn’t decided on her list just yet. To respect her privacy, no schools/locations will be mentioned by name.]

Saturday:

Packing, planning. Today we’re getting ready for another great adventure. This one is going to be BIG. I think it’s the biggest – or at the very least the most important – excursion we’ll take. Welcome to College Road Trip, #1! 

As I double check details on the itinerary, I can’t help but think about our daughter’s first day of Pre-K. We brought our baby girl, dressed in one of my favorite outfits: little wide-legged jeans and a white peasant style blouse. It had tiny embroidered flowers on it. Her hair was bobbed, with bangs. She could not have looked cuter. Anyway, there we were. Parents nervously milling around the edges of the classroom. Our children moved from brightly-colored station to brightly-colored station: pretend play, blocks, books. Every now and again, she would ask us, “is she my friend?” “Is he my friend?” about her new classmates. 

A little while into the day, she spotted what would ultimately play a huge part in her story thus far: “They have easels!” Her smile. As the teacher handed her a smock and a paintbrush. The joy on her face! “Look at my picture! I’m making it for you.” Every once in a while, she’d stop and look back at us, smiling and talking to the little girl on her left. 

And that was that. I knew she’d be fine. ❤

Sunday:

My husband hoped to have us out the door and on the road by 7:30. We were locking our front door by 8:30, waaaaaaay better than I ever thought we could manage. Of course my suitcase was THE most overpacked, ridiculous and super heavy of our three bags. My husband never complains though. I could open a Walgreens store out of my suitcase. It’s beyond silly. But I have this fear of not having something we need, that we won’t easily find a store to get the item. So I stock up for our trips like there’s no tomorrow. (Sigh). Meanwhile, everyone uses most of the “stuff” I bring, so it never goes to waste. Maybe I’m just a brilliant suitcase whisperer! 😂 Maybe I’ll just keep telling myself that, LOL. 

We arrive, after just a few hours of very little traffic. 

We spend the evening walking around the town, noticing details on houses and local businesses. She seems at ease, taking it all in. I imagine the conversations going through each of our heads. “Can she see herself here?” “What would it be like to walk around here, in different seasons? At night?” “Will she be happy here?” Ok, these are the thoughts in my head. I admit it. 

I don’t know the answers. I’ll have to confer with the imagined conversations in their heads to know for sure. But I can say this, it was an overwhelmingly positive evening. 

Monday:

School #1. Impress me! Actually, impress her. Wow her with your courses and plans for her future. 

I want everything for my daughter. As someone with a chronic illness, I can honestly say that RSD robbed me of many moments with her. The pain, the fatigue – all of it affected my parenting. So, now, as I look at this young woman walking alongside me, I’m desperate to say to our lovely tour guides, “If you’re lucky enough to get her, make it amazing.” But I can’t. So I observe and listen and take mental notes along the way. 

Another good day. And, in the morning, we’ll be off again. 

Tuesday:

Another city, another show. I mean school! I mentioned to my husband that I felt like a band, going city to city and state to state. It’s a little bit crazy! Except we’re our own roadies, and that’s not fun. 

What IS fun, however, is exploring this new local with our gal. She hasn’t been here before. It’s so cool to introduce a favorite place to her. 

We ate delicious meals and managed to find  a nice Panera Bread. It’s become our anti-road food place. We’ve been on long car trips when we could only find the basic fast food and easy meals. By the end, we all feel kind of gross and can’t wait to eat better things. This time, Panera Bread came to the rescue. Lighter meals, fresher food. It’s better all the way around. 

We take mass transit to the school. Initially, none of us felt sure of it. But, after taking a great tour with a really sweet student, all minds were changed. I’m so glad we spent more time there. Who knows if this place will make the cut?? 

Wednesday:

Today we opted to really make the trip count by visiting TWO schools in one day. Both were incredible. We heard a lot of information in both places. I feel exceedingly well-informed about colleges taking a “holistic approach” to accepting new students. That is a phrase we’re hearing a lot this week. Basically, they’re not relying on test scores alone. They’re taking everything about our kids into account. I love that. Test scores don’t tell the whole story about a student. They just show whether or not someone can take a test like that. This is just my opinion. 

All of the walking is taking a toll on my right knee and back. I’m so sore. We’ve managed to take every set of stairs on each campus, for three days. At least that’s what it feels like, LOL. And the rain – during our walk around both campuses – well, not even bad weather could ruin this wonderful day. 

Bless you Panera Bread! And our friends at the local Starbucks. Coffee! Coffee! Coffee! 

Thursday:

Today we drove. And drove.  And managed to see signs saying “Moose Crossing – Stay Alert.” Seriously?!? We are officially NOT in Kansas anymore. 


The adventure continues…… 

Be kind to one another.

Peace and painlessness,

Beck❤ 

(Thud)

This week. Wow

All of the shows went really well. The kids were fantastic. After Friday evening’s performance, they gave exquisite flowers to all of the adults who assisted with the production. I was called onto the stage and given one of the loveliest bouquets I’ve ever seen. It was very sweet and truly appreciated. 


I had to switch gears quickly though. Saturday and Sunday’s concerts were upon me. My daughter went with me on Saturday, which was awesome. We arrived early and walked around the neighborhood. It was cool but weird passing offices I’d worked in, when I was still a nurse. I’m glad I got to show her though. 

After returning to the 92Y, she snagged two great seats and I did final makeup and prep for the dancers. The costumes looked better than I imagined they would. And the dancing! Well, it was an epic debut of the new work. It was a great weekend for dance. And my client was happy. 

After Sunday’s show, I raced home to attend the wake of a family friend. She was a kind and generous woman whose life intersected with mine for as long as I can remember. When I was a teenager, she and her husband tailored my prom dresses. I have fond memories of standing on a chair in their dining room, as she worked on the hem of my beautiful, green Jessica McClintock dress. Oh, I loved it! It was very special. The night of the prom? Not so much. But the dress? The dress was fabulous. 

The impact of the past month hit me later that evening, and then even more on Monday. At first, I only felt a little bit tired. Then it started to feel like I had rocks weighing down my boots. But I was teaching on Monday AND we had one more afternoon show to get through with the kids. Crashing was not an option. Not yet anyway. It was a fun afternoon and the audience – their classmates – loved seeing their friends singing and dancing on stage. 

Done. It was finally over! And that’s when I remembered the cleanup process: sorting the costumes, getting the kids to bring things home, the laundry. It nearly brought tears to my eyes. But it has to be done after every show. Thankfully, the students on the costume tech team helped. I plan to “borrow” them for our spring dance showcase. And by “borrow” I mean convince them to work with me for every show! LOL. 

Tuesday dawned and I was cooked. My entire body hurt. But my right arm was really blown up and sore. I sat, looking around at the aftermath of 6+ weeks of work. Everyone was happy with their performance. Each cast member and dance company member was happy with the way they looked. The company, in particular, got great reviews for their costumes. It was a relief all around. Why, then, did I feel like I forgot something? It was the oddest sensation. 

That’s when I remembered: me. Take care of me. All the post-it notes in the world couldn’t have helped me to remember that I have to stop, have a rest and take it all in. It goes by too fast, then it’s done and we’re on to the next. It’s good to pause and enjoy the end results. Meanwhile, I’ve already started working on costumes for our next shows. (Pausing to breathe, just for a sec).

And now, if you’ll excuse me, I’m going to sit down for just a minute. Really. 

Be kind to one another.

Peace & painlessness,

Beck❤

Zzzzzzzzzzzzzzzzzzzzzzzzz……………

Random acts of flaring……. 

It’s been a week! As I fly from the middle school’s show into this weekend’s professional program, I’m feeling excited but exhausted. Six shows in two weeks! 

In the midst of all of the craziness, my rescheduled pain management appointment, last Friday, gave me some clarity. Carpal tunnel syndrome in my already RSD-affected right arm. I mean, really? And let’s not forget my back, the gift that keeps on giving. Apparently the bulging discs are being negatively impacted by how knotted and strained my back muscles are. Of course…. because, why not? He recommends physical therapy, acupressure & acupuncture. I’ll begin that soon. 

It feels like I walk a positive fifty steps ahead and then suddenly trip over obstacles that completely throw me backwards. That’s why I’ll never completely relax when it comes to my health. There is no “enjoy the silence” moment. There’s no silence. Ever

Bad days with RSD feel like you’re sharing your body with something hell-bent on destroying you. Far too often, very little brings relief. Most things agitate the situation. Between the pain, burning, stress, lack of sleep and, worse, lack of understanding from others, bad days are CRAP

Most good days with RSD feel like you’re being chased by something you can’t see. Like being hunted. The problem is that we don’t always know when or how we’re going to flare, what might set it off. There are certain semi-predictable aspects of RSD that we are fairly sure could negatively impact the day to day, (weather, illness, stress). But the random acts of flaring make it difficult. 

Stubbing a toe, tripping, getting bumped in a crowded bus or train, stepping off of a curb – all can set off a firestorm of pain that most people don’t understand. And I seriously hope they never have to. 

Take, for example, an event from my own life. I was walking past a crowded bus stop one afternoon. There were lots of kids. A couple of them started play-fighting and didn’t see me passing. I did everything short of climbing the wall of the building next to me to avoid getting bumped. It wasn’t enough. He barely hit my arm and side. But that was that. I felt it for the rest of the day. 

Even less dramatic is what happens at my doctor’s office. Every time they examine my affected limbs, they try to gently feel for temperature differences and swelling. I inevitably feel that exam long after the fact. It starts nerve pangs that fire up the spasms in my hands and arms. It’s a vicious cycle. 

I’m trying desperately to wear my compression gloves while I work and a nighttime arm brace for the carpal tunnel, (recommended by my doc). But my right hand – my sewing hand – is fighting with me at the moment. Swollen and sore, it burns throughout the day. And the spasms are worse right now.  There’s not much I can do for lasting relief. I use heat but any comfort is short-lived.

At one point, the doctor said that he could do a caudal epidural to help my back. Go back to last summer’s blogs, if you haven’t already read them. I looked at him and asked, “No offense, but do you honestly think I’ll let any of you inject my back in any way? After what happened?” Sharp objects aren’t an option. He just nodded and agreed that noninvasive was best. 

Then he moved on to what we can do for my arm. “There’s always surgery.” Really? That stopped me cold. “So that would involve operating on the more jammed-up of my two jammed-up arms?” To which he responded, “No? Okay.” 

I’m forced to laugh at this point. I mean, what the heck else can I do. It is what it is.

So that’s where we are. I’m busy, happy and pained. Just like always. 😉 And now, I’m off to steam costumes for tonight.  Life just keeps rolling on……

Be kind to one another.
Peace and painlessness,

Beck❤

Applause! Applause!

A few weeks ago, I was asked to take over the costumes for the school musical. By the time you’re reading this, two of four performances will be finished. And I know I’ll feel a tremendous sense of relief. And probably be crashing hard from last week.

Any work I do involving the kids always begins waaaaay more stressful than it ends. I noticed it yesterday, during our afternoon performance for their fellow students. After three and a half hours of steaming their costumes, and having more pain than I’d had in a long time, I wasn’t in the greatest mood. But then the kids started arriving and their excitement was palpable. It’s contagious! Oh, to have the excitement of a preteen about to sing and dance on stage, some for the first time. I remember that feeling from my own school days. In 8th grade, I was the narrator in “Joseph and The Amazing Technicolor Dreamcoat.” And, during my senior year in high school, I played the part of Oliver in “Oliver.”  I remember it fondly. I remember all of it fondly. And that made me relax a bit. As our cast was on stage, my crew of students began dancing backstage to the 50’s music blaring from the speakers. “Come on Ms. Becky! You have to dance!” So dance we did. It was hilarious. At one point, our principal danced through. We had a blast. 

I admire the courage of children. When we’re young, really young, we just join in at the playground. As we age, we start to lose that confidence, that freedom to be our most authentic selves. And insecurities fight their way to the surface. It’s no secret, we try to please others. Try to act a certain way, like certain things, in an effort to fit in. It takes so much energy and courage to put your truest self out there. It’s part of the reason I enjoy working with the young dancers at my school. They have so much talent. But they have to be strong and vulnerable at the same time, or their choreography can fall flat. When they really give themselves over to their work, it takes your breath away. 

As someone with a chronic illness, I’ve had to adapt myself countless times, not to please others, but to get through every day. Early on, my overall pain was so out of control, but I did my best to hide it – not well, apparently – from those who know me best. But to anyone beyond my circle, I became a master of disguise. It’s something like living all nine lives of a cat that dresses as a chameleon. That is the most bizarre analogy I could come up with, but it fits.

I was Becky. Nurse Becky. Mommy. Beck. Sister. Daughter. Wife. Friend. Sick person. Sicker person. Invisible-sick-person. Hanging-by-a-thread-sick person. It was miserable. And yet, the outside world was so impressed that I did what I did, especially once they found out about my health. I served as PTA president for multiple terms. Class parent. Volunteer. I volunteered a lot, all to make up for the fact that my baby girl had a broken mommy. At least, that’s how I felt. Because that was my reality. My nine lives sideshow went on for long time. At some points along the way, however, I had to show my vulnerability. Multiple surgeries will do that to a person. Forcing myself to stop, assess and reinvent. It wasn’t impossible because I’d been reliving the pattern for over a decade. But it left scars on my facade.

And then suddenly things changed completely, just over a year ago. I lost my pump, the morphine, the cane…… and I was left with ME. I was back to basics. Back to only oral meds and a sense of figuring out who and what I was supposed to be. What role was this? How the heck would I play it out? Does that sound weird? Because it feels weird writing it. 

I had to try and remember the courage of my younger days, not that I was a model for going out on too many limbs. (I already know what my mom’s response to that statement will be, but it’s TRUE!). Starting school again. Becoming a substitute teacher two years ago. Finishing up my 6th year as costumer for those young dancers. And being honest with the people I work with and for about my vulnerabilities. Every single time I attach my name to something new, I’m reminded that sick doesn’t mean done. That chronically sick means I have to chronically reinvent myself. And do it all with the courage to say, “I’m not finished. Not by a long shot.”

I’m good with that. I’ll just add some glitter, it’ll be fabulous. 

Be kind to one another. 

Peace & painlessness, 

Beck❤

Living with intent….



Intent: purpose, aim, objective or goal.

Earlier this week, before “Snowmageddon” hit here in NYC, I was working with sixth and seventh grade students. Since we’ll soon be prepping for our spring dance show, I wanted to motivate them for the work ahead. They’re almost all on social media and know about the # trend, as in everyone hashtagging everything. 

So I asked each of them to come up with a one word hashtag that describes them, or helps them with a goal. It needed to be their word. I wear mine on my wrist every day thanks to a great company called “My Intent.” They manufacture jewelry with words provided either by their customers or ready-made for sale, with the ultimate goal of having “meaningful conversations” and “positive energy.” My word is create

intend each day to create things: to design, to sew, to write. Not every day is creatively successful, but it’s my goal. Especially when my medical issues block my progress, it’s a positive affirmation that I can look at. And I do, very often. It reminds me that not every day will be too painful to create something beautiful. 

They initially struggled. But soon, they were ready to present to their classmates. Some of their words were: focus, improve, dedicate, turns, balance, cooperate, confidence, and kindness. A few kids said things like sleep and chill. Great goals at 12 and 13 years old. And older, to be honest. 

When I explained why I asked them to come up with the words, they got more into it. To live, work, and play with intent is to mean it. Far too often, we float through the day, just trying to get through all of the activities and responsibilities we must complete. It takes a commitment on each person’s part to be present for those moments. 

So I asked the kids to be present, to really make an investment of themselves in the choreography they’re creating. The thing about dancing in a group is that everyone has to make the same level of commitment, or it’s painfully obvious that something’s amiss. It’s inevitable that some rehearsals will go better than others. But I wanted to make sure they understood why teamwork mattered. Why dancing with intent is necessary. Why living with intent is even more important. 

We spend so much time with our faces buried in our phones, laptops, and tablets that we aren’t always aware of life around us. Case in point: walk down any city street. NYC is perpetually full of people bumping into one another on sidewalks because everyone is looking down, not forward. I get annoyed and say, “Really??” in my exasperated way, but I do it too! 

I asked the students to make a goal of intention. The intention to live, work, play – fully dedicated to the activity at hand. Even if they’re just meeting friends, be present. Homework or exams? Work hard to the best of their abilities. 

By the end of the class period, they were trying to come up with more words for themselves. And words for the class as a whole. It was fun to listen to their responses. They got it. 

It all came from putting on my bracelet on a particularly bad day. I reminded myself that the day-to-day of being chronically ill sometimes takes the joy away. It often robs me of my intent. And I resent that. 

So now I make a commitment to myself, to my life, each day. Whether it’s writing, designing or sewing, I strive to keep going. Time with my family? I’m motivated to check in with them and know how their day was. If I’m talking with my daughter, I’m invested in hearing what she has to say.

There are days that I can put my head down and think, “I did it!” And far too many where I shut my eyes and know that nothing was accomplished. But I am willing to try again. I intend to try. 

And, on those hard days, that has to be enough. And it is. 

Be kind to each other. 

Peace & painlessness, 

Beck❤

A moment, please, to catch our breath…… 

I ran into Maureen earlier this week, on a cold evening, as I walked home from rehearsal. We met when our kids were briefly in the same elementary school. Although our children were a few grades apart, we became friendly through various parent groups. 

Her daughter, like mine, is an only child. We initially bonded over that. Then it became about the neighborhood, family and, finally, health. She’d asked about my cane, years ago, and we got to talking about RSD and autoimmune diseases. Maureen has rheumatoid arthritis. Now, when we see each other, we joke about “not looking sick!” And tell each other how “great we look!” It’s something only another person with a so-called “invisible illness” truly gets. 

Over the last year, we talked about high schools for her daughter and colleges for mine. She was worried about what would happen to Allie, as a high school freshman. We talked a lot about the support she needs and Maureen’s worry that she won’t get the same academic attention in a bigger school. I can understand her concerns. We all worry about our kids. It’s what parents do. 

But, this time, something else was wrong. My mind went immediately to Allie, but that wasn’t it. Maureen was deeply troubled and seemed like she needed to vent. She explained the difficulties she recently had, trying to get her medications. That some of her docs told her that they couldn’t prescribe any more pain meds – without giving her any advanced notice – and that she’d just have to switch to Advil or Aleve. AND, to add insult to serious injury, her RA injections wouldn’t be easy to come by either. What is this brand of medicine?!?! It seems more like being run over than ethical, compassionate care. 

If you’ve ever had a debilitating pain condition that requires the use of prescription medications, you know that stopping any med suddenly is dangerous and switching to OTC medications like Advil or Aleve will likely not help. It leaves the patient open to things like adverse reactions, intense flares, seizures and even death. 

I stood listening to Maureen talking about her health, her desperate need of a job that’s flexible, her money worries, and the joy that Allie got accepted to great high schools – but they’re outrageously expensive. Maureen’s despair was palpable. With nothing to offer but a listening ear, I did just that. What else could be done? When we parted, we made our usual joke about not looking sick, but this time it was half-hearted and sad. 

I realize that I live in grace. My life is a series of moments where, in my head, I’m screaming “WHY ME?!?!” Outwardly, I project this image of positivity and strength, or so I’ve been told. Believe me, my head goes to the scary place of self-pity way more than anyone will ever know. But those awful moments are cushioned by many things. My family. My friends. My job. All of the moments that leave me saying “really??” are met by people and circumstances that enable me to keep fighting. That give me reasons to fight. 

Walking away from Maureen, I felt at a loss. How do we help each other? I wish there was an easy answer. I wish I knew of a job. And I wish I could easily predict what high school will be like for Allie. But I can’t. As a “fixer,” (someone who is compelled to offer suggestions and solutions to various problems in an effort to “fix” things), it was gut-wrenching to stand in front of this woman – this fellow mom and chronic illness warrior – and have nothing to offer that could help in any way. It felt like failure, tasted like shame. 

Our lives are full of hit and run moments, some happening so frequently that we barely have time to stand up before the next one wipes us out. And there’s no easy solution there. No “fix.”

Instead, I’m left with another “really?” moment. Not for me this time, but someone I care about. I’m just throwing it out into the universe, asking whoever’s out there to give us a break. To let us have some time between those hit and run moments, at least long enough for us to catch our breath. 

Be kind to one another. 

Peace & painlessness, 

Beck❤