Grasping…….

I recently watched a film called “The Dawn Wall,” about free-climbers Tommy Caldwell and Kevin Jorgeson. They embarked on a six year journey to reach the summit of Yosemite’s previously unclimbed “El Capitan.” It was thought to be impossible.

As scary as it was to watch this play out, I couldn’t stop myself. I can’t help rooting for anyone who’s been told they cannot achieve a goal, however impossible it may seem. It’s just too easy to write people’s dreams off as folly.

Free climbing involves scaling rocks and mountains with your bare hands. Literally the only thing keeping daredevils on those surfaces is serious upper body strength and the skin of their fingertips. As I watched, I caught myself glancing down at my own hands and shaking my head. No way. No way could I do anything like that… for a multitude of reasons.

To start with, anyone who knows me is well aware of my fear of heights. Then there’s the lack of ANY athleticism. Oh, and my completely crap medical history. But – other than those things – I am 100% ready to free-climb a mountain.

All jokes aside, I’m acutely aware of the condition of my own hands. When I fell about six weeks ago, I did something to my right pinky – probably broke it. My doctor thinks that I wouldn’t necessarily have noticed it immediately because sometimes injuries take time to be felt. Plus, I had so much pain everywhere else. So there’s that. And then, last weekend, as I was prepping for the show, I set off something in my right hand that has only gotten worse.

According to my doc, it’s “trigger finger,” a type of tendinitis. I laughed initially, in a “you have GOT to be kidding me” moment. But it’s not funny. It’s so painful. And infuriating. And worrisome. And…. and… and…. It’s one of my worst case scenarios.

Countless times I’ve said, “I cannot lose my hands.” It would be too much. Too cruel. Obviously, we all need the use of our hands for writing, eating, hygiene, greeting people, washing dishes, and sewing. I’ll just say that my tailoring skills are not up to par at the moment.

The doc said that we can’t know how long this will last. My terror over things being permanent is useless, since we simply can’t know the future. But I am terrified. I’d be lying if I said otherwise.

The burning sensation tells me that RSD could be involved, tendinitis doesn’t burn. When I wash my hands, it’s like pouring rubbing alcohol on an open cut. Or pouring it onto a sunburn. And I’m at a loss.

I stood in my kitchen earlier tonight and was overcome with sadness after running water over my hand. That’s when I cried. Is this my new normal?.

Tommy Caldwell made that climb despite missing a portion of his left index finger. Kevin Jorgeson battled the surface of El Capitan for days, the wounds on his fingertips preventing his progress. Every hand and foothold on that ascent is razor sharp. The scenes of both men examining the condition of their fingertips and seeing Kevin applying neosporin to his cuts, made me look at my own hands. I need them for more than the basics. I’m a maker. I create.

In the meantime, I’ve been ordered to get an X-ray on my right hand (for the pinky) and a new MRI of my spine. All of the running around at school has activated numbness and pain in my lower back, down my legs & into my feet. I guess we’ll see if the arachnoiditis is kicking up. Or if some new freakish diagnosis wants to guest star in my medical records.

And so I grasp onto the hope that things will un-flare. That my old normal will become normal again.

Wishing each of you a calm, manageable week.

Peace and painlessness,

Beck❤️

#thisiswhatsicklookslike

#rsdawareness

#rsdcrps

#the dawn wall

#tommycaldwell

#kevinjorgeson

Advertisements

Beautiful goodbyes…..

Over the weekend, we gathered to say goodbye to M., a lifelong family friend. We got to know her first as the school librarian. My mom started teaching at the school full time, just before I graduated. They became close friends. She became a part of all of our lives.

I was sitting in the church, remembering many instances when M. had done something just for me. There were more than a few times.

There was the moment when our school was having a book sale. I arrived with my 25¢ and carefully combed through the stacks. M. came over to me and said that she’d put two books aside for the only Becky she knew. I was about 7 and excited at the mystery. She brought out Tasha Tudor’s Becky’s Birthday and Becky’s Christmas. I couldn’t believe it. We didn’t even know her well yet, but she did the most amazing thing for me. I’ll never forget that.

Fast forward to my junior year of high school. I was destined to have a terrible date (ugh, the nightmare), but my dress was epic. An emerald green Jessica McClintock (no relation) lace dress. I LOVED that dress. My mom brought me to M’s parents’ apartment for alterations. They were professionals and the dress was tricky. I stood on a chair in their dining room, waiting patiently for her dad to finish pinning and pulling at the hem. This process was repeated the following year, for my senior prom. Another beautiful Jessica McClintock dress, peach this time.

At some point, we were introduced to M’s fiancé. He owned a pub half a block from the World Trade Center. We ate there a few times and even went to karaoke. It was there that my husband and I celebrated our wedding.

There were holiday parties, graduations, weddings, births….. all with the same cast of characters. M. was one of them. It was just normal.

The last time I saw M. was during the summer. We were both running errands. I was leaving the bagel shop as she was passed by. She was in a lot of pain. None of us knew what it meant at the time, but there was nothing to be done.

Sitting in the church on Saturday – recalling all of the moments when my life and hers had carefully intersected – I couldn’t help but smile. As the final song began, I thought I was imagining hearing Ozzy Osbourne’s “Mama I’m Coming Home.” It was being sung by a man playing an acoustic guitar at the pulpit. I turned to my left – to look at my daughter and husband – they were definitely hearing it too. The song was the most appropriate choice, as M. had buried her beloved mother in 2017. There didn’t seem to be too many people who knew it was an Ozzy song. It was actually perfect.

It was a sad, beautiful goodbye. The perfect goodbye, actually. And those don’t come often.

Wishing each of you many hellos, joyful interactions, and beautiful goodbyes.

And sending love out into the universe, to anyone who needs it today. ❤️

Peace and painlessness,

Beck❤️

#thisiswhatsicklookslike

#rsdawareness

#rsd/crps

Words that find us at the perfect time…..

I want to thank all of you for the incredible feedback on last week’s post. We must stand together and educate not just the public at large, but those closest to us. They need to start understanding the intricacies of living with chronic illnesses and pain.

But, this week, I’ve found myself swept up by the words of another. This time, the late André Previn. As people shared memories and photos of the composer/conductor/pianist, a few shared his quotes. This one resonated so completely that I had to write about it.

“If you’re going to do good work, the work has to scare you.”

The end of 2018 showed me – in extreme detail – how fear and unrest lead me to panic and stuckness. I’ve been so suspended in my own fear that I failed to meet myself where I’ve been. The number of times that I’ve said, “we need to meet people wherever they are in their journeys” keeps flashing before my eyes. Yet I was completely unable to meet myself.

Many of you can relate to being harder on yourselves than anyone else could ever be. I’m no different. We sometimes lift others up while stepping over our own needs and hopes. I’m guilty of this as well.

But I hadn’t thought about my fear as anything other than a negative. It literally froze me into inaction, and I couldn’t see the way forward. The two simultaneous projects I’m currently working on remained untouched for a long time. I’d make some headway and then walk into a creative wall. It was depressing and infuriating.

In February , I kicked that wall down, at least partially. As both shows are this month, time got me moving. But my ideas started to percolate again. And my daughter is a tremendously helpful sounding board. Talking to her enabled me to edit my concept for the professional dancers into a cohesive look. I couldn’t have done it without her.

Somehow, I was able to disentangle myself from the “I can’t” and attach myself to “I have to.” It wasn’t just about deadlines, though they definitely help. It’s about doubt. Lack of confidence. And, more than anything, worry about my health. I had to make these shows happen because I know I can. I’ve done it before. Are the stakes higher? Absolutely. But no outside stakes are higher than what I perpetually set up for myself.

It’s a point of pride. There are so many days during the winter when my body aches and I’m exhausted. Pain flares and colds leading to flares force me to slow down. I resent it. So getting these jobs done was a must. I had to. I have to.

Luckily, I’ve had extra help at school. I’ve got a team of six! And they’re excited about having a role in styling and costuming our cast. It’s fabulous. Delegating the more physical tasks has been extremely helpful. And allowing this amazing kids to take more active roles helps them take ownership of the team. It’s been eye-opening. I normally work alone, but see the benefits of letting people assist me.

It’s not easy for people living with illnesses and pain to accomplish the basics. Throwing major projects make life seem like one insurmountable task after another. So when we can do these big things, it’s a massive victory. When we allow ourselves to accept help? It’s AWESOME.

It’s okay to be afraid. In fact, that fear means it matters to you, that you’ll need to work harder and find ways to cope with challenges. We can do all of that. We just need to do it in our own time.

“If you’re going to do good work, the work has to scare you.”

Believe me, I’m still terrified, but that’s okay. I haven’t completely unstuck myself from what’s held me in place, and that’s okay too. March will continue to be chaotic, but soon it’ll be April and I can rest. ❤️

Wishing each of you success in the big and the small things. Know that I believe that you can do it all, in your own time.

Peace and painlessness,

Beck❤️

#thisiswhatsicklookslike

#rsdawareness

#rsdcrps

Chronic means chronic…..

Dear friends,

Please feel free to share this with family or friends who simply don’t get it.

I was speaking with a fellow pain warrior recently. In addition to managing multiple chronic conditions, there are several major events – serious crisis events – that have occurred in his life.

As we commiserated, he made a comment upset me SO much. “I just have to get over it, I guess. And just get on with it.”

Get over what? The potential side effects of new meds. The day to day symptoms of his illness. The management of family and work related issues.

Get on with what? Taking care of everyone. Handling the issues that have come up with other people in his life.

WAIT…..WHAT?!?! No, no, and a side order of NOPE.

Please, please, please let me set the record straight. My friend already knows this. His family and friends apparently do not.

Chronic means CHRONIC. Our illnesses do not go away. There is no cure. Sometimes things get worse, that’s out of our hands.

We all have to grieve the loss of normalcy, absolutely. We all have to try and accept the new norm, the new ways that life is going to run from now on. That takes time, we know that. But do not, for one second, believe that we aren’t grieving too. Do not think that we’re not hurting because you’re hurting. It’s brutal to see your family suffer, the guilt is awful.

Once the smoke of a diagnosis has cleared and we see the damage, we feel guilty for how it affects those closest to us. We may not see anything beyond ourselves immediately. But we do see it.

A chronic illness diagnosis is like a death. Death of our old lives. A loss of who we all were up to the very last minute before the doctor says, “we have your test results.”

It’s not easy for anyone.

I think it’s especially difficult in the early days (months, years). It takes time to adjust. We’re all trying to work out our new roles. People will bump heads, arguments happen. Anger results. Emotions run high.

But while all of this is happening, please don’t forget that your loved one – the one who was just handed a medical life sentence – still needs you. They need you in ways that would never have happened otherwise.

We can’t just get over it. We can’t just get on with it. It’s not an obstacle course that we run temporarily and then resume our old lives. We literally take the obstacle course with us. Everywhere. There’s no escape.

And there will be good days – even great days – when it seems like we feel great. Enjoy those times. But please don’t forget that we often pay the price for those great days. We crash and burn. Fatigue, pain…. it all amps up and we have to rest. This is not optional.

It’s not easy. But it’s what’s happened. We didn’t ask for this. We never wanted to give up so much of what we love: careers, partners and friends who simply can’t handle the changes in us, mobility, independence, spontaneity. So many things.

Please try to remember that. Please try to see us for where we are right now. The us from the past isn’t coming back. But we’re still us.

And we cannot “get on with” or “get over” any of this.

Peace and painlessness,

Beck❤️

#thisiswhatsicklookslike

#rsd

#rsdcrps

Unearthing…..

Like so many others, my family and I have been caught up in Marie Kondo fever. For those who don’t know about her, Ms. Kondo wrote an amazing book, titled The Life-Changing Magic of Tidying Up: The Japanese Art of Decluttering and Organizing.

The author encourages readers to sort through items in their life, seeking out those that spark joy. If they no longer do that, you must thank the item and send it on it’s way. It might sound far out, but I encourage everyone to read the book and watch her show on Netflix. She makes it sound way nicer than I can here. I highly recommend it.

Anyone who knows me can honestly say that I’ve never been the neatest person. I fully admit it. But years of medical drama and pain made it easy to leave things stagnant. I couldn’t clear things out all at once because I would get tired. Or I didn’t feel well. Or….Or….Or. So the task has grown exponentially.

Anyway, I started sorting everything in my dresser and closet. After I finished the clothes, I started on purses/scarves/etc. That’s when I found a small storage box, on the bottom of the closet.

Inside was a random assortment of items. Jewelry. A small frame. A few pictures. A Weight Watchers pamphlet, with my weight loss written into several slots. I was at 126.3 at the time, a major victory for me.

Also in the box we’re pieces of the ID anklets my daughter wore in the newborn nursery plus a piece of my own – all cut off once we arrived home. It’s a time capsule, of moments and memorabilia that I treasure.

So caught up was I in baby memories, that I hadn’t realized I was holding something, an item moved so I could access the ID bands: my green Littman stethoscope.

When I started nursing school, we were given a list of needed supplies. Uniforms, textbooks, standard issue stethoscope. They weren’t cheap, by any means. But they definitely weren’t Littmans either. Owning your own fancy equipment was a sign of commitment, of status. At least it was to me. I saw nurses with their colorful stethoscopes around their necks and I envisioned the day when I’d be able to afford one in my then-favorite color: hunter green.

For our first married Christmas, my husband surprised me with it. I was so excited. It was like I’d truly arrived as a nurse, even though I was as green as the scope in terms of clinical experience. But it didn’t matter. I had my own Littman. A green one, no less.

How many blood pressures did I take, using it? How many times did I listen for bowel sounds? How many moms did I examine? How many of their babies did I admit to the nursery, using that scope? Hundreds. Maybe more. I wore that scope, like a talisman, on my first day at each new job – paving the way to my spot in postpartum….. and my last day in the newborn nursery. I wore it as I sang to the babies while I wrote my notes and restocked supplies. I wore it when I ran to a new mother’s room when we were emergently paged. I held onto it when I felt something in my foot pop, but I had to keep going.

And I held it in my hand tonight. I tried to remember how it felt to put it away all those years ago, for the last time. Bruised by the knowledge that my nursing career was over. Back then, a part of me thought I didn’t deserve to keep it, I wasn’t a nurse anymore. That was the irrational part of me. But sentiment and value kicked in and I just hid it away, where I wouldn’t accidentally find it. In that box of treasures.

Tonight, looking at it…. seeing it again, I honestly wasn’t aware of how I felt until I realized I wasn’t sad. I’ve often spoken about how angry I was, how I grieved the loss of my nursing self. And I’ve held onto that memory for so long, I forgot to forget some of that negativity. It’s been too long.

That Littman was always a point of pride. My husband had given it to me & I loved how professional it made me feel. It still makes me proud. I loved being a nurse and barely got to enjoy the job I worked so hard to get, in the unit that I loved. I’ll always feel a loss where it’s concerned. But I was reminded that so much has happened since then, good and bad. So much has happened.

I’m glad I found it. I held it in my hands & tried to envision what it meant to me. It still sparks joy, in my heart and mind. Therefore, it’s a keeper.

As I packed up the clothes and bags that no longer serve me well, (hopefully they’ll bring joy to others), I thanked all of it. Yes, I actually thanked each item and carefully packed it up. Exactly as Ms. Kondo instructs. It’s a good way to remember what things mean to you, what they might have meant at some point.

That Littman was loved. Is loved. And I’m extremely happy that I found it.

Wishing you lives filled with calm, health and, of course, joy.

Peace and painlessness,

Beck❤️

#thisiswhatsicklookslike

#rsdcrps

#rsdawareness

#sparkjoy

Only one human was harmed in the making of this blog…

I had a bad fall on Saturday night.

It was kind of a sleepy day after being sick for most of the week. I was heading downstairs to answer the doorbell and suddenly found myself painfully slammed against the door, head first. Face down. Hard.

If only I could remember what the actual heck happened…. I can’t. One thing is certain, I had to have been airborne for part of the way. The impact of my head hitting the door is the one thing I can remember. It wasn’t good.

When I stood up, which I think I did quickly, my whole body felt sore. I did mental checks though: okay, I can stand up…. knees hurt, but they work. Flex the wrists…. Turn your head.. OUCH. What’s wrong with my left arm? OUCH. And the right side of my chest hurts… OUCH. And my right thumb. (I thought I broke it). That’s when my husband appeared next to me, at the bottom of the stairs. He and my daughter had heard a thud, but didn’t know what happened.

In the days since, I’ve had to put ice on my head, chest and knees. I know I’m not supposed to, but there wasn’t another option. I wrap the packs well.

My doctor sent me for a head scan. It was the first time I’ve ever had a CT scan. Slightly terrifying. Mostly because I’ve always feared what impact my many falls and head bumps have had on my brain. Apparently, and in the words of my doc, I’m extremely lucky. The chest X-rays revealed no breaks. If this is what bruised ribs feel like, I CANNOT imagine the pain of broken ones. And I’m on daily medication to control RSD pain. Without my meds…. yikes. I imagine I’d be functioning a lot less.

So the bruises will fade. My balance and coordination will continue to be junk. In the immortal words of Cher, “And the beat goes on.”

Wishing each of you a peaceful week. And the ability to descend a staircase more gracefully than I can. 🤷🏻‍♀️

Peace and painlessness,

Beck❤️

A shudder is a spasm is a chill is a jolt……

I was speaking with a friend about the sensations they’ve been experiencing in their neck. It’s been going on for a long time and we were talking about possible causes.

As I listened, I realized that their “shudder” sounded a lot like my “spasm.” And another friend’s “shock.” It’s so hard to describe pain exactly. We list descriptive words that come as close to the real thing as we can get. Yet some docs still manage to look bewildered as we explain our pain.

And the pain scale is sort of a joke. Granted, it can be helpful to some degree, but my 3 might be someone else’s 7 or 10. It’s too broad. Too murky.

I also think that this mucky mess of describing pain is part of why pain patients in this country are getting completely screwed. This country harbors a broken system that merely tries to cover itself and not it’s patients. The insured and the uninsured, the rich and the poor, famous or every day person – we are all losing and all paying for that loss. No one gets out unscathed.

If a patient is trying to grade their pain according to a scale, the doc may or may not feel they have to medicate better, or at all. This leaves people desperate.

It burns families and communities. How many news clips and documentaries do we need to see on the heroin epidemic before we realize that we’re promoting this cycle of abuse by inadequately treating pain patients? Seriously. How many?

A friend shared an article from the Washington Post about former Nationals pitcher, Micah Bowie. After a short time with the team, he required back surgery to get a spinal cord stimulator placed. Afterward, the SCS dislodged. It, in turn, damaged his diaphragm to the extent that no doctor wants to operate. Here we have a famous ball player who is now waiting to die, living each day in agony because he has subsequently been unable to get adequate pain relief. And his doctors KNOW that the SCS backfired, and he is now without proper pain management. Since this mess started, he and his wife have had to go through their children’s college funds, selling assets and trying to reconfigure their finances to take care of him. And keep him alive. No one, regardless of financial status, notoriety – whatever – should be “writhing in pain” every day. He can’t use extra meds because that would make him run out too early and he’d be unable to get more. Then he’d be “drug seeking.”

This scenario is playing out every single day in this country. And it’s tragically happening to people without money or means to alleviate any of the stress. What will it take to make it stop?

How do we get off of this ride?

I wish I had a solution. I just know that we’ve reached a breaking point in this country. There are addicts, they need help. There are people with nefarious goals, sure. But there are also people suffering. Really suffering. Imagining death must be better than living in the pain they have to deal with every single day. And one life lost to pain is one life too many.

I hope that wherever you are, you have doctors who believe you. I hope that you have enough meds to keep you functioning. I hope that you know you’re not alone in this.

Peace and painlessness,

Beck ❤️

https://www.washingtonpost.com/sports/2019/01/27/this-is-no-way-live-former-nationals-pitcher-micah-bowie-is-fight-his-life/?utm_term=.fd1a010e0ee8

#thisiswhatsicklookslike

#rsd

#rsdcrps