Fun with words….a not-so-triumphant return to square one…..

Some words to know:

Arachnoiditis: a pain disorder caused by the inflammation of the arachnoid, one of the membranes that surrounds and protects the nerves of the spinal cord. It is characterized by severe stinging, burning pain, and neurological problems.

Dural ectasia: is widening or ballooning of the dural sac surrounding the spinal cord. This usually occurs in the lumbosacral region, as this is where the cerebrospinal fluid pressure is greatest, but the spinal canal can be affected in any plane.

Lumbar lordosis: a curving inward of the spine. Also known as swayback.

Ligamentum Flavum One of a series of bands of elastic tissue that runs between the lamina from the axis to the sacrum, the ligamentum flavum connects the laminae and fuses with the facet joint capsules. These bands serve as a covering over the spinal canal.

Hemosiderin staining: Hemosiderin — a protein compound that stores iron in your tissues — can accumulate under your skin. … When red blood cells break down, the hemoglobin releases iron. The trapped iron is then stored as hemosiderin.

Disc desiccation: one of the most common features of degenerative disc disease. It refers to the dehydration of your discs. Your vertebral discs are full of fluid, which keeps them both flexible and sturdy. As you age, the discs begin to dehydrate or slowly lose their fluid.

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I had to look those words and phrases up, reminding myself of exactly how bad my spine is.

Let me back up. Last Tuesday, I went to see my doctor. It was meant to be a follow up and a chance to realign my med refill schedule with my monthly check-ups. The appointment was moved to his west side office. I’ve never received good news in the west side office. Not once. This visit was no different.

A friendly resident came into the room and ran through my history. Then she “checked” me – the usual muscle strength and all that. I asked about my MRI results. Her reply was: “I just looked at them and nothing seems negative or out of the ordinary.” Hmm…. okay. As I expected, nothing’s changed. (Note to self: never, never accept the word of a resident. Especially one who doesn’t know you at all).

Doc came in and asked how I’ve been. Blah blah blah. When I asked about the MRI, he pulled up the results on the computer and turned the screen so I could follow along.

Then he went down the list, point by point of what’s WRONG with my back as of 5/31/19. I glanced over at the resident and she looked down quickly and began taking notes.

He scrolled through the images, explaining them as he went along. I wish I’d taken pictures of them. The contrast enabled them to see the arachnoiditis. It was blatantly obvious, no question about it. And there are more renal cysts than last time. “They’re only problematic if they rupture. They’re probably benign. Your kidney looks slightly misshapen, but it could just be the image. You need to talk to your urologist about it though.” Ummm…. okay.

He was still talking but I couldn’t even hear the words, except “I think you should consider getting a spinal cord stimulator. We’ll set up the trial, it’s easy to arrange.” Wait, what?

Seriously….. what?!?

Then he mentioned “radio frequency” treatments. Hold on. Let’s clarify what that is for anyone who’s unfamiliar with the hellish torture known as radio frequency treatments.

Radiofrequency ablation, also called rhizotomy, is a nonsurgical, minimally invasive procedure that uses heat to reduce or stop the transmission of pain. This procedure is most commonly used to treat chronic pain and conditions such as arthritis of the spine (spondylosis) and sacroilitis.

Exactly as I thought. And no, I will never, never, EVER go through that again. The pain of it, the after flare of it. He looked at me for comment, so I commented: “you’re talking about burning the nerves?”

“Yes…. basically.”

BASICALLY? Yes. Yes, that’s exactly what you’re talking about. And my response is HELL NO. Nope, nope, and a side order of NOOOOOOO.

How did I get from “nothing out of the ordinary” to let’s get you signed up for a bunch of smaller procedures leading to a surgery to have another device implanted?

Denial. That’s how.

I know exactly how bad my back is. I’ve been living with congenital back problems for my entire life. When my parents took me to the doctor as a middle schooler, they confirmed bursitis in my right shoulder and instructed me to carry less in my backpack. Nothing more in depth was offered or encouraged. They asked me to touch my toes and reassured my parents that I didn’t have scoliosis. That was it. We didn’t know better. We didn’t know anything.

I couldn’t use a Baby Bjorn (or any carrier, for that matter) with our gal because my back pain was SO intense, I couldn’t bear it. Fortunately, she hated those anyway, so neither of us missed out on anything.

But I really, truly, fully convinced myself that I was done with procedures. I walked out of the office after my pump was removed like David Lee Roth in the “Jump” video. Mentally, of course, not actually jumping. Like, “See ya later, suckers! I’ll never be in for another procedure EVER again!” (Never say never, especially against an imagined soundtrack and David Lee Roth leaping across a stage).

I fully resent being back in this spot – having to choose what crap thing I want done to my spine. But I’ve been kidding myself.

Of course, none of this has to be done. Not like last time. I made sure that the laundry list of things going wrong wouldn’t paralyze me if I did nothing, not like last time. Doc reassured me that it’s a matter of pain relief and trying to reduce inflammation. So, technically, I am able to avoid all of it. But should I?

What a mess. I cried as he went through it all. He pulled up a chair and held my hand and said, “all of this will be easy to arrange and the procedures are simple. They should help.” Nothing about this is simple. I said as much. And something that should help may not.

What a mess. I’m at a loss because there’s so much else going on in my life right now. Things I can’t even get into. And now this. The persistent burn, the constant back pain. It’s getting to be too much to ignore. It already is.

But I’m incredibly stubborn. Maybe that’s how I’ve survived all of these years: denial, positivity and complete stubbornness. That is how I’ve done it! Geez. Focus on something else. Keep moving forward. Smile constantly. Never let on that you’re in that much pain. Never give up.

Right now, I have to focus on the show. June 19th. I’m excited and nervous and unprepared and ready. The pain will still be there on the 20th.

This is how it goes, right? We can all relate to that. We manage one spinning plate only to drop the next one while balancing six others.

Wishing each of you NO opportunities to have to learn new medical vocabulary words, tons of balance & calm in your plate-spinning endeavors, and quiet. Blissful, uninterrupted quiet to be able to recharge for the next time. Because there’s always a next time, but we “jump” on.

Peace and painlessness,

Beck❤️

#mightaswelljump

#thisiswhatsicklookslike

#rsdawareness

#arachnoiditis

#crps

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Survival of the people-pleasing, rule followers….

Well, I made it through the complete chaos of last week, mired in uncertainty and self-doubt. I made it. There are moments I can’t recall, but I’m okay with that. Maybe they’ll come back to me, someday. More than likely, they won’t. But, really, who cares? It’s over!

I made it.

And here’s how I did it: I admitted the fact that I needed help. If not for that? Well, let’s say it would have been a holiday show repeat. But it wasn’t. In fact, it was one of the better shows I’ve ever worked!

I think I’ve written about the benefits of asking for help before. But during show prep, I become a colossally stubborn creature. Like I’m competing for the “Look at me! I’ve got RSD but I can still do it all myself!” award. And for what? All it gets me is aggravation. Not to mention how much of a joy I am to deal with 😬 (sorry, family, M. and the kids ). Plus, the inevitable crash afterwards is worse.

But this time, I admitted to the right people that it wasn’t just my physical health that concerned me. My mental health has been a bit on the frail side over the past 8 months. The older I get and the less control I have, the more stress frays my nerves. And I react badly. Or – I should say – I OVERreact, big time.

My mentor and I had a long, candid and – as he called it – sobering conversation. All of the things that were happening around me, internally and externally, balled up in a nuclear reactive state and then melted down around Christmas. I am not the same person I was back then. None of us is the same person we were last week, let alone months ago.

But I told him, it felt like I broke. (There’s definitely a blog post a few months back for any new readers!) I broke and had to pick up the pieces, a little at a time. One of those pieces involved saying no to things. Saying I literally cannot do one more thing. And extricating myself from scenarios that are physically or emotionally difficult. It’s okay to say no. It actually feels good.

I’ve been a people-pleasing rule follower for my entire life. My husband was the person who asked the questions, “what happens when you don’t follow the rules? Will the world stop? Does anyone get hurt?” And then he made me understand that the answer to both was no. I would not be responsible for the end of days if I strayed from the path of a perfection-seeking, rule follower. I could calm down.

And so, ever since, I’ve tried not to think about the silly aspects of saying no. The “this is no longer a real life consequence of saying no” situations. And it’s been liberating!

But, back to that sobering conversation of three weeks ago, my mentor sat and listened to me talk about my concerns and how I wasn’t sure I’d get through the show without additional backup. And, right then and there, he asked the right people the right questions. He validated my feelings (as he always does) and let me know that he valued me too much to ignore what I’d told him. Even if nothing had come from his act of asking, it meant a lot that he asked at all.

And thus the show happened, with only a few hiccups. But I had my costume kids and a teacher backstage. It made all the difference. Mostly because I was heard.

Each week, during our sessions, my therapist asks me what I can do to take care of myself. She knows what I do for my family. But she makes me ask the question: What would help me? I usually sit in silence, trying to think of something I can do to take care of myself first. It’s harder than you think, especially when you’re a chronic people-pleasing rule follower. My answer isn’t usually as deep or carefully thought out as it should be. I haven’t seen her in a few weeks because of the show. I think she’ll be proud of me. Happy that I finally listened and did the thing she wanted me to do: ask for support.

It’s a struggle, for sure. Acknowledging that I can’t do it all hasn’t been easy, especially since I’ve spent the better part of 20 years trying to prove that I can. Who did that benefit? Not me. WHAT did I show anyone? Only that I appeared to be fine. When I flared, people were always shocked. Like my illness suddenly came out of nowhere. My advice to anyone newly diagnosed with something: let people help you from the start. Ask for support from the start. It’s hard to do but it’s worth it.

So now, I gear up for the biggest show of my costuming life, in mid June. It’s important that I get things right. And I will.

Wishing each of you the calmest, low pain week.❤️

Peace and painlessness,

Beck❤️

#thisiswhatsicklookslike

#crps

#rsdawareness

#mentalhealthawarenessmonth

Places!

I’m in the thick of it now. Our show is days away. I’ve been organizing costumes and props, tailoring garments, and trying to keep calm.

I went to see my pain management doc last Friday. For the past month or so, I’ve had 24/7 burning nerve pain across my lower back. Nothing makes it better. Pretty much everything makes it worse. What to do? What to do?

Well…. since the battle of pre-authorization between the office and my insurance company was still going on, I’ve yet to get the MRI he ordered two months ago.

“You absolutely need pre-authorization.”

“You don’t need it.”

“Yes, you do.”

That’s when I said, “Figure it out and let me know what I’m supposed to do.”

In the end, they’ve (finally) decided I don’t need it. And they have a file number and the name of the insurance rep who gave it as proof. Okay then. As soon as the show is over, I’ll get the darn thing done. I tried to explain this to the nurse practitioner who spoke to me before my doc came in. She said, “can’t you just take the time for the test?” Not now, I can’t. In addition to costuming the kids, I’m also assisting their teacher. It’s a full day/every day gig, for weeks before the show. I have limited time with the kids for sizing outfits, making alternations, etc. No, I can’t.

But back to my back. My doc said that the last pics of my fabulous spine showed arthritis. With all the rain we’ve had in NYC lately, he thinks that didn’t help. It possibly flared up the arthritis which, in turn, kicked up the nerve pain. He recommended taking the prescription strength Motrin for two weeks, see if that helps, and get the test done ASAP.

Well, it’s only been a few days and I think the Motrin has helped the arthritis for sure. The nerve pain has lessened a bit. I’m grateful for his insight. For some reason, I always forget about that Motrin prescription. Maybe because I set up my med trays two weeks at a time, everything pre-arranged. I don’t always remember extra meds that are added for limited spans of time. In any case, it’s helped.

The other thing that we discussed was the large, painful node under my right arm. This isn’t the usual one. It’s deeper, larger and annoying. He thinks my body isn’t reacting very well to the wet weather. He’s right. I feel like a swollen bundle of pain.

Anyway, that’s where we are. It’s a crazy time. When this one’s finished, I’ll begin working on the professional dance company show that’s in June. It’s a larger scale endeavor, but I’m excited. And nervous. And already exhausted. LOL

On with the show!

Wishing each of you a low pain week that brings you at least one moment of complete joy and calm.

Peace and painlessness,

Beck❤️

#thisiswhatsicklookslike

#rsdawareness

#crps

The value of having value….

The pain is strong today, my friends. I’m sure anyone dealing with arthritis can relate. We’ve had so much rain in the past week that my body seems to be playing a game of how puffed up and sore can we stay? I loathe this game. Plus my lower back is on fire. The burn is concerning.

As I make preparations for the spring dance show – which is a week from Thursday 😱 – I realize that I should be waaaay more anxious than I am. The odd thing is, I cannot find the energy for it. I’m just slowly, calmly ticking things off as I go, it’ll all get done. Fingers crossed.

I was also recently given a major reality check. My advice to each of you is to know your own value. Seriously. Be aware of how your time and energy are spent. We don’t have a lot of either, so be sure you’re making the healthiest choices for yourself.

In the end, the energy vampires and people who take things for granted will still be there, but we don’t have to remain immersed in that energy.

I’ve been reevaluating future projects. And although I haven’t made any decisions yet, I’m going to be making them in my favor.

That’s what we need to do. Pain and fatigue demand it. How can we best serve our health and well being? And sometimes those choices are hard. But that’s inevitable.

Take care of yourselves and know that you needn’t figure it all out right now. But when you do? Make certain that you’re happy and confident that it’s physically and emotionally right for you.

I wish each of you the knowledge that you’re a valuable commodity. Never forget that. 😊❤️

Peace and painlessness,

Beck❤️

#thisiswhatsicklookslike

#rsdawareness

#crps

Bettering the rules of pain engagement…..

I got a lot of wonderful feedback from last week’s post. Thank you!

Someone asked why I hadn’t tried CBD products before now. I guess I’m sort of superstitious, as in not messing with a formula that has worked well for me. In all the years that I’ve been taking these same meds, I’ve been able to function. I’ve been able to get creative gigs and maintain some normalcy. Our version of “normal,” anyway.

And, another thing, I’ve always been a rule follower, (for the most part, lol). My docs laid out the rules and I followed them. It was only when complications came up after more than one procedure that I started to buck against the system. Started saying “no thanks,” with a smile on my face. Making choices that felt right for me, not because my docs were saying I “should” try something.

It’s come up this week – more than a few times – about being positive in the face of illness.

I can’t speak for anyone else, but I’ve built my whole blog on trying to find the good in a bad situation. Some would say it’s my platform.

It’s not easy, dealing with the every day of it all. I think everyone would say that. And I’ve lived on both sides of this. The “can’t see a way through/too much pain to deal/don’t know what’s going to happen” of it. And the “trying to pick up the pieces/make the most of this one good moment/try to smile at the good things” of it. And you know what made the difference? At least for me? Pain relief.

There it is. It’s not rocket science. It’s not a magic trick. My doctor was allowed to practice medicine in the way he felt would benefit me the most. Did it always work? No. But I’ve found a balance that does.

That’s what did it. At least in part.

Somewhere in this mess, I found a way to cope that suited my life, my situation. Every day is not the greatest day, or even close to that. But they’re all not the worst either.

I think the most important rule in all of this? There are none. No rules. No perfect response. No absolute cure.

But the one absolute must? Pain relief.

I cannot and will not judge the choices of another person in pain because I’m not living with their pain. And they’re certainly not living with mine. So I merely extend my support, my virtual hugs, my empathy. That’s all I can appropriately give. And my wishes that people experience relief soon.

The rules of pain engagement? There are none. Pain abides by no decent standard. It doesn’t give people a pass because they’re exhausted. It doesn’t let up merely because we’ve hoped and prayed that it would. Pain lets up when pain is treated seriously and appropriately by medical professionals not being handcuffed by policy makers. People get relief when they’re taken seriously by the healthcare system and not screwed by finances or insurance issues or societal pressures. When all of that lines up? Well, then patients don’t have to make severe choices – potentially deadly choices – to get relief.

When that lines up? People can function, live, eat, sleep, communicate, move, walk, work better. Not perfectly… better. Doesn’t everyone deserve that?

We exist with the rules of pain engagement every day that we have chronic pain. It would nice if more days were better than others.

Wishing each of you better days ahead. ❤️

Peace and painlessness,

Beck❤️

#thisiswhatsicklookslike

#rsdawareness

#crps

A new LEEF, aka the game changer…….

Disclaimer: this post is not meant to replace advice from your medical professional. I am not advocating for anyone changing/stopping any medication without consulting with their doctor or nurse practitioner. This product has been helpful to me and my doc is aware that I’ve been using it. Thank you! On with the blog!

About a month ago, my daughter and I were running errands. We passed a local pharmacy with signs in the window advertising CBD water, CBD soap, CBD lotions…. you name it, they carried a CBD version of it. Curious, we went in. Unfortunately, their plethora of CBD-based products seemed like more of an afterthought than a thoughtful branch of their business. For the prices, I couldn’t find one clearly labeled item, with easy to understand info about benefits and uses.

This irked me. If you’re like me – a person who knew next to nothing about CBD oil and it’s many uses – it helps to ask the right person the right questions. That store didn’t inspire confidence. So we left.

As luck would have it, Hidden Hemp, a legal CBD dispensary, opened last summer and it’s not too far from home. This was my next stop. Not only is it woman-owned business (yay!) it’s also a carefully curated shop, filled with well researched products. This matters, at least to me. Nothing against that pharmacy, but anyone can add merchandise to their store. It doesn’t make them an expert in it.

So off to the experts we went! First major plus? Joann and her staff spent about 40 minutes with us. They answered my questions, explained the differences between CBD and THC. They listened as I talked about my medical history and why I was reluctant to use lidocaine on my hands. Second plus? They didn’t push any products on us. Instead, they walked through their inventory and listed the uses and benefits.

It was during the walkthrough that I was introduced to Leef Organics CBD Revive/Recover Balm. Since the skin on my right hand was burning at the time, I used a small amount of the tester on it. Risky, I agree. But I knew I had to try it before I’d ever buy it. Let’s just say WOW. The burn was substantially doused within minutes. But I said nothing. It probably wouldn’t have been polite to start shouting “IT WORKS! IT WORKS!” right after applying it. 🤷🏻‍♀️

I decided to buy a jar and see if it would really help me. I also opted not to mention it for at least a month. Okay, okay… I waited the month. Now I can shout about how much it works. It’s a game changer. So much so that I went back to thank Joann, the store’s owner. (Stay tuned for more on that 🤫).

In the past month, my daughter and I have both started using LEEF Organics CBD soap. Also a game changer. My RSD-sensitive/frequently irritated skin is loving it.

In addition to my hands, I use the balm on my knees, arms, wherever I hurt. It also calms skin irritation. And – biggest benefit – it enables me to avoid using the lidocaine.

At my last appointment, my doc asked how my hands have been. There was a part of me that worried about mentioning the balm. I seriously almost didn’t. Maybe I worried he’d change my other meds? I know, I know…. one has nothing to do with the other. But I told him. He said that if it helps, keep using it. It does and I will.

I’ve been learning a lot about CBD and pain relief. If you are interested in knowing more about the benefits, please don’t buy anything before you do your research. If you can talk to someone in person, even better. For example, if you take certain cardiac meds, you can’t use oral CBD products. That’s why it helps to speak with someone who has more than a random sign in the window. Someone who’s invested in promoting the safest, cleanest-sourced products will know about these issues and be able to help.

I’m a woman on a mission.

But for now, I’ll just continue to be grateful for the relief this product has given me. And I’ll keep my shouting to a minimum. 😉

Peace and painlessness,

Beck❤️

#leeforganics

#hiddenhemp

#thisiswhatsicklookslike

#rsdawareness

#crps

(Photos courtesy of my gal and this beautiful day!)

Hope springs….

“There is more to you than yesterday.”

I absolutely LOVE that quote. This speaks to me of hope. Hope for joy. Hope for calm. Hope for ——–. (Fill in the blank).

Yesterday, we spent a lovely Easter Sunday at my mom’s. Family is incredibly important – we’re a large, close knit group. So any time we have the chance to get together – in any configuration – is a good time.

My three youngest nieces were there. One of them saw my finger splint and asked why I was wearing it. Without delving too far into the complicated, I explained it to her. Later in the day, as we were cleaning up, she got very serious and asked, “Aunt Becky, will your hand get better?” I answered, “I think it will.”

I have no idea what’s down the road. None of us knows. But the one thing I’m certain of is that I’ll remain hopeful.

When I think of hope, I imagine it mostly for those around me. For my husband and daughter, my mom, for my entire family. For me, it’s existing in a state of positive energy. Not all the time, of course, but as much as possible. It’s so much easier than believing that nothing will ever get better, that nothing good can happen. It’s also about enjoying the little things: a great cup of coffee. A smile from a baby. Moments of laughter with my daughter. Those moments give me hope.

We’re moving along, trying to cope with a lot of external forces. Negativity, pressure, fear. It’s all out there. It’s easy to let it in. And once it’s in, it takes root. I don’t want that stuff in my head. I don’t need it. So, although it sounds like denial, I move along trying not to dwell. (Trying being the operative word) I do what I can, when I can, with whatever I can. I do the best I can.

I know what I’ve been through. The journey to now hasn’t been easy or nonstop fun, and that’s okay.

I’m still standing. Yeah, yeah, yeah!🎶

Seriously though, there is more to me than yesterday. There’s a lot more. And so I hope for what’s next. Whether it’s about me or someone else, I hope for what’s next and that brings me joy – big and small.

And that’s enough.

Here’s to hope, to the journey and to knowing that there’s more for each of us. ❤️

Peace and painlessness,

Beck❤️

#thisiswhatsicklookslike

#rsdawareness

#morganharpernichols