Just trying to stay awake….

The show is fast approaching and I’m in a flare. It’s exhausting, to be honest. 
But my sutures are OUT! Last Friday, I had a follow up with my dermatologist. The area where they biopsied the pyogenic granuloma has healed nicely. Since I was there anyway – and it was ten days post injury – I asked if they’d be able to spare me the ER follow up. A follow up that seemed unnecessary and probably expensive. Just to remove three sutures?!? No thanks. 
But our dermatologist is a sweetheart. His amazing nurse took them out and we were on our way in no time. 
Since then, I’ve been watching it carefully and it seems to be healing nicely. The only thing is the swelling and the altered sensation near where the cut was. It feels the way it would had I burned myself. Like a steam burn with a gnarly scar. Hey, I always wanted a weirder left index fingerprint! LOL. 
As I set up the costumes for the show next week, I’m trying to keep my stress level down and my energy up. It never works out that way, but it’s always good to put it out into the universe.
I had so much more to write this week, but fatigue and pain are ruling my after school hours at the moment. It’s easy to forget how physical it all is when you’re away for a while! Although, my memory is complete crap so I’d forget anyway. 😉

I’ll just leave it there. I know that many of you are coping with a lot right now. Losses, illnesses, job and family matters – all of the struggles that make life harder. Please know that you’re not alone. You matter. Your feelings matter. Lean when you need to. Let people help carry the load. 

You matter.

Wishing you a calm, low aggravation – low pain week because that’s what we all deserve. ❤️

12/6/19

12/10/19

Peace and painlessness, 
Beck❤️

#thisiswhatsicklookslike

#rsdawareness

#crps

Advocate, unglued…. advocate, rising….

If you follow my social media, you may have already seen that my efforts to make stuffing ended with a trip to the ER. Not the way I planned to kick off Thanksgiving.

But happened it did and I was in shock. Complete and utter shock. Having just returned from school (show prep is in full swing!) I was debating between chopping the vegetables for stuffing and taking a shower right away. I should have taken the shower. 🤦🏻‍♀️

My new Ninja chopper needed to be washed. Lining up what I thought was the sponge against the blade, I started my task. And then blood. Lots of blood. It wasn’t pretty. 

We have an ongoing joke in our house – (I’m pretty sure every family has their own version) – that the universal sign that something is wrong is when you hear me say “Ummmm…… Dave? Can you come here for a sec?” Calling my husband in that fashion means that he’s being treated to a bug/weird food/nearly impossible task/fill in the blank situation. When there’s no crisis, we can laugh about it. On Tuesday, when I called out that way for my daughter, she immediately knew something was wrong. And then I fell apart. 
In the midst of my fluttering around the apartment – calling out “I don’t know what to do. I don’t know what to do,” my daughter took over and managed to get me to the hospital. She was so calm. I alternated between laughing hysterically and crying every few minutes, mumbling, “I can’t believe I did that.” Over and over. Still, she was centered and reassuring.

I’ve had many, many medical emergencies (my own and those of loved ones) in my life. But – more often than not – I’m able to take charge and power through. That was not the case last week. 

I’d become completely unglued. It was surreal. As the nurse gathered supplies to suture my finger, my mind was racing. Hearing a familiar voice calmly saying, “it’s going to be okay. It’ll all work out,” made me look up. It was my daughter. The whole event felt like an out of body experience. But there she was – standing where I usually stand, saying the things I usually say, holding me up when I needed it most. 

Is there an advocacy gene?!?

She was amazing. I’ve relied on her during a couple of medical outings recently. Both times, I had to remind myself that the cool, collected young woman next to me was my baby. 

Like a phoenix rising, an advocate emerged. 

If I hadn’t been so rattled, I’d have told her on the spot. I’ve told her many time since. 

Plus, she also took over stuffing duty/Thanksgiving prep with my mom. They are an incredible team. 

Meanwhile, my finger is healing well. The sutures can come out as early as Friday! I’ve been avoiding sharp objects and learning to utilize my non-dominant, right hand. It’s been quite the sideshow.

Here’s to an uneventful, low pain week ahead.

Peace and painlessness, 
Beck ❤️
#isweariwasnttryingtogetoutofcooking
#thisiswhatsicklookslike
#rsdawareness
#crps

Concessions…..

I’ve been thinking about all of the things I’ve had to give over to my RSD/CRPS. It’s a looooong list.

Last Thursday, I gave over a seemingly silly thing: a pair of boots. If you’ve been reading for any length of time, they’re the amazing/fabulous/stacked heel boots I referenced in “Strides” on 4/1/19.

On Thursday morning, I left the house to run an errand and grabbed those just boots just for fun. We weren’t going too far, after all. I realized fairly quickly that it was a mistake, but decided not to turn back. I opted to hang in there, once more. The fun is done, where they’re concerned.

My knees have been so bad, even the short walk to a nearby store was just too much. And my right foot is definitely making all future footwear decisions. It’s just the way it goes.

The whole thing made me sad. Yes, it IS just a pair of boots. Yes, in the scheme of things, it’s not the end of the world. But if you knew how many “it’s not the end of the world” situations people with RSD deal with, you might empathize more. It’s not just RSD either. Anyone living with any chronic illness makes every decision based on the specific parameters of their illness. And those boundaries become smaller and tighter as the years go on. It’s like being in a room with the walls closing in.

I don’t want to constantly redraw my battle lines. I know I have to, but I don’t want to. Those boots made me feel tall (I’m not), strong (some days), and confident (I try). Giving them up before I was ready makes me feel weak and miserable. Even for a little while.

Believe me, I don’t want my knees to hurt any more than they already do. Or my back! And trust and believe that I don’t want to set off the burning in my feet. Especially since I’m currently prepping for the holiday show and the spring musical.

It’s the principle of the thing!

But, since they’re in good shape, they’ll be donated to our local Housing Works. And that always makes me feel good.

I’m just venting. We got home, I whined to my gal (she listened kindly), and set the amazing boots aside. Maybe they’ll bring intense joy to someone else. Here’s hoping!

In a bit of good news, my biopsy came back fine – as we imagined it would. It was a pylogenic granuloma, not a hemangioma. Doctor J. said that they’re often caused by trauma and a body’s over zealous immune response to that trauma. It’s actually very interesting. The site is healing well. I don’t think I’ll know, at least for a little while, how that area of my scalp has truly healed. We’ll see how it feels down the road.

So, my boots are no longer made for walking – or strutting, as the case often was. 😁

Wishing each of you comfortable “power shoes,” the chance to avoid making concessions, and a low pain week. We deserve it. ❤️

Peace and painlessness,

Beck❤️

#thisiswhatsicklookslike

#rsdawareness

#crps

Forceps with teeth, one word time machines, and recovering…..

Last week was intense. A few things happened that I’ll be writing about in future blogs, as they need time to percolate. But Friday? Friday was a whirlwind. 
I went to the dermatologist to see if the hemangioma had changed over the past few weeks. It feels like it had but since I couldn’t see it, what did I know?!? 
When I arrived, I felt like I’d stepped back in time. Leaving the office was someone I haven’t seen in at least 33 years. 
Back in my high school days, I volunteered with UCP, United Cerebral Palsy of NYC. Every Saturday, we’d meet and share a few hours with our friends. There’d be music and snacks, games and activities. One member of my group was Jack.*  Jack loved dancing, puzzles, and telling jokes. We always had fun. 
When my work schedule changed and I could no longer volunteer with UCP, Jack was very upset. That last day was very sad. For a while, I’d occasionally see Jack in the neighborhood. But it’s been decades since our last encounter. 
I had just gotten settled in the waiting room. A woman said, “Jack, can you bring this to the woman at the front desk?”
And then a voice I immediately recognized said, “okay.” One word… ONE WORD in his unmistakable cadence transported me back to being 15 years old. I turned in time to see him hand over the form, get his coat, and leave. Struck by the suddenness of a missed opportunity and the absolute joy of seeing him after so many years, I was a bit lost in thought when my name was called. I’ve always wondered how he was. How all of my group has been over these many years. 
That’s when my joy ended. My doc examined the monster – it hadn’t changed in size. But I’d nearly nicked it two days earlier (while combing my hair) and it burned. That concerned him. He also explained that, since it was vascular, accidentally opening it could lead to bleeding. So it was immediately decided – by him – to remove it on the spot. Here’s how that conversation went:
“Let’s remove it. You don’t want that on your head.”
“Okay….. so when should I set that up?”
“Right now! Let’s do it now. I’m going to let Dr. J* with the very gentle hands do it. (Proceeds to page Dr. J and someone named Alicia*). Unless you have somewhere else to be… (pause for two seconds) you don’t? Good. Excellent. Let’s do it.”
😂😂😂😂😂
The only reason I’d have postponed it would be fear. He clearly had my number on that. And I clearly wasn’t getting out of there WITH the hemangioma. So consents were signed, prepping was done, and Dr. J “with the very gentle hands” arrived.
The first words out of his mouth were, “Alicia, I’ll need a forceps with teeth.”
What the heck?!?! I didn’t want to know that. At ALL.
The worst part, he said, would be the injection of anesthetic. That much I knew. It burns at first. But he explained that, once the 15 minutes to let the anesthetic kick in were up, it would only take about 5 minutes max! Time limited discomfort? I’ll take it.

They’d use the aforementioned forceps with teeth to remove the hemangioma, then cauterize the wound to stop any bleeding. I didn’t want to hear anything during the procedure, so I kept my earbuds in. And, as promised, it was over in minutes. I’ll even go so far as to say that Dr. J does have a gentle touch and it wasn’t the worst procedure I’ve ever done at the last minute.

Before I left, I asked what would cause me to develop a hemangioma at 46, especially since they’re generally seen in babies. Dr. J explained that it could be from trauma. Had I experienced any head injuries? (After which fall??) It could be a sign of “over healing,” meaning the immune system goes into overdrive after an injury. It could even be from something as simple as a pimple or bug bite! He asked if that sounded possible, given my medical history. When I relayed that to my husband, we both cracked up. I spend 90% of my life dealing with a body in overdrive. My immune system is scrambled constantly. It makes a lot of sense.

So, the monster is gone! And now I’m treating the wound, (that will scar as an indented crater. Yay weirdness!), twice a day with bacitracin. As this oddity was on the back of my head – lower right occipital quadrant to be precise – I worried they’d accidentally remove a bunch of my hair. He said it wouldn’t happen. But I saw the biopsy jar. 😒 It wasn’t too bad, I was only slightly concerned that I’d get weird looks on the subway for an imaginary bald patch that had been recently cauterized. Ugh.
I’ve also had to break my “no ice” rule. The wound has been slightly irritated, so I’ve used carefully wrapped cold packs on it, but just for short periods. My husband says it looks like it’s healing well.
It’s over! That’s what counts. A procedure without a ton of drama?!?! That’s new. Personally, I’ll take no procedures and no drama, thank you very much. But if we have to do stuff, we have to do it.
So here’s to:
good memories! (may we have them)
no drama (may we avoid it!), and easy procedures (may we not need ANY!)!!
Wishing you a low pain/no pain, low aggravation/no aggravation kind of a week because that’s what we deserve.
Peace and painlessness,
Beck❤️
(*names changed for privacy)
#thisiswhatsicklookslike
#rsdawareness
#crps

Not nothing….. ditching The Toxics …… choosing us….. 

I had an acquaintance – had being the operative word – who’d ask how I was. If I answered honestly about my health, they’d say, “That’s nothing, you’ll never believe what happened to ME.” 

I’d always think, “well, it’s not ‘nothing.’”
After a few years, I stopped answering honestly. “I’m well, thanks.” They’d changed their approach and say, “well, you’re lucky. But I’m not. Guess what’s happening to ME!” 
Yes, getting diagnosed with multiple rare health conditions and an autoimmune disease is lucky. (Commence eye rolling now).
They apparently never got the memo that it isn’t a competition. And it took me a long time to realize that those people need to be handled in a certain way….. minimally
Then there are the people who bring lots of toxic baggage everywhere they go, dumping it on anyone within a ten mile radius. We have all known them. Some of us still carry their weight, unable to unload what’s been continually heaped onto our backs. 
I’ve known several people who fit into each of those categories: The Toxics. (That sounds like a band). Some are long gone. Others, not so much. I get contacted regularly by several people who’ve not received the message I’ve sent many times: “BYE! Have a nice life!” 
It’s really important – whenever possible – to release ourselves from the grip of toxic people. I know it’s sometimes easier said than done, but there’s liberation when it can be managed. Room to breathe. And better air to inhale! 
I believe that we need to choose the path that hurts us the least. And that road looks different to each of us. 
There’s nothing selfish about it. Read that again. It’s not selfish! 
You’re probably wondering what brought this blog on. It’s not a “this-incident-set-me-off” type of thing. It’s a lot of different things that became one constant: Ditch this person. (Or people, as the case may be). Breaking away from judgement, from things that have a detrimental effect on our minds and bodies? Priceless. 
Whether it’s the doctor who only sort of takes us seriously, the friend who negates our life stuff, a family member who ________ (fill in the blank. The threshold for family drama is different for all of us). Whoever it is! The bottom line is that it’s okay, and waaaaaay healthier, to choose ourselves. 
Choose yourself
Wishing each of you liberation from The Toxics in your lives. Here’s hoping that you have a low pain/no pain kind of a week, because that is what we deserve. 😉
Peace and painlessness, 
Beck❤️
#ditchthetoxics
#thisiswhatsicklookslike 
#rsdawareness
#crps
#daniellkoepke

Superlative derogatives…..

I had an experience last week that stuck with me, upsetting me so much that I wish I’d done something about it.

My doctors are part of a huge hospital system in NYC, so it’s not uncommon to see patients arriving/departing on stretchers via ambulance.

On this day, a small-statured, elderly man lay bundled up on a stretcher. He was accompanied by two paramedics.

As they waited, the young woman who did most of the talking said, “how are you feeling?” The patient responded, “I have such a headache. My stomach still hurts and I’m nauseous. I’m just not myself. That’s what happens when you’re in your nineties, I guess.” She answered, “I’d have thought you were in your eighties! You look great.”

STRIKE ONE. Inappropriate response. Translation: you don’t even look sick! It might not seem bad to you, but that is Invalidation 101. Don’t tell someone laying on a gurney how great they look. Wrong time, wrong place.

She spoke to her partner for a moment, then – turning back to the patient – continued: “I wish all of my cases were as cute as you.” She smiled at us and laughed a little. He hadn’t heard her and asked, “what was that?” She answered, “I said that you’re amazing.”

STRIKE TWO. CUTE?!?! And laughing at her own comment and expecting everyone else to join in?? No. No. No.

The gentleman then complained of a wave of nausea and vomited into the small bag provided by the paramedic. He apologized to the room at large. It was only them, another man, and myself. I felt awful for him.

And then the worst exchange happened, at least as far as I’m concerned. She turned back to him and said, “Papa, you’re so lucky though. I know for a fact and I can say this – that there are people who have it so much worse than you do. So much worse. You’re blessed.”

STRIKE THREE. Never, ever, EVER tell another person that someone has it worse than they do. It’s an unkind, invalidating comment and basically forces the person to halt all commentary that could be perceived as “complaining.”

I sat there, jaw dropped, and seething. And what did that patient do? He said, “you’re right. I shouldn’t complain.”

The only words I could get out were, “You weren’t complaining. You were answering her question about how you were feeling which isn’t great, at the moment.” He smiled weakly at me and closed his eyes. She just looked at me like, “why are you getting involved?” It was only because she spoke loudly that no one could have missed that lousy conversation.

She stood there, telling an elderly man who was in pain & holding a vomit filled sick bag that people had it worse than him. He should….. what? Feel grateful for his condition? All that mess did was shut him up and further diminish his feelings.

Someone has it worse. (Commence rage screaming).

You’re so cute. (When said to an elderly person).

You look great. (Inappropriate attempt to compliment someone who’s older and ill when you know they don’t feel “great”).

These are all hot button comments for me. I’ve spoken to elderly people who’ve said, “I hate when people tell me how supposedly great I look. I know what I look like.” And “I know how bad I feel. I wish they just wouldn’t say anything.”

I felt helpless in that moment because I didn’t want her to retaliate against him on that ride. And I have no evidence that she would have, but I didn’t want to start a massive confrontation. Especially since he was truly in pain and unwell.

But I’m asking everyone to read and share this blog. And remember the following:

It’s not okay to tell an elderly person that they are cute.

It’s not okay to say, “but you look great,” when they’ve told you how bad they’re feeling.

And most of all, it’s NEVER EVER EVER okay to tell another human being that someone has it worse than they do. No, no, and a side order of NOPE.

PLEASE don’t do it. I’ve had it done to me so many times. And I can only imagine how bad it feels to someone who’s outlived their loved ones and many friends by decades – (and who very likely needs human contact and conversation) – to be told those things. It’s demeaning. And it negates their experience.

It negates all of us.

That’s my soapbox for today. It’s Color The World Orange Day and I’m advocating for all of us. I’m advocating for myself. I wish I’d been able to advocate for that gentleman. He deserved better.

We all do.

Wishing you validating commentary, positive interactions, and a low pain week.

Much love, peace and painlessness,

Beck❤️

#thisiswhatsicklookslike

#rsdawareness

#crps

#colortheworldorange2019

The Great Reset… Dr. Jekyll and Mrs. Morphine…. and “better”…….

m

If you’ve been reading my blog for a while, you all know that I love a good song tie-in. And if it’s Eddie Vedder? Come ON! (I can’t help it). This week is no different. So let’s dive right in.

I encourage each of you to listen to “Better Days.” The lyrics will likely resonate with everyone.

They helped me through a difficult episode last week. Without giving too many details, I’ll just say that I was faced with an unexpected reality check. It pushed – no, shoved – me down a painful, emotional rabbit hole. The song gave me a ladder back to the surface.

It’s hard to look all the way back to the start of my illness. Partly because I loathed who I was back then, partly because I don’t remember 95% of it. I know it wasn’t pretty. I think the nearly 7 years of round-the-clock morphine hit a reset button in my brain – physically and memory-wise. It’s what I believe anyway. My docs aren’t quite as convinced.

They told me that it wasn’t likely. Sort of like the time when I explained that my period had altogether stopped 2 or 3 months after the morphine was initiated but started up again, 7 years later, a few months after the morphine had stopped. Everyone thought that was bonkers too. Seemed like an obvious correlation to me, but what do I know? (Commence eye rolling).

Anyway, back to the song. Living with a chronic illness is a full time job, even in the best of circumstances. Early on, I mostly told my husband things when I knew I couldn’t hide them anymore. But the effort of keeping things looking perfect for everyone else’s sake, especially for my very young daughter, was exhausting. And it was obviously a failed campaign. Even as a child, she could see it. She saw it all. Now that I’m not perpetually hobbling around like a grenade missing it’s pin, I am able to cope far better.

As my daughter got older, I was able to speak more freely. Taking the mask off and saying, “this is a bad day,” and “I’m in a lot of pain today,” made a huge difference. The hardest of all was saying, “I need help.” It’s still hard. But it was finally okay to admit that I was not okay. And that, sometimes, I’m still not. No more secrets, no more “it’s all fine!” when it’s clearly not.

But back to my morphine theory. I function amazingly well most days. Well enough that it’s easy for me to forget that I’m generally one spasm or flare away from trouble. Easy enough to forget that, without my carefully cultivated medication regimen and years of experience, I would be incapacitated. No lie, no exaggeration. And, (although it wasn’t the healthiest thing), all of those years of carefully honed denial skills and “move forward” practices allow me to get on with things today, no matter what.

How great it would be if we could ALL be

honest with those around us? Pain scale? Horrifying descriptives? Say it all!!

This is why we need our support groups. Not everyone has the freedom to speak the truth about their pain and accompanying issues. To be able to say exactly what’s what validates the experience, validates our humanness in dealing with all of the medical crap.

Actually, wouldn’t it be great if we could SCREAM whenever we’d like to??? I mean, this is New York City…. I could probably get away with one or two without causing too much of a stir. LOL. And I mean everyone, illness or no illness. We ALL need scream therapy. Even if it’s a scream of positive release, not just of extreme frustration.

The following lyrics literally raise me up:

“Had to somehow greet myself, read myself. Heard vibrations in my cells, in my cells. Singing, ‘Ah-la-la-la, ah-la-la-la.”

And:

“Fill my heart with discipline

Put there for the teaching

In my head see clouds of stairs

Help me as I’m reaching

The future’s paved with better days!

Not running from something,

I’m running towards the day –

Wide awake.

A whisper once quiet,

now rising to a scream

right in me.

I’m falling, free falling

Words calling me,

up off my knees.”

I can forever regret my past. I can beat myself up for not coping well, for not being my best self in those early years. Or I can pick myself up and continue on with the great reset, moving toward “better.”

The first option is easier, it needs no special invite because it’s always in the back of my brain. Not deciding for others what I think they can handle has been liberating. Not hiding bad news or tough hurdles has been liberating. I’ll forever work on not being hard on myself.

But I’ll keep reaching, keep running, keep working towards “better.” I owe that much to myself.

Wishing each of you better days and the knowledge that your experiences have gotten you here but they don’t define where you go next or how you make the journey.

Peace and painlessness,

Beck❤️

#thisiswhatsicklookslike

#rsdawareness

#crps

#eddievedder

#betterdays