I’m in here, just under a lot of weird layers….

This won’t be a long one. Typing is hard and I make a mess of it. But I’ll try. Here we go.

I believe I’ve reached an emotionally reactive phase of this nightmare. I’ve cried over it a couple of times. I’m also angry. Angry at my new limitations. Angry at that stupid clot. I’ve also had a couple of panic attacks.

I want to understand why. Or at least investigate to try to get an answer, one way or the other. “It happened because of…..” or “we’ll never know.” But I need to have something more to live better with this. To make some kind of peace with this situation.

I’ve chameleoned over and over, many times, over the years. But this version of me is the absolute hardest one to exist with, in my opinion. Mainly because I feel like I’m relearning so much.

Things like: Can my eyes adjust to looking at certain patterns, or is it too much for my eyes? Or my brain, really. Cobblestones, textured tiles – some of them are overwhelming for me. Are these areas of the sidewalk okay to walk on? Will I stumble? Have I said this word before? Do I sound like I’m slurring my words? Am I just tired? Why does my leg feel weak? Maybe this is far enough and now we need to head home. Maybe I’ll never get further than the corner store. Hopefully, I will, but who knows?

And my inner monologue is too quiet. So much so that it’s freaking me out. I painted my imagined renditions of it, the before and after. The colorful one is before, I call it “Constant Chaos.”

I hate being uncertain like this. And I literally have no control over anything. My brain is healing. Someone said having a stroke is like having your brain kicked from the inside. Another person said that our brains broke and need to repair themselves. I hate both of those images. But I think they’re right. My neurologist said my brain is reconnecting all of its circuits. And that takes time. I wish I was more patient.

The second is after the stroke, when I’m sitting on my own. It’s called, “It’s too quiet in here.”

The last one is called, “I’m in here.” And it’s how I feel when I’m with my family.
I started them as a sort of therapy to exercise my left hand. Then it became emotionally therapeutic too.

I walk every day. Even if I’m tired. Please don’t misunderstand where I am in this. I know how very lucky I am and how much I’ve retained and regained. I’m just upset because having a stroke is extremely hard. My eyes, thank goodness are back to normal. Except with certain patterns. My left side is weak, but it’s mostly problematic when I’ve been active for a while. I just feel like a ticking time bomb and I hate that sensation. It’s scary and exhausting. Worrying about every sensation and headache. I’ve always had them. But now it’s different because I wonder if it’s just a headache.

I’m getting rest though. I’m still putting myself to bed and actually getting some sleep every night. It’s awesome. I’ll keep it up for sure.

Pain levels have gone up a bit, but that’s okay because it’s normal. Even that feels acceptable to me.

The good news is that I have appointments with a stroke specialist and a cardiologist in February.

Just please say a prayer and keep a good thought for me. I greatly appreciate them.

Here’s to finding strength when you need it most. Courage too. And here’s to better days to come. ❤️

Peace and painlessness,

Beck ❤️

#thisiswhatsicklookslike #rsd #crps #arachnoiditis #autoimmune #migraine #sacroiliacjoint #facetjoint #backpain #medicalmarijuana #carpaltunnelsyndrome #cubitaltunnelsyndrome #patientadvocacy #painintheBECK #phantosmia #dextroscoliosis #thoracickyphosis #lumbarlordosis #stroke #thalamicstroke

#thisiswhatsicklookslike #rsd #crps #arachnoiditis #autoimmune #migraine #sacroiliacjoint #facetjoint #backpain #medicalmarijuana #carpaltunnelsyndrome #cubitaltunnelsyndrome #patientadvocacy #painintheBECK #phantosmia #dextroscoliosis #thoracickyphosis #lumbarlordosis #stroke #sendit #senditsociety

This week, I decided to write a letter to myself, one that I can look back at a while from now to remind myself how far I’ll have come by then.

I’m having a hard time acclimating to having had a stroke at 48, this “new hardest thing ever.”

I still have to wait to figure out the why, that irks me to no end. Truthfully, we may never know why it happened! That’s the other difficult reality. It’s hard to know if I need to change anything under these circumstances. But in order to get through every day, I have to remind myself of a few things. Since we’re all going through a lot, I decided to include all of you too!

Dear Beck (please feel free to insert your own name here),

I’m struggling. There I’ve said it. I’m having a hard time.

This is a new “hardest thing that we’ve ever had to deal with” and it’s making us sad/scared/helpless/grouchy/hopeless at times. We’ve dealt with new hardest things ever before and made it through. We’ll do it again. But it’s going to take time.
Some very kind folks have suggested the following:

1. be kind to yourself. This isn’t going to fix itself overnight. It only just happened and you were told it might take months to get back to “normal.”  
2. Be kind to the people around you. You can’t rush them to act normal any more than you can rush yourself. They’re as scared and worried as you are. 
3. Ask for help (this is a historically hard one for you) you’ve started to do it. Keep going! 
4. Be patient. This is a tough one. Be patient with yourself and everyone around you. Everyone is literally doing the best they can. Stop trying to reinvent the wheel overnight, it’s not going to happen! Slow down and accept where you are. 
5. Meet yourself where you are and be good to the you of right now. She’s (insert your own  pronoun) coping with a lot, even floundering a bit. But she’s hanging in there.  

Sincerely,

Beck ❤️

I know these seem very simple, but they’re important. We’ve had to go waaaay back to basics here, but maybe that’s a good thing. Maybe that’s what it takes when something super dramatic happens. Maybe we have to simplify our lives and not take anything for granted. I know we’re not.

Here’s to getting through the new hardest things ever. Here’s to the people around us who care about us. They’re struggling too. Here’s to seeing a crisis from the rear view mirror. Here’s to all of you. Thank you for the kind messages and support. I truly appreciate it.

Peace and painlessness,

Beck ❤️

#thisiswhatsicklookslike #rsd #crps #arachnoiditis #autoimmune #migraine #sacroiliacjoint #facetjoint #backpain #medicalmarijuana #carpaltunnelsyndrome #cubitaltunnelsyndrome #patientadvocacy #painintheBECK #phantosmia #dextroscoliosis #thoracickyphosis #lumbarlordosis #stroke

*PSA: I want to say first that if you’re experiencing unusual symptoms, if the people with you claim you’re not functioning or acting like yourself, call 911 and get yourself to medical care ASAP. This is not a drill! *

On Christmas Eve, we were running a few last minute errands in the neighborhood. We were just up the street at one of the local shops. I suddenly felt too warm, a bit nauseous, and slightly dizzy, and stepped outside for some air. I thought I was okay. I wasn’t.

I told my daughter that I’d go ahead to our next stop, a deli located a couple of blocks up from where we were. Except I couldn’t walk properly. I was crashing into everything. She caught up to me & I asked her if I could lean on her. I’m lucky I didn’t take both of us to the ground. She managed to get me to a bench outside a small cafe, then called my husband, who was just down the street at our apartment. She sounded scared but remarkably calm. I could hear the fear in her voice as she said, “Mom, you’re not acting like yourself. This is not normal.” The next thing I knew, my husband was helping me up & they called my sister (the nurse). She told them to call 911 immediately. I shouted my objections, or at least I thought I did. I threatened not to speak to anyone ever again who called for an ambulance. I knew something was wrong. But I never would have thought it was a stroke. A stroke?!?!? For crying out loud! No way!

And yet, that’s what it was. I had a stroke on Christmas Eve.

My memories of this experience are less clear than theirs, I’m sure. I heard the paramedic say to his partner that I’d clearly failed the stroke protocol tests, that they needed to give neuro a heads up…. to get them on standby, which they were. As soon as I was pulled out of the ambulance, we were met by a team of people in scrubs.

Everyone was talking at once. I vaguely recall my boots being pulled off my feet, my sleeves being dragged up to make room for two IV lines. Ouch. I was afraid they’d cut my shirt off like they do on TV. They didn’t, which was good because it’s one of my favorites. I’ve had it for a lot of years – a super comfy, long sleeved, black and white striped, Joe Fresh t-shirt. I think I got it when JCPenney opened up in the Manhattan Mall. Neither is there anymore. But my shirt still is and I didn’t want it removed in haste. It wasn’t.

But I digress.

Then it seemed like everyone was asking me to grip their hands as hard as I could and answer “how many fingers am I holding up?” If no one ever asks me that again, it’ll be too soon. Trust me. I never want to hear that question again. I definitely answered wrong so they started asking me other questions. “How many people are around your bed?” “How many people are leaning on the bed?” I obviously didn’t get the answer right then either. I was guessing to make them go away. But they wouldn’t. Thank goodness for them! I had my stroke at around 3:30pm. And at 5 pm, I was given TPA or tissue plasminogen activator. A heavy-hitting, blood blot dissolver used within 3-4.5 hours after an ischemic stroke (strokes that are caused by blood clots, not active bleeding).

After you receive this medication, you’re required to be monitored for at least 24 hours in the ICU. Unfortunately, there wasn’t a bed. So I stayed in the neuro overflow area in the ER. The docs, nurses, and staff there are awesome. I’m super lucky. I’m alive and here to tell the tale. Unfortunately, I saw quite a few people admitted after having had strokes. Geez. We should form a band and sell t-shirts. There were too many of us.

I’ll be on baby aspirin and Lipitor for the foreseeable future, but I’m okay with that. I regained my left side and my vision, thank the universe! And I’m walking around independently! You’d think it wasn’t a big deal, but it is. I’m using my cane again, temporarily. It gives me a sense of stability and security. I don’t want to rely on it too much. But I’ve only been outside three times since we’ve gotten home, so that’s okay. I’ll give myself time.

I’m not myself yet. But my neurologist says that’s to be expected. He estimated three months until I’m fully “recovered.” I hope it doesn’t take that long. That feels like an eternity to me. It’s not, I know. But you know what I mean. I want to take a long walk. I want to carry a grocery bag. I want my family to not be worried about me. I know that won’t stop in three months, but you get where I’m going.

I’m still here. 🎶”Good times… bum times….. I’ve seen them all and, my dear, I’m still here.” 🎶Strokes can kill people. No joke. Please take your symptoms seriously.

I think I truly grasped how bad it must have been for them when my husband marked the time he saw me really move my left arm: 8:17 pm on Friday night. I lifted my arm to fix my hair. I vaguely remember him calling the nurse over and saying, “She moved her arm! She really lifted her left arm!” He says he’ll never forget it. 😞

A stroke is a medical emergency. Time is of the essence. I had two CTScans and an MRI. They needed to rule out active bleeding and additional clots. They’re concerned that my PFO (patent foramen ovale, aka the hole in my heart) was the conduit for the clot to get to my brain. One of my homework items is to get a new cardiac work up, an echocardiogram, etc. That’s in the works as I type. And I need to follow up with a stroke neurologist. My doc is awesome but he said that CVA’s are not his specialty. So I need to work with someone who does that all the time. It makes sense.

I mentioned that I’m scared that I’ve got a time bomb in my head. After reassuring me, he said that he wants me to remember that I know what my headaches feel like, that I know myself. If things ever feel like last Friday, call 911. If the headache feels severe or different, call 911. But he doesn’t want me living in a state of panic. I’m trying not to. It’s easier said than done.

I keep joking with my family that I’m going to walk around shouting, “I had a stroke!” And follow it with ridiculous demands and statements. I’ll become a brat. It’s cracking me up. Maybe that’s the key, normalize it by joking around about it. Because I can’t believe it happened. I can’t believe that I had a stroke on Christmas Eve.

But I did. And I’m so grateful to be here to write about it and to hug my family and tell our gal that she was brave and a total badass last week, and to see her and my husband, and to laugh at stupid things with my mom and siblings, and…. And…..And……

Here’s to being alive. Here’s to a long list of “and’s.” Here’s to reaching the other side of a medical emergency. Here’s to each and every one of you – thank you for your kind words and support. Ans here’s to the new year. May 2022 bring good things to all of us.

I’m not usually a new year’s celebrator, but I’ve got a lot to celebrate right now. ❤️

Peace and painlessness,

Beck ❤️

#thisiswhatsicklookslike #rsd #crps #arachnoiditis #autoimmune #migraine #sacroiliacjoint #facetjoint #backpain #medicalmarijuana #carpaltunnelsyndrome #cubitaltunnelsyndrome #patientadvocacy #painintheBECK #phantosmia #dextroscoliosis #thoracickyphosis #lumbarlordosis #stroke #lastblogoftheyear!

#thisiswhatsicklookslike #rsd #crps #arachnoiditis #autoimmune #migraine #sacroiliacjoint #facetjoint #backpain #medicalmarijuana #carpaltunnelsyndrome #cubitaltunnelsyndrome #patientadvocacy #painintheBECK #phantosmia #dextroscoliosis #thoracickyphosis #lumbarlordosis

Injection update, the holiday show that wasn’t covid testing, & an unexpected hospital visit.

It’s Christmas Eve. I know I say it every year, but it feels like the last few weeks have FLOWN. I can barely remember what’s happened since thanksgiving. I didn’t feel like the year was rushing away from us until a few days after thanksgiving. Then, it seemed as though we were skipping days just to get here! I know how ridiculous that must sound. (I can’t explain how my brain works. It’s a weirdo, we know this!) 😂

This week was all over the place. The holiday performance ended up being postponed for a few reasons, all of which I support. I have to say that prep for this one was the easiest I’ve it. In the ten years I’ve worked on these shows, I’ve never created looks for less than 60-70 students. This time, it was only 22! And one piece of choreography, not 20-30! And yes, it was usually just me backstage until I finally got a crew of kids who were interested in costuming. But that only happened a couple of years ago. Anyway, this one was a breath of fresh air. It’s amazing, the fun you can have with a plain, white t-shirt, silver paint, sequins, and glitter blast spray. I nearly forgot about the headpieces! I went to a local discount store and bought some silver glittery leaf garland. Then I took it apart and sewed four to each headpiece. Under the stage lights, it looks absolutely beautiful. However the kids move, the light catches the glitter. It’s like snow! But, for now, it’s all safely packed away until the new year.

This week also brought my first covid test. It was negative, thank goodness. I’d never have left it to the third paragraph otherwise. I have to say that those 15 minutes were unnerving. I’d been exposed and knew I needed to test, but it didn’t make any of it easier. Especially since I have to wait to get my booster. Once my 6 months were up, I’d anticipated getting it done immediately.

Then my injection happened and everything was pushed back. Steroids and vaccines are apparently not a great combination. So, the first week of January, I’ll finally have my third dose. That can’t come soon enough.
Speaking of my injection, I’m not entirely sure what to make of it. The best thing about it is that I’m not having the lock/spasms every day. That is HUGE. The iffy thing about it is that I had two big lock/spasms earlier in the week.

The first happened when I dropped a receipt and had to pick it up. As soon as I started to stand, I got stuck. That was fun. I looked like a slow motion robot trying to wake up. 😬😂
The second happened the next day. It wasn’t quite as dramatic as my robot-coming-to-life moment from the day before. But it freaked me out.

I’ll take the major win of not having to deal with these nonstop. My upper back spasms have filled that gap, though. Unfortunately. There’s never going to be a time when everything is calm and pain-free, I know that. But I’ll take a reprieve whenever I can get one.

Something else completely unexpected and scary happened today When I woke Friday morning, I had a brief episode of spins. I felt like I was on a carnival ride. But it passed soon after. Then, at about 3:30 in the afternoon, we were out running errands and I felt overheated and dizzy again. I stepped outside to get some fresh air but couldn’t walk in a straight line. My eyes couldn’t focus either. My strength was diminished also.

It turns out that I had a stroke! They did a ctscan twice. And gave me a TPA treatment and it did it’s job because everyone’s saying I’m looking better than yesterday.

Here’s to being home with loved ones, being healthy and pain-free (or close to it), and to calm, quiet holidays.

Peace and painlessness,

Beck ❤️

#thisiswhatsicklookslike #rsd #crps #arachnoiditis #autoimmune #migraine #sacroiliacjoint #facetjoint #backpain #medicalmarijuana #carpaltunnelsyndrome #cubitaltunnelsyndrome #patientadvocacy #painintheBECK #phantosmia #dextroscoliosis #thoracickyphosis #lumbarlordosis #tia #stroke

#thisiswhatsicklookslike #rsd #crps #arachnoiditis #autoimmune #migraine #sacroiliacjoint #facetjoint #backpain #medicalmarijuana #carpaltunnelsyndrome #cubitaltunnelsyndrome #patientadvocacy #painintheBECK #phantosmia #dextroscoliosis #thoracickyphosis #lumbarlordosis

Thursday afternoon:

Life would be positively dull without the occasional surprise or curveball. Right? 🤦🏻‍♀️😬
I actually like dull. I thrive on it. But, alas, that’s not what the last two weeks have been. This week, I’ve been working on the winter show, making changes that will make my life much easier. And the kids seemed to appreciate my plan. All it took was some silver paint, some glitter, and a few other little odd and ends. And then, voila! Inexpensive, sparkly costumes for the win!

Curveball #1: my injection procedure was supposed to take place earlier today. But I received a call yesterday evening about a technical issue that meant the whole thing needed to be rescheduled until Friday morning. Arrrrgh!

Without the machine, there is no procedure. The injection involves a carefully and slowly threaded catheter that is constantly being monitored and photographed. It takes (what feels like) a long time to get to the proper site. Once there, the injection doesn’t take very long. Then they backtrack.

I need to get this done. The intense and very painful spasms & locking are out of control right now. I literally can’t take it anymore. Let’s hope I actually get it done in the morning.

Friday morning:

Well, it’s done! It was waaay faster this time. And – much to my annoyance – the doctor that assisted my doc was on the condescending side. When I mentioned that I suddenly had pain in my left lower back (the shot was for the right side), she said, “well…. You DID just get a needle in your back.” Seriously?!?

I honestly felt like saying, “I did?? Is that what happened?” It bugged me. But I was relieved to be done with it. The whole thing was over quickly and then I was on my way.

On the way back home, once I was on the subway, my right upper back went into spasm. It was painful and aggravating, but at least the locking part is still numb-ish.

After I got home and settled, my left leg started feeling like one of those jars of colorful sand. Layer on layer of heavy sand, making me feel like I’m dragging my leg along. It’s exhausting, to be honest.

But it’s done! And I’m glad. Hopefully, fingers crossed, it’ll work to calm everything down. When I asked my doc why the locking spasms were happening so frequently, he said it was likely due to increased inflammation. That makes sense.

Curveball #2: He also said I can’t get my vaccine booster for two weeks! The steroid would interfere with the effectiveness of the booster. 🤦🏻‍♀️ As disappointed as I was/am about it, I’m relieved that I found out before going. My appointment is set up for early January.

So that’s that. Tonight, I plan to rest. I’ll finish the headpieces for the show over the weekend. It’ll all be okay.

Here’s to hopeful planning.😉

Peace and painlessness,

Beck ❤️

#thisiswhatsicklookslike #rsd #crps #arachnoiditis #autoimmune #migraine #sacroiliacjoint #facetjoint #backpain #medicalmarijuana #carpaltunnelsyndrome #cubitaltunnelsyndrome #patientadvocacy #painintheBECK #phantosmia #dextroscoliosis #thoracickyphosis #lumbarlordosis

#thisiswhatsicklookslike #rsd #crps #arachnoiditis #autoimmune #migraine #sacroiliacjoint #facetjoint #backpain #medicalmarijuana #carpaltunnelsyndrome #cubitaltunnelsyndrome #patientadvocacy #painintheBECK #phantosmia #dextroscoliosis #thoracickyphosis #lumbarlordosis

[Author note: I wanted to preface this week’s blog by saying that I believe in therapy. It’s been very good for me. I’ve had bad therapists and truly great ones. It’s with every confidence that I recommend it, but each of us must make that decision for ourselves].

She sat across from me, pad of paper on her lap. Tapping her pen a couple of times, she looked up and said the thing I’d been dreading, “perhaps it really isn’t as bad as you think it is. How about we try reframing it?” And that’s when I knew I wasn’t ever coming back to this office. How do I reframe agony?

Finishing the sessions as promised, I got up and left. It was my last required visit. When she’d asked about scheduling the same time next week, I declined. When she asked why, I think I said something about checking my calendar. She intimidated me.

But I was d o n e. Done with this. Done with her. Done with therapy.

That happened a lot of years ago. But it’s seared into my brain. It was humiliating and I truly felt like that therapist was trying to rewrite my script. MY story. Attempting to force me to change the way I was feeling – literally feeling – the physical pain of my body.

In my 1970-80’s childhood, I’d heard things about therapy. Mostly things along the line that people who went to therapists were “crazy” and “disturbed.” They were featured on tv shows in institutions and straight jackets. Not exactly the ringing endorsement I would want, going into it myself. I felt backed into a corner.

But I went because, prior to getting my pump implanted, I was required to speak to someone. Everyone on the team making sure I’d made the choice on my own, that I was ready for all that having a pump entailed. My then-doctor had encouraged me to go quite a few times over the years anyway, but he didn’t explain it as well as my current doc did.

As I’ve said before, my former doc wasn’t really comfortable with my rather impressive range of emotions. And he’d seen them all, or most of them. When he said, in response to my being upset at one appointment, “you should really speak with someone.” I translated that as: you should really speak with someone who’s not me.” I was wired to reject that notion. After all, I wasn’t “crazy.” I wasn’t “disturbed.”

My biggest fear about therapy at the time was that they were going to rewrite my narrative, as if I believed the things they were pushing. I was terrified that they’d say it was “all in my head” and that I believed that too. I feared their power, their ability to influence my care, my future. If they shut me down, if they didn’t believe me, I’d be stranded without a lifeline. Whatever they wrote about me could potentially influence other doctors. I absolutely didn’t want that to happen. It went so far as me worrying that, if I was having a better pain day and told my doctor, that they’d feel vindicated somehow. That it really wasn’t as bad as I claimed.

I knew I was in pain. I knew it was as bad as I said it was! No one else could tell me otherwise. Some doctors made it sound as though I’d imagined the whole thing. As if, by “reframing and thinking differently,” all of my issues would magically disappear. If only it were that simple!

And, of course having CRPS – a condition unverifiable by blood tests or scans – made it more doable – at least as far as I believed. My honest thoughts were that they were in league with each other, trying to undermine me. Talk about paranoid! But this is what some healthcare practitioners did! And some still do! And I was too vulnerable to truly stick up for myself.

Rewriting someone’s pain narrative is a dangerous, unethical thing, at least in my humble opinion. No one has that right. I’m sure it wasn’t done maliciously, but I considered it to be medical gaslighting. They made me question myself, question my sanity at some points. And, however dramatic that sounds to you, (and even to me now), trust me when I say that this is nothing compared to how it was. I was lost.

The very people I was supposed to trust to get me through the worst times were making me feel unsure and unsafe. I had a lot of baggage that didn’t help the situation either. In my view, therapists were just trying to plant ideas or undermine their patients. If someone says they were hurting, the therapist and docs would convince them that they weren’t. That it was all in their head. Or not as bad as they imagined.

Ugh. It’s all so dangerous. And that is why it took me so very long to arrive at a place of trust where therapy was concerned. Without trust, there will never be a healthy relationship. There will never be true progress and healing. And isn’t that the whole point?

I was crossing the street a few days ago when this all came up in my brain. My fears, my pain, the constant worry that they’d somehow hurt my standing with other doctors – that I’d somehow become “one of those patients” – it popped into my head. So I had to write about it.

My therapist is an an incredibly empathetic person who listened. It was always more like coffee with a friend than an office visit. This informal setting worked really well for me, others may prefer a more traditional style. Mental healthcare has come a VERY long way. It still has a way to go. But people being able to open up and admit that they need help is amazing. That they won’t be labeled negatively is how it should have been all along. But this is progress, so I’ll take it.

Saying – or in this case – writing all of this down was truly liberating. It feels like breaking out of old ideas & worries. Smashing an old idea window to smithereens and not looking back. Or rather, I can look back and know I’ve come through something hard and was made stronger for the experience. I advocate for myself in ways I never thought I’d have the courage to do.

I’ve come a very long way, emotionally and physically since then. My evolved opinion had to be reached by me, and me alone. No one could say it was okay, or going to be. No one could change the narrative of this chapter. No one but me. It’s an ongoing process, one that I will fiercely protect. I encourage each of you to find what works for YOU.

You know yourself, body and mind, better than anyone else ever can. Trust that knowledge. Trust yourself.

Peace and painlessness,

Beck❤️

#thisiswhatsicklookslike #rsd #crps #arachnoiditis #autoimmune #migraine #sacroiliacjoint #facetjoint #backpain #medicalmarijuana #carpaltunnelsyndrome #cubitaltunnelsyndrome #patientadvocacy #painintheBECK #phantosmia #dextroscoliosis #thoracickyphosis #lumbarlordosis #mentalhealth #therapy