And the music saved the night……..

Hello! I’ve finally finished packing for a little road trip. It took me a couple of hours to get myself organized and gather a few items that I always bring for the whole family. It’s post-it central around here, all of my lists to check off before we leave tomorrow morning.

Yesterday, the weather was nearly spring-like. Today, I woke up to REAL winter, all over again! It was shocking and aggravating to see the trees and sidewalks covered in dense, white snow. The good thing was that it all disappeared within hours. So weird. And slightly scary. Spring or global warming?? Both??

Anyway, I waited until it cleared to run my errands. After taking care of the most important jobs (bank, post office), I set about finding a book for my daughter.

I was walking along and found myself across the street from a small church. Suddenly, a powerful memory resurfaced. Back when I was studying for my associate’s degree in nursing at Beth Israel Medical Center, one of my classmates moved into our neighborhood. She and her husband had a young baby, he was about 7 months old. They found a great apartment, just across the from the church.

I still can’t remember how we made this plan, but I agreed to babysit for them. It was early in the summer term, about a month before my wedding. The weather was warm and all of their windows were open. At some point in the evening, the baby woke up. He went from minimally fussing to full-on wailing in a short amount of time.

I was years away from having my own mothering experience, but had spent the better part of my youth babysitting someone (siblings, neighbors’ kids). In an effort to soothe him, I kept the lights low and walked through the small apartment, with him snuggled up in a blanket.

Fifteen nearly-fruitless laps later, the most glorious sound filled the living room. Gospel music! The choir was practicing!

His eyes widened and his tears gradually stopped. Other than the music, the only sound was his occasional sniffle. I will never forget the look on his tiny face. It was shock, then calm. His eyes staring at my face, moving his mouth as though he’d suddenly start speaking or singing. It was precious. It was a sound he’d likely heard before.

Continuing a slow circle around the room, I watched his eyes droop. Even though he tried to fight it, he slept. It took a few attempts to be sure it would last. Rather than putting him back in his crib, I sat on a wooden rocker and continued listening to the exquisite voices floating through the open windows – praying they would continue. They did for another hour or so.

Walking past that church brought those memories flooding back. I lost touch with the family after we graduated. She got a job and I went on to get my BSN at New York University.

It’s extraordinary the way bits of the past find their way to the present, when we least expect them to. The baby would be in his twenties now! That fact makes me feel a bit old. LOL.

May happy moments catch you by surprise this week. 😊

Peace and painlessness,

Beck ❤️

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To feel or not to feel…. choices, choices everywhere……

Today I am feeling all of the emotions I’ve tried to ignore over the past few weeks. Months. Years, really.

The final performance was just wonderful. The kids – some of whom were sick or injured, all of them were exhausted – brought such energy and joy that it was contagious. Hopefully, their colds won’t be.😉

As we got everyone prepped, a few of the eight graders started getting emotional. When asked why, they said it was because this would be their final musical of middle school, that they’re sad to graduate in June. Then the tears began. Uh oh. These kids were painstakingly made up and in costume! I promptly shut all of the conversations down. “You’re not leaving yet,” I said, “Try to enjoy tonight and leave it all on the stage.” Plus, I explained that I’m a sympathetic crier. Once others start, I can’t help but join in. Commercials? Yup. Babies in tears? Absolutely. Stubbed toe? Why not? Anyone crying about pretty much anything (deaths, weddings, graduations, parking tickets)? Yes and yes. That made them laugh. They thought I might be joking. I’m not. 😭

This made me start to think about the changes happening in my own life. We’re all in an ever-present, ongoing cycle of changes. Young/old, life/death, single/married, sick/well, well/sick. It’s the same for all of us. For the chronically ill, it’s a teeter tottering of good day/bad day. Back and forth. We can’t always predict which way we’ll feel when we wake up in the morning.

I sometimes find myself focused on this cycle when a busy project is completed. When I’m working, there’s literally no time to be melancholy. When I’m on a deadline, I get angry, doubting myself or my process. Finding elation at an idea come to life on the dress form. During these sessions, I mostly blast Metallica (via earbuds) and find my way through. But there’s no time or extra energy to get introspective.

Now, it’s quiet. I’m looking around and only seeing time passing, decisions approaching. And they’re not all mine. Some belong to my daughter. With graduation nearing in June, she’s cycling through her own choices. All of these kids are.

It still astounds me that she’s as old as she is. I’ll give an example. Last weekend, my mom, two of my sisters, two of my nieces and my daughter (we have a large family) went to see “My Fair Lady.” This was planned for months. Had the school musical not been the night before, I might have gone with them.

Later that evening, my daughter and eldest niece went to another theater to see a poet. That had also been planned for months. When they asked if they could go, part of me wanted to say, “you’re not old enough.” And then I woke up from seeing them as kids and realized they’re nearly adults. It felt like a slap. Maybe I needed one. (But not really). 🤔

This is March. The end of it, I should say. I’m finishing my certificate this May. With the break in semesters, I almost forgot! Almost. After spring break, I’ll start prepping for the dance program’s spring showcase. That will keep me busy. Maybe even keep my inner monologue to a minimum. Who am I kidding? It’ll be louder than ever.

May the pendulum swing towards good days, low pain and calm.

Peace and painlessness,

Beck❤️

Halfway through…. fighting for the rush…..

Saturday:

Well, this is a first for me. This afternoon, my husband was finally able to wake me – after multiple attempts – so I could take my meds. My morning meds. This victory came at 2 p.m. I’d fallen asleep at around 1:30 a.m.

Last night was our evening show. It was amazing. The kids were so great. Backstage was a little chaotic, their nervous energy kept them chatting loudly despite my pleas for low voices. But they were great. I’m so proud of all of them.

Preparing for all of this involved 3.5-4 hour practices every school day for weeks. The first of two daytime shows took place on Wednesday. Thursday brought more practice and then our first evening performance was on Friday night. Each afternoon, I was on my feet for at least five straight hours at a time, otherwise running around for hours more. This might seem insignificant, but it’s not. Not when you have RSD.

When I was working as a full time RN, that would have seemed like an easy shift. But that was nearly two decades ago and I was a lot healthier. Now? I’ll absolutely pay for it in fatigue and pain. My body feels a little like a crash test dummy. My legs are swollen. I’ve had them elevated since Friday night. And my back hasn’t been this consistently bad in years. My hands and wrists? Well, you already know.

So why do it? It’s the joy. The feeling that comes from making something useful and creative that benefits others. Something that people enjoy. There’s simply nothing like it.

It’s funny. When I was working with mothers and their newborn babies, I believed that nothing could give me the same rush. Caring for women at the most powerful and vulnerable time of their lives? It was extraordinary. But it was also not the last time I’d find professional happiness, even though I believed it would be. I get that rush now. But it comes with a price. The cost of being chronically ill.

I had to see my pain doc last week to renew my meds and talk about my back once again. He also renewed his advice that I should try sacroiliac steroid injections. They would be administered in the clinic, (not the hospital this time), under fluoroscopy. “It’s a quick procedure.” They even had the paperwork on hand, the schedule could be set right then. But I said no. For starters, he said it could be done as soon as this coming week, which isn’t possible. We’re only halfway through our shows. Anyway, I told him that I had to think about it.

For me to go as far as checking how soon it could be scheduled?? Unheard of. I swore I wouldn’t have any procedure ever again. Especially on my back! But the locking bone sensation and nerve pain is out of control right now. It usually comes and goes once in a while. Lately? It comes and stays for hours at a time. My walk starts to look a bit like Quasimodo’s. It’s difficult to stand up straight. The costume kids are acutely aware of it, though I wish they weren’t. But they snap into action and carry clothes through the long hallway that connects the two main corridors, (where matching costume racks currently reside), mostly so I don’t have to. I’m lucky to have such great help.

Sunday:

I spent the rest of the weekend resting but mostly sleepless. Good thing I had that twelve hour nap on Friday night. 🤦🏻‍♀️

Monday:

Today I have a break, which is lovely. Tomorrow, we resume our regular schedule. On Wednesday, the kids report for costumes and makeup at 10:45 for their 12:30 show. Thursday, we have a final dress rehearsal. And Friday’s call time is 4, with the curtains up at 6. It’ll be a long week. At some point, everything needs to be re-checked for wear and tear, steamed and freshened up.

Why do this? I have a great answer, a true story. Last Friday, minutes before the curtain went up, one of my leads approached me, tears in her eyes. Slightly frantic to decipher what the heck happened in the mere moments since I handed off her costume, I asked her why she was upset. Her response? A hug. Then she said, “You fixed my pants better than when they were new! And my belt! I didn’t know they could be fixed better than when I first got them. Thank you, Ms. Becky!” The pants had a broken drawstring and her belt loop had been torn. Simple fixes, both. Calming her down as quickly as possible, I gently answered, “That’s my job! It’s what I do.”

It’s my job. It’s what I do. Gladly. ❤️

Peace and painlessness,

Beck

Praising the good ones…..and on we go…

The injections are DONE. Thank goodness. It was an experience I’d rather not repeat any time soon. Unfortunately, I’ll probably have to start the process over again for my right leg at some point…. not now.

When the snow storm hit last week, my appointment was canceled and then rescheduled for the following day. I worried that the doc would be available to give me the shot, which was the last thing I wanted. Rob was supposed to administer it, but I’d have to take my chances at the new appointment.

Arriving with minutes to spare – (thanks again NYC MTA…. NOT) – no one was at the desk. Well, the nurse was sitting there but couldn’t (wouldn’t?) punch in my name and give me the stylish hospital wristband per usual routine. I waited. She watched me. I watched her. My appointment was scheduled for 9:00. It was 9:05, then 9:10. Finally, she asked which person I was scheduled to see. I explained that my shot was booked for 9:00.

Another nurse appeared, (one I hadn’t met before), and brought me to the exam room where this saga began, back in early September. That day seems so long ago, considering the drama that’s ensued in the months since.

After a few more minutes, the nurse returned with Rob. Phew! As I expected, he explained everything. Then calmly administered the last gel injection. And then he stayed to answer my questions.

Using ultrasound, they were able to see increased inflammation in my left knee. That explained the increased pain I’ve been having. Apparently, they don’t usually expect to see any results until 6-8 weeks after the first shot was given. So I still have time.

He explained that conditions inside my knee are pretty bad. So if anything, the shots will hopefully take the edge off of the pain I have. But, ultimately, there are no guarantees. This just buys me presurgical time. I knew that. Now I wait to see if this gel can magically cushion my jammed up knee. Let’s keep a good thought for that. Especially since the pain and pressure has increased over the past few weeks. Come on gel! Do your job.

Anyway, as I talked to the two of them, I mentioned how bad last week was. How the doc rushed in and raced through the procedure. Oddly enough, neither of them looked surprised. That was unsettling, to say the least. I said as much. While I had their attention, I explained how the doc broke multiple rules of mediquette. They completely agreed with me. Vindication is MINE. LOL.

But that’s when I was reminded of something. Too often, we speak of the medical professionals that screw up, that make glaring errors in how they treat people. And, trust me, people with RSD can tell you horror stories about being mistreated by people tasked with caring for us. We hear about the good ones too, just not as often.

Anyway, I wanted to thank Rob for taking time to answer questions and explain what I should expect to see. And thank him for being kind. Compassion costs nothing but means so much to people in pain. It means a lot to most people.

After the shot, they had me wait a couple of minutes before getting up. While we sat, I told them how I’d been dealing with medical folks for 20 years, (between the lupus and the RSD), that I’ve seen both ends of the kindness spectrum. When you’re at the mercy of others, when your very life depends on what those others say and do, you feel helpless. And that’s lousy when those others are nasty and unprofessional. I thanked him for his help and for his kindness. After I was done speaking, he shook my hand and said, “Thank you. I really needed to hear that. Sometimes it really helps to hear that.” And that was that.

So, let’s praise the good ones. Clearly, they don’t hear it enough.

Peace and painlessness,

Beck❤️

That’s Life! And the rules of mediquette…….

[As I wrote this last week, I was crying. I was raging angry. I was a million emotions at the time, none of them helpful. But that’s where I was. I’ve since toned it down a bit because retrospect brings me calm. And now, back to our regularly scheduled blog].

Does everyone know Frank Sinatra’s version of “That’s Life!” I know it well because I grew up in a Sinatra-loving family – one that spent Sunday evenings singing and dancing around the living room to great music. This was a song we’d all join in on, as my sister Chrissy sang lead.

Walking away from the hospital, the lyrics are blaring in my head. “I’ve been up and down and over and out, and I know one thing. Each time I find myself flat on my face, I pick myself up and get back in the race! That’s life!”

That’s life. How many times do we have to be up and down and over and out with doctors? Or any medical professional for that matter? How many times must patients pick themselves up from the floor? What happened to me just now hasn’t happened in more than a decade. I’m SO angry. But I’m also hurt. That’s why I’m crying. I have to calm down though, because people are staring at me. That’s the last thing I want. And now I have to go to school, to rehearsal. I’m meeting my costume team, three students who are so much fun to work with. They’re relying on me, so I can’t miss any rehearsals between now and March 14. Ugh. Stop crying, Becky. Just stop.

I arrived at the orthopedic office to get the second of three gel injections. There was a long wait, the nurse kept announcing that they were “just waiting for a free exam room.” Whatever. I didn’t care. It’s not like I’d have left before the shot. Maybe I should have.

Finally! I got a room but they were in a massive rush. “Change quickly and the doctor will be right in.” Change quickly? That should have been my first clue.

The nurse set the sonogram machine next to the exam bed as the doc walked in. “How are you?” He asked me that as he was talking to the nurse, only half listening to me say how sore my knee had been over the past 48 hours. He didn’t even sit down, he just started the procedure very quickly.

As he steadied my kneecap, he asked the nurse for the syringe. “Wait,” I said, “you’re going to use the freezing spray, right?” He answered, “of course! I’m not a brute. Not all the time anyway.” And laughed.

That was when he should have spent at least a few more seconds finding the correct spot on the sonogram. Instead he announced, “Little stick,” and injected the gel into my knee. Not expecting it to happen as fast as it did, I jumped. The freezing spray had barely touched my skin before he started the shot. And that was when things really went off the rails.

He scolded me – loudly and in an irritated voice – saying, “you’re making this a hundred times harder for yourself by flinching. Relax your leg.” For the record, I would have relaxed my leg if I’d had more than two seconds to be ready for the injection. Just saying.

The only thing I could come up with in that moment was the sentence, “You don’t know what this feels like.” And his answer? “Yes I do. I’ve given thousands of these shots.” Wait…. what?!? Yes, you read that right.

“Yes I do. I’ve given thousands of these shots.” My brain was on overload but I managed to cry out, “You don’t have RSD.” He didn’t have a smartass answer for that. But then I said, “Rob didn’t rush the last time. He prepared me better for it.” And the doc, looking like, “Whatever,” responded – (brace yourselves) – “I’m sorry for your troubles.” And then LEFT. He just walked out. ?!?!?!?!?!?!

WHAT the?!?! My troubles currently consist of pain that’s way worse since you jabbed my knee with a giant syringe and a jackass orthopedic doctor who just committed one of the worst mediquette crimes.

[Mediquette: medical etiquette. I wish I came up with it, but alas I did not].

By saying he knew how it felt, he invalidated everything about my experience. MY experience, not his. I don’t care if he’s given thousands of shots. I don’t care if he’s received thousands of shots. That’s irrelevant! No one has the right to tell another person “I know exactly how you feel.” Guess what? No, you don’t.

Twenty people with migraines can be sitting in the same room, all with similar symptoms. But one person’s experience is NOT like another’s. And to believe it is, is misguided.

I share a rare disease with millions of people. I’m even an admin for a support group. But I would never tell ANY of those people that I know exactly what they’re feeling. How could I?!? One person’s pain scale number 10 is another person’s number 4. My nagging burn pain might be another patient’s dull ache. And on and on.

But when doctors say things like that to a clearly upset patient? Wow. Delusional doesn’t quite cover it. Giving injections isn’t receiving injections. As a nurse, we learned to be empathetic without inserting ourselves into the narrative. Maybe other medical professionals don’t take classes that include those vital teachings. And, admittedly, I haven’t been to nursing school in a looooooooong time. I hope most newer nurses are still learning that. Some of them clearly aren’t. The nurse with me just said, “hey, at least it’s over! And it will help you.” Perhaps she has a crystal ball.

For now, I’m limping into a subway car. I’d planned to get a cab, but habit brought me to the stop I’ve used for fifteen years. I’m clearly on autopilot at the moment. I realized as I sat down. My mom won’t be happy about this. 🤦🏻‍♀️ 😬

For now, I have to calm down. I’m looking at the posters in the car. Counting stops. Trying to steady my breathing. Trying to stop the tears. This crying is different. I’ve angry cried. I’ve sad cried. I’ve commercial “that’s so nice!” cried. This is hurt. It’s like being wounded by someone who knows exactly what will do the most damage. The first time I met this doctor, I was blown away by his humor and understanding of my situation. Even my mom was surprised. But today, he blew it. His backed up schedule was not my problem. His need to rush became my problem, and that’s just wrong.

Before I left the office, the receptionist informed me that the doctor won’t be in on the day that my last injection is scheduled. I immediately said, “You’ve got to be kidding me. It’s been booked for weeks.” (Don’t get me wrong, I didn’t want him giving the shot but I thought they were rescheduling me, AGAIN.) But she said, “Maybe Rob can do it. Would you be ok with that?” Without hesitation I said, “100% ok.” And then I left. They’ll be lucky if I go back at all.

Thursday:

I’m still limping. Part of me is nervous that something’s gone awry. But I know if I call them, he’ll blame me for flinching. So I say nothing. I limp around the apartment and the school, elevating my leg whenever possible. I cannot wait for this to be over.

And next week, it will be.

Be kind to one another. ❤️

Peace and painlessness,

Beck❤️

(Note: my limping subsided by Saturday. The pain remains.).

“That’s Life” copyright 1963 Dean Kay and Kelly Gordon

And the (extra) beat goes on……

[I’m going to preface all of this by saying that my heart is ok. It’s not a medication issue, or a problem with the patent foramen ovale. Now back to our regularly scheduled blog].

Wednesday morning:

Today started with the usual complete chaos that comes with being me. I woke up at 5:30, getting ready for the echocardiogram and appointment with the cardiologist.

My husband and I left while our daughter slept. This is a vacation week for both of them. It’s tough because I’m losing valuable sewing time, but this is kind of important. LOL.

My memory is all over the place lately. It worries me that I can’t remember things unless I’ve written them down. When the test was booked, I must have written the details on our kitchen calendar. And of course I never transferred the details into my phone. Or on one of my fifty post-it notes, (the ones stuck to my wallet/purse/paperwork/all over the apartment). So we were a bit lost. (That’s putting it mildly).

After being bounced between the first and fourth floors – twice! – we were directed to an entirely different building. That’s when I remembered where the echocardiogram office was. Not only had we gone to the wrong place, I was now late. It wouldn’t have been as bad if I’d been on my own. But the fact that my husband surprised me & got up at the crack of dawn to come with me? Ugh. I felt awful.

A lovely technician named Donna did the test. The fluttering was happening as she monitored my heart. When I asked her if it was being picked up, she said, “Oh yeah, you’ve got extra beats happening. I’ve got them.” Well, at least it validated my experience.

A little while later, we sat in the waiting room of the my new cardiologist. He arrived and seemed calm and unconcerned by my test results, which was a good thing. He explained that my heart – like the hearts of 80-90% of the population! – is experiencing extra beats. It’s not related to my meds (phew!) or the tiny hole in my heart (double phew!). There’s no clot, tear or any other anomaly. They honestly don’t know why my dramatic, extra beats have started. Most of the time, they don’t ever find out why it happens. The issue often corrects itself and goes away. Complete weirdness.

The fact that it makes me lightheaded and my legs feel like lead didn’t rattle him either. He explained that when these extra beats occur, there’s usually a pause and the beat that follows generally arrives as a THUD, which is scary. Sometimes that pause and big beat make the body feel like something major has occurred. It’s just the heart sort of resetting itself. Sometimes it causes dizziness. Occasionally, the delay causes the body to feel weak. But it’s not life threatening. He almost ordered a halter monitor – 🤦🏻‍♀️ – but said my results reassured him that it wouldn’t be necessary. And the fact that I’ve got a bunch of costumes to finish is hard enough. A halter monitor would complicate that by a LOT. So thank you doc.

Then he asked what kind of work I do, what stressors I have in my life. (How much time do you have?!? LOL) I mentioned my costume work. He asked why so many Australians win awards for costumes (he’s Australian). I answered that they’re obviously good at what they do. He just sort of looked at me and said, “I guess they got the costume genes and I’ve got the bad dresser genes.” That’s when I noticed little things about his appearance that cracked me up. My husband later said that he noticed them too. It was a strange little interlude between medical speak. He also yawned a few times. There’s a cartoon character that he reminded of, from a show my daughter watched when she was really little……. I just can’t remember who it is. Ugh! My memory is crap! It’ll come to me at a strange moment.

So that’s where we are. Loads of fabric to turn into magical costumes and freakish extra beats that scare the heck out of me but aren’t life threatening. Thankfully. The doc said if it was still as bad in three months, we could talk about meds that suppress the extra beats. No thanks. I’m not adding another medication to the mix. Nope. I’ll live with the vacuum-being-hooked-to-my-back-and-sucking-the-air-out-of-my-lungs-sensation. Now that I know what it isn’t, I can live with what it is.

Wishing you days without weird extra things that scare you. May your days be calm. May your pain be low. And on that note, I’m off to sew. (I HAD to do it 😉).

Be kind to one another. ❤️

Peace and painlessness,

Beck❤️

One down, two to go……

Wednesday morning:

After receiving three calls from the orthopedic doctor over the past seven days, (all automated, reminding me about today’s appt. I was certain they were calling to cancel or relay some massive problem), I’m currently on my way for injection #1. This has been an exhausting process and I haven’t even had one of them yet.

My palpitations are OUT OF CONTROL today. I feel like my heart is bounding out of my chest. I’m wearing a fitness monitor (steps, miles, ridiculous heart rate). It’s gone from 80’s into the low 100’s, back to 70-something. Back up and then down again. And the fact that I’m so focused on it isn’t helping. Seriously. 😞

To make things even more fun, I’m on the subway, in a car surrounded by coughing, sniffling people. Ugh. Noooooooooo! And the conductor actually just said that our train was “being held because of delays on the train behind us.” What is happening?!?! That doesn’t even make sense. Welcome to a day in the life of a subway-riding New Yorker.

Just get me there already. Please!

Ok, I’ve finally arrived. After being set up in a treatment room, I begin waiting. And waiting. It probably wasn’t very long, but it felt like an eternity. Finally, a knock at the door. But it’s not my doctor. It’s a staff member. She told me that the doc had been called over to the main hospital for an emergency case. Would I mind if the physician’s assistant did the procedure? At first, I agreed. But as I waited for the PA, I started to panic-text my mom and sisters via our ongoing daily chain. Was I making a mistake? Should I wait? They convinced me to stay. If I trusted the PA, I should let him do it.

Turns out, it was the really nice guy who’d first interviewed me when I came to the office in September. The one who’d said that at least I was a nice person. LOL. He was very kind and explained everything he had to do for the gel injection. After being in the room for a minute, he said, “You look really anxious, so let’s get it over with. You just have to keep breathing.” Apparently both he and the nurse were under the impression that I wasn’t. I was made aware of that when she kept saying, “Breathe, my dear.” I thought I was. 🤷🏻‍♀️

The set up:

The sonogram machine:

The gel-filled syringe: 😬

After they’d cleaned the knee, set up the sonogram and used freezing spray that’s supposed to keep you from feeling the worst of the injection (I call BS on that, it doesn’t), Rob (the PA) did the procedure quickly and sat with me for a moment afterward. And – only because I asked – we talked about worst case scenarios, as in what if someone reacted badly to the gel? What do they do? The answer wasn’t pleasant, but it was logical. After that, they told me to wait a few more minutes before I got up, which I did. When I went to the office to retrieve my insurance card, I started to feel the skin on my left knee itch. A lot. Before leaving the office, I asked the receptionist to call Rob and ask if that was normal. Suddenly, there he was. After he reassured me about it, I left.

What I remember after that is spotty, mainly because the adrenaline that delivered me to the office had run out. I felt like lead. My exhaustion was so intense, all I wanted to do was lie down. I remember knowing that I wanted to take a shower. Before arriving at the hospital and after I left, it seemed like I’d been sneezed on/at/around, since I’d left my apartment. No amount of tiredness could stop my serious aversion to germs. 💁🏻‍♀️ Hey, at least I admit my complete overreaction to them. But aren’t people glad when I’m carrying a bulk pack of Wet Ones. LOL.

I got home. And then nothing…… I must have fallen asleep. The next thing I knew, my daughter was home from school and it was late. Thank goodness we had leftovers! That baked ziti was delicious the night before. It tasted even better last night since I only had to reheat it. ☺️

Although I didn’t go to sleep right away, I couldn’t even watch the pairs figure skating finals. I had to lie down. We’d all already exchanged our valentines and my daughter had gone back to her work. So I allowed myself to rest.

Thursday morning:

Sporadic sleeping……. woke up at 2:45…… back to sleep at 4:30….. up at 6:05 to get the day started.

My knee isn’t as swollen. Although the site burns to the touch, the stiffness and overall soreness has gone down a lot. So that’s that.

Friday evening:

We went into Manhattan and, even though I’ve mostly rested over the past couple of days, my knee is sore. And it’s weird. The pain is on the inner aspect, under the kneecap. And the injection site (on the outside of my leg) is uncomfortable. The swelling is up a bit. I’m watching it closely. Maybe it’s because I haven’t done a lot of walking? Hmm.

Saturday:

Back to work! I’ve immersed myself in the show again. This time, I set up my table. No more laying everything out on the floor. In my defense, it was easier to use my extra-large cutting board on the floor. Laying out yards and yards of fabric on a flat surface. But sitting on the floor now would just be stupid. So I won’t.

So that’s that. We pick up where we leave off, just like always. This week, I had someone say how surprised they are at how normal I look, with pain and health issues happening underneath. It’s something that I’ve heard dozens of times over the years. Anyone with a so-called “invisible illness” will attest to that. “You look so healthy!” “You look so normal!” Whatever normal is. Yeah, I guess I do.

This was round one. Two more to go. 🤦🏻‍♀️ At least I know what to expect.

Wishing each of you a calm week. ❤️

Peace and painlessness,

Beck❤️