Last weekend, a heard a great sermon. In it, the minister said that when someone is crying or sad, our usual response is to try and find out what’s wrong. But when we see people smiling and laughing, we don’t ask why. We don’t ask what’s brought them so much joy.

It reminded me of that time on the subway, I was reading Jenny Lawson’s, “Furiously Happy.” I started laughing so hard and I couldn’t stop. Soon, the tears were rolling down my face. The harder I tried to calm down, the harder I laughed. I’d get myself under control for a few seconds and then bust out laughing again. It was ridiculous.

After a few minutes of this, the men on either side of me started laughing too. Then the woman across the way cracked up. Soon two others were laughing also. It became so out of control, especially since they didn’t even know what they were laughing at!

But, as I exited the subway car, the woman across from me said, “thank you for that.” It was such a silly, positive situation. One that left at least 7 people feeling lighter.

Have you ever heard someone laughing and immediately joined in, purely as a reflex? Or at least smiled? It’s hard to resist, especially hearing the laughter of children. Or babies!

But it’s true – we don’t ask people why they’re happy. We just move on. In my case, I feel an immediate endorphin release, the obvious happiness of others is enough to give me happiness as well. It’s a good feeling.
It’s an especially good feeling in the wake of so much drama. So much pain. The world we live in is not always a happy place. So I’ll take any joy over none at all.

My teeth and back are bad this week. But I’m trying to focus on any nuggets of good, any snippets of laughter, and fun. And I definitely want to know what brings you joy.

Here’s to good moments. Here’s to laughter. Here’s to sharing what’s joyful in our lives.

Wishing each of you a joy-filled, calm, and safe week.

Peace and painlessness,

Beck ❤️

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

It’s obvious to me now, but the fact that the nerves in my mouth are just as much trouble as those in the rest of my body shouldn’t have surprised me. I guess it did.

Allow me to go back to last Thursday. I started having an arachnoiditis flare. Late that night, I was standing in front of my rocking chair. When reaching to turn off the standing lamp behind the chair, I had what I can only describe as a starburst of numb pain from the center of my lower back. I froze, trying to decide what I should do. It was definitely a “no sudden movements” moment.

Standing up slowly, I shut off the light and carefully made my way to our bedroom. Mostly out of fear, I told my husband what had happened. I have a thing about these types of moments. If I’m worried something bigger is happening – or could happen – I tell him. Most things I keep in my own head. Why worry anyone else? Plus, since this is all a 24 hour a day situation, I’d be reporting kind of nonstop. 😂

Seriously though, I would be. So I don’t.

But in this case, we talked. After a rough night of little sleep, I woke up with a pain I can only describe as a “punched in the back of the head” feeling in the lower right side of the back of my head. A bruised sensation that truly felt like the result of some sort of impact, even though there hadn’t been. It hurt now matter how I moved. The site was tender to the touch, the right side of my neck was too. I absolutely told my husband about this one because it frightened me. Was it muscular? (Most likely). Could it be some kind of a bleed? (Probably not). But it freaked me out. That lasted several days. And I admit to icing it (with care, padding, and over limited times) because the numbness took the edge off of the pain. For a few minutes, anyway.

By Monday, I’d woken up with neuropathy on the right side of my face, scalp, and neck. It was as if someone had literally drawn a line down the center of my head. Left side, (for once!), was okay. Right side, not so much. It hurt to touch my skin, to close my right eye, to touch my scalp. Same with my neck. And, later in the day, I felt the pain going down the right side of my body. So weird and unexpected. If I’m honest, it was a bit of a freak out.

And – just to add more ridiculousness to this whole odyssey – days earlier, I’d called my dentist to ask for an emergency appointment. I was convinced that my left-sided fillings were loose. For the past year or so, I haven’t been able to chew on that side without discomfort. Now, I only chew on the right side. That side is an issue now too. And my front bottom teeth are in on the action also. I can’t bite down without getting a nails-on-a-chalkboard wave of nerve pain that rises up from my gums, through the teeth, and then recedes. Ick. It’s awful. They scheduled me in for Tuesday.

When I arrived, I explained about the pain in my teeth and the new neuropathy. After an exam, x-rays, another exam, and a consultation, my dentist said there’s NOTHING wrong with my fillings. He checked my mouth carefully and said the following: 1) my mouth is “incredibly dry,” 2) my gums are receding (we knew this), 3) I have bone loss in my lower jaw (we also knew this, but he wants to try to make sure this doesn’t get worse), 4) he thinks my “toothaches” are actually stemming from the nerves in my mouth. Aka, from the CRPS. He truly believes this is the root of the problem.

And, once again, CRPS screws up my life. Ugh!!!

All of this happened one day after another. This was a good example of a bad week. There’s pain every day, I’m used to it. But this was more. New. Scary. I don’t scare easily, when it comes to the pain in my body. I think I’ve been in this situation too long. But new pain, the overwhelming kind that nearly takes my breath away? It’s not good. And it does frighten me. I’d be lying to say otherwise. New pains mean new complications. Possibly a new diagnosis. And trust me when I say that I don’t want any more of those. I’ve got plenty, thanks.

I have no idea what my arachnoiditis will do in the future. My back pain is always there. But when the arachnoiditis kicks off more, it’s like someone pulling your nerves taut and then strumming them. Ick. Yikes. That was a disgusting description. I apologize. 😬 But, unfortunately, it’s accurate.

I have many good days. Many good weeks. Stretches of time that are without increased drama. Those seven days were rough. It wasn’t the best week I’ve ever had. And it was definitely not the worst. And since I’ve got no idea what’s next, I’ll just keep taking care of myself and be as ready as I can to deal with what comes.

Here’s to better days. And on that note, I’ll be off to try and have one. 🙂

Peace and painlessness,

Beck❤️

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

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

Earlier in the week, an important post came up in my Facebook memories. Written by Susan Hallock Smith and posted in 2017, the author details what life with RSD/CRPS is like. What it is. What it can be. Each of our stories is different, yet not.

The first time I read it, I mentally detached myself from the content. “It’s not my story” morphed into “it’s like my story” to “it is my story.” That made me sad and angry. I can separate myself from it all I want. But, at the end of the day, we’re traveling the same road.

Now I repost it and hope that everyone who sees it actually takes a few minutes to read it and understand what RSD is like. Although it varies from patient to patient, there are similarities. As promised in yesterday’s video, I’m including the post down below.
My RSD journey began in 2003. It’s hard to believe that it’s been 18 years! So much has changed since then, some good and some bad.

I find myself trying to remember it all, just not very often. It’s easier to face forward, especially since I can’t change anything. What started with a heel spur in my left foot has become an all-over event. That’s part of the change. The rest of it has to do with new complications, new diagnoses, changed meds, doctors, etc.

My mobility improved tremendously, thank goodness. I was able to stop using the cane I’d used for years. My weight slowly came down. Carrying an extra 50+ pounds on my 5’3” frame did nothing good. Having the morphine pump for just under 7 years was very helpful, even after it was removed. And I don’t care what anyone says – I feel like it helped my body’s pain responders calm a little bit. A little bit of relief can be the difference between “I can’t move today” and “I can do what I have to do.”

I’ve learned to not be surprised by anything in my medical life. Getting diagnosed with arachnoiditis certainly helped. (Come on – the name still makes people question the veracity of such a freaky diagnosis). So having new things exacerbate old things, having complications during procedures, suddenly reacting strangely to meds I’ve taken without incident for years – all of it – I’ve learned to roll with it. Yes, I get upset and lost for a bit. But then I remember that I’ve got zero control over any of of this. Well, that’s not entirely true. I have control over the meds I take, the procedures I agree to, the ones I don’t. I can control myself and my reactions to things. That’s about it. It’s laughable to imagine otherwise. I accept that because I’ve got no choice.

18 years. So much has happened since the fall of 2003. The biggest since then is that I trust myself more. I ask lots of questions. I I trust my judgement. I’m willing to refuse meds/treatments I’m not comfortable with. I don’t just give over control to whatever doc I’m seeing at the time. No way. I know myself. I know what my body is going through.

What I went through yesterday is par for the course. I woke up, planning to shower and wash my hair. It’s a lot longer since it was last cut in February of 2020. It takes much longer to wash. Plus, the stinging sensation on my back hurts more when water hits it. With that in mind, I knew I just didn’t have the bandwidth to deal with it. So, I just got up and had breakfast. Then, I sat down and rested. I’ve been so fatigued, my skin hurts (on my back and arms), my right arm carpal tunnel has been really bad. I did what I could do.

At around 3:30 p.m., I decided that I had enough energy to take a shower. Whenever I do this that late in the day, it makes me feel lazy and kind of sad. I don’t know why. I do know that I’m not lazy. Then I remember that no one in the world is harder on me than me. This cycle of berating ourselves is part of a lot of people’s lives, I know that. But when it comes to people living with chronic illnesses, chronic fatigue, and pain? Yikes. We are brutal to ourselves. It’s not a good thing. But overcoming that cycle is easier said than done. This is part of my RSD, my chronic illnesses, my medical life.

Today has been a bit better. My back is giving me grief, but what else is new? This is today. Today, my RSD is front and center. Tomorrow? Who can say? But whatever I’ll be going through tomorrow, I’ll do my best. That’s all we can do.

Wishing each of you a calm, happy weekend.

Peace and painlessness,

Beck ❤️

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

A few things happened yesterday.

I called my neurologist -the doctor who treats me for my migraines as well as certifies my medical marijuana card status- knowing that I’d need to see him soon to keep that certification current. I knew it would be a wait, it always is. My card expires in early November. But when the secretary looked at his schedule, she said the earliest I could get in would be December. When I explained the situation, she suggested that I message the office. Within minutes of hitting “send” on the note, my phone was ringing. It was his office, asking if I could do an appointment at noon. It was 11:40! Of course I agreed, gratefully.

The zoom call was set. My doctor showed up and we chatted about the card and about my migraines. He explained my headache options and let me know he’d submit the paperwork for my new card. It was a whirlwind success. Unexpected, for sure. But it was nice to have it work out that way, since nothing is ever that simple.

But since I had to get ready for my pain management appointment, I had to shift gears quickly. I arrived for my 4 p.m. slot. After the nurse brought me to a room, I noticed that something was happening with another patient. All of a sudden, a woman came into my exam room and introduced herself as one of the fellows. These are the docs who are training for a specialty.

She was very nice. We spent the appointment talking about how the August injections on my back were about 60% successful, which is incredible. I only really started feeling that they’d totally worn off when I got into bed on either Sunday or Monday night. My back has been hurting reeeeeally badly at night over the last week. To the point where I barely sleep. Between that and my right foot, it’s amazing that I sleep at all.

Anyway, she was awesome. My doctor popped in at the end and made sure all was well with me. It was only after I’d left that I realized that the fellow sounded like one of those meditative apps, soothing and steady. She should also consider working on audiobooks. It made me laugh, how dreamlike the whole thing had been. Especially considering what we were talking about. We discussed getting a spinal cord stimulator (nope), injections in my neck (absolutely not), and radiofrequency ablation (we know where I stand on that). She understood, saying it was good for me to have all of the info to “keep in (my)pocket for later.” It was a graphic, kind of scary talk. But, oddly enough, her tone and manner kept me calm through one of the best, descriptive medical conversations I’ve ever had in these 20 years!

I traveled back through rush hour and just needed to rest when I got home. I rewrote the entire blog this morning because I felt like I needed to. But I’m glad I held off on publishing until today, even though it upsets me to post later than normal. I needed to rest. Even now, I’ve got a migraine. After this is posted, I’m going to take it easy.

The fellow gave me lots to think about. The spinal cord stimulator is a true last resort option. It’s not something I’d consider right now. The neck injections are also a back burner scenario. For the moment, anyway.

Here’s to having options. Wishing each of you a safe, peaceful week ahead.

Peace and painlessness,

Beck ❤️

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

All is well, I just didn’t have the energy to finish my edits tonight. Pain is up a bit, but that’s to be expected after a trip to the city.

See you tomorrow!

Peace and painlessness,

Beck❤️

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

Every now and then, we get the urge to de-clutter. It’s a universal thing, for sure. In our family, it begins with a discussion – “it would be great if we could (fill in the intended project)”. Then there’s more talking, getting everyone warmed up to the idea. Then we tentatively say when we’d like to do it. Then that day comes and we may or may not have accomplished our goal. More often than not, it’s been my husband who’s accomplished what he hoped to do. And, once again, I’ve more than likely accomplished next to nothing. Not always, but most of the time.

I’ve lived the majority of my medical life in this apartment. We’ve been here for the past 24 years, moving in just two years into our marriage. It’s a place that we absolutely love. It’s also the place where we’ve accumulated quite a bit of stuff.

Over the years, as we’ve sorted items for donation or disposal, we’ve come across wonderful things. Happy memories triggered by true treasures. One of them is “The Wind In The Willows,” by Kenneth Grahame. It’s one of my childhood favorites and my husband rediscovered it the other night.

Seeing that book brought me back to my youth and to the times I read it to our gal. As much as I’d like to pass it along, I’m still debating. That’s an all too frequent issue for me. I try to Marie Kondo everything: keeping only the things that spark joy. It’s easier said than done though. Many things spark joy!

Another issue I have that I’m sure you can relate to is trying to undertake these projects while living with all of my medical crap. There are stretches of time when I feel good, really energized to get stuff done. But more often than not, I just don’t have it in me. Sometimes, admittedly, it’s pure laziness. When the thought of starting some big thing is about as appealing as dental work. But there are days when I wish I didn’t have a migraine. When my back or arm or knees would just cooperate. Trying to sync the good days with my husband’s free time isn’t always doable.

A few weeks back, when I was slammed by the migraine from hell and a uti, I waited a couple of days and then started a few household tasks that I desperately wanted to get done. Was it easy? Noooo. Did I hurt later on? Yes! But was it worth it? Absolutely. Just to feel like I’ve done something – anything – to help our family.

How do you get things done? How do you motivate yourselves? Everyone faces these moments, what helps you the most? I’m also very curious about my readers who are living with chronic illnesses: how do you cope with these tasks? What helps you?

I’ve created a checklist for myself that’s hanging in the kitchen. So far, only one thing is checked off. I actually forgot about it until I needed to check the calendar. There was my list, mocking me. I’ll get it done. When? Who knows. But I’ll get there.

Here’s to motivation! Here’s to getting stuff done! Here’s to wishful thinking. 😉

Peace and painlessness,

Beck ❤️

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

The migraine hit me on Tuesday night. I knew it was coming, I just hoped it wouldn’t be too bad. By Wednesday morning, after a sleepless night, that ship had sailed. All I could do was wait it out.

What does your migraine feel like? Mine is a mixed bag. I could be wrong, but I strongly believe that these headaches trigger a CRPS flare. The migraine pain is consistently centered over my left eye, radiating through my head and across my face. But then the burn starts. It’s like having a sunburn under my scalp, along the hairline.

On top of that, my body feels weighed down by invisible sandbags, as though I’m being squashed by an imaginary car-crusher. It’s exhausting. Sometimes, I just have to close my eyes and sit as still as possible.
What does your migraine feel like?
As I muddled through Wednesday and then coped with the migraine hangover on Thursday, I was reminded of something. Although it was a bad day – a bad couple of days – and it’s tempting to proclaim it the worst possible day…. It really wasn’t.

A friend posted a poem written by Chanie Gorkin entitled, “Worst Day Ever?” And it helped me get over my feelings on the day. I’m including it below.

As hard as my bad days can truly be, as heavy as my rock backpacks become, I am surprised to find tiny flickers of light and goodness among the gray. Small snapshots of beauty and joy. Things that help me cope in ways I never expect.

Perfect example: Tuesday was laundry day. My daughter and I were between wash/dry cycles and we took our usual stroll. Most of the summer flowers that we’ve enjoyed seeing are long gone, replaced instead by lush green plants and trees preparing for fall. But as we passed one building that has an extensive garden out front, I happened to spot two perfect flowers. They were the only ones left on that plant. I wish now that I had taken a picture, but wanted to stay in the moment. Deep fuchsia and bright orangey-red. They sort of resembled Gerber daisies, though I’m fairly certain they weren’t. But, in that pained moment, they helped me tremendously. My brain stopped focusing on my tiredness, on the coming headache. Even now, days later, I’m smiling.

All of us battle these bad days. Whether it’s work related, family issues, health or lack of….. it helps to find an anchor. Something to help you breathe through the next moments, days, weeks, and beyond. Something that reminds you that there is good, even if it’s next to impossible to see it. What do you do to cope? What is your anchor?

I knew that headache was barreling through my head, I was exhausted, trying to manage the things I had to do – those flowers gave me a reprieve. Something so simple and small. But very powerful.

And, to be totally honest, admitting to myself that I simply had to stop and exist in the space I was in – headache and all – was a way to cope. Nothing was getting done, I couldn’t finish the things I’d needed to do. In the end, so what? The world didn’t stop turning. The sun rose and set that day. Planes flew overhead toward the various airports in the area. Kids walked by with their parents. Cars honked. Birds flew. And I sat, nursing my aching head. And it was okay. I was okay.

What do you do to cope? Even if the answer is nothing exciting. I sit and exist in my pain. I exist in my stress. I exist and that’s about all I’ve got at the moment.

And that’s okay.

It wasn’t my most productive day. It was a hard day. But not the worst day. There have been worse, I’m sure there will be in the future. But I got through it.

We find a way.

May this week bring you ways to cope, ways to thrive, and ways through the hard stuff.

Peace and painlessness,

Beck ❤️

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