04/27/2023

Moving….

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

04/23/2023

Ch-ch-changes…….

Hello friends! The last couple of weeks have been extremely busy. The flu, all of the normal everyday chaos, annnnnd the planning of an upcoming move.

Yes, you read that correctly: a move. When you’ve lived in the same place for nearly 26 years – as we have – you accumulate. Seriously. You accumulate a lot. Memories and stuff. Lots and lots of stuff.

So, while anticipating the possibility that this could happen, we started clearing out Pandora’s box. That’s why we began that process a while back. And the closets, making donations wherever possible. And on and on.

My husband is my hero. He did about 98% of the clearing and cleaning that’s happened over the last few weeks. (And he can argue the point all he wants, saying I did more than I think I did. Trust me, folks, he did just about everything). I couldn’t ask for a better partner/teammate. He calms me down and makes me laugh harder than anyone else, as he’s done since 1993. He took on the bulk of the work since I was sick when everything kicked into high gear. And since chronic illness living is SO much fun, it’s taken an extra week or so for me to feel like me again. The bounce back takes time. Time we really didn’t have. But we got through it.

And now we’ll keep moving forward and prepping for this major life event. I’ve only moved twice in my life. Once, right after we were married. And then about two years later, to our current apartment. We’ve been very fortunate in this place. But it’s time to turn the page and start a new chapter.

None of these big changes are easy on my body. My system flares under stress. I think all of this happening at the same time as the flu made the whole thing last longer. I’m practicing breathing, listening to peaceful music, and using the Calm app.

I’ll keep you posted on how it’s going. These big moments are a whole process. Finding a place, cleaning/keeping/donating/ditching the old, resettling once you’re moved. Ugh. But I have peace because I’m continually choosing it. Don’t get me wrong, I’m a stressed out wreck at times. But I’m constantly saying that “it will all be fine.”

And it will be.

Wishing each of you a safe, peaceful weekend.

Peace and painlessness,

Beck ❤️

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

04/15/2023

The bounce back……

It’s easy to forget what being “regular” sick feels like, rather than “chronically” sick. Like having a cold or the flu vs. my day to day issues. I forgot how it feels to bounce back from being “regular” sick. Ugh.

That seems so odd to me, considering how most days, my body feels like at least one part has been run over. I really did forget. I’ve had flares when I’ve needed my inhaler, but I haven’t had a week when I needed my inhaler around the clock in years. Thank goodness. This flu kicked my ass. The two situations: chronic vs. regular are very different. At least for me.

Don’t get me wrong, I’m doing WAY better than last week. But, overall, I’m sore and worn out in completely different ways from the usual. And my inhaler is at my side, although I’m not needing it constantly. So that’s good.

I think the pandemic – and then stroke – forced me to be extra, extra careful. Wearing masks in public places, avoiding crowds, etc. But, like most people, my immune system was out of practice for handling the annual ailments that knock so many people down each year. By the time I was easing my own restrictions a bit (more fool me 🙄), my body was down with the flu.

Since even before I was diagnosed with lupus, (which turned out to have been on August 18, 1998. I found out as I’ve continued to clear out/organize our apartment), whenever I’ve been sick, it’s taken more time to bounce back than it previously had. Having an autoimmune condition makes it harder to heal quickly. So, I get sick, recover from that, and then have to recover from the recovering. It’s annoying. The spirit is willing but the body is essentially laughing in the spirit’s face. It’s mostly the sense of full body fatigue, that’s the hard part.

There’s a lot going on at the moment, so I need to keep moving forward as normally as I can. It’ll take a bit longer, but that’s okay. On we go.

Wishing each of you a safe, peaceful weekend.

Peace and painlessness,

Beck ❤️

04/12/2023

Coming along…..

04/07/2023

Flu…..

Sunday night, I’d started to feel a bit off. I needed my inhaler. When I woke up on Monday, yikes. Massive headache, the feeling like I was caving in on myself (as weird as that sounds), more inhaler, rest.

By Tuesday morning, I knew something was wrong. I’d done two covid tests, both were negative. But I wasn’t getting any better. My sister (the nurse) told me I needed to get a formal covid/flu/rsv test. I had it done and the result came up as positive for the flu. Excellent. 🤦🏻‍♀️

Wednesday and Thursday passed much the same except the cough was becoming more of an event.

And that is why, on this quiet Friday afternoon, I took myself to the local CityMD. The doctor listened to my lungs (all clear, thank goodness), checked my ears (all good there too), gave my throat a once over (no issue), and ultimately said I was going through the motions of having the flu. He prescribed a couple of days of steroid, some Flonase, and continued use of my inhaler. My inhaler has become my new best friend, this week. Going from hardly used to used as prescribed was a big deal for my buddy, Albuterol. 😂

So that’s that. I haven’t had the flu in years. I’d like to not have it again. Ever. This debacle caused me to miss the wake and funeral of a beloved friend. I’m devastated, but there’s nothing I could do about it. I also missed helping a family member move. And accompanying another to an important doctor’s appointment. The timing, as per usual, was fantastic. 🤦🏻‍♀️

But we can only control the things we can control. Everything else is out of our hands.

As for this week’s joyful things? I’ll simply wish everyone a Happy Easter, a Happy Passover, and a safe and peaceful weekend to all.

Here’s to getting better. Or, better yet, not getting sick in the first place! 🤦🏻‍♀️

Happy weekend.🐰🐣🌸

Peace and painlessness,

Beck ❤️

04/05/2023

I have the flu…..

04/01/2023

Someone else can take the wheel…..

Have you ever wanted to let someone else take over the decisions and planning, the schedules and the stresses of your medical life? I often think how nice it would be to not be the CEO of mine. Wouldn’t it be lovely to pass that responsibility to someone else? Even for a day? YES. Yes, it would.

My reason this time came in the form of unexpected test results. Not the surprise one wants when getting blood work done. Let me backtrack.

Last week, as I mentioned in the blog and videos, I saw my hematologist. Since he’s a part of the bigger healthcare system that most of my doctors belong to, all lab results get loaded into MyChart. It’s a helpful app that enables patients and caregivers to communicate, make appointments, see test results, etc. That’s how I saw the elevated D-dimer. Saw it. Freaked out about it. Panicked some more. And then, finally spoke to the nurse practitioner about what it means. D-dimer is the protein that forms when clots have been broken up. Soooo….. I had clots forming and breaking up in my body?!?! Commence the freaking out portion of the program.

To be clear, every time they’ve run that lab since the stroke, it was way, way, waaaaay in the normal range. Negative. Nothing to see there. Just how I wanted it.

So last Friday, in my head, I was hurtling towards disaster, probably needing blood thinners again. The elevation, though “slight,” was enough to scare me. In reality, my doctor is not panicking just yet. It’s a watch and wait situation. “We’ll repeat the labs in 6 months.” At that, I was thinking, SIX months?!?! I didn’t want to wait that long. That’s an eternity when you’ve gotten a bad result of any kind. I was imagining tons of clots forming and threatening me around the clock. When I pointed that out, the NP said they could run it again in a week. That calmed me immediately. If there was some dramatic problem, waiting a week wouldn’t be the end of the world. I hoped.

Friday morning came. My d-dimer is back in the normal range!! Barely. But I’ll take a barely normal over a slightly elevated any day of the week. Yay!!! Good news and tremendous relief. Joyful things abound!

BUT……… the reason I wished I could hand over control was a separate lab result. One that, according to MyChart, came back normal. I guess it wasn’t “normal” enough.

My iron. 😒

Last Friday, the NP said, “we’re really more concerned about your extremely low iron.” My low iron? What the heck was he talking about? I went back into MyChart and found the result and said, “it wasn’t flagged as a problem. It’s in the normal range. How high should it be?”

He explained that it should be “at least 50.” At least 50? Mine was 8.9. 😬 What did that mean? Well, I’m having to take supplements for the foreseeable future. He started talking about the various forms of supplements and how – if I didn’t tolerate oral iron – I would have to get IV iron infusions. Whoa, hold on, STOP! I was like, “wait a minute, can I try the pills before we start talking about IV’s?” I don’t need that information right now. (Shudders).

Then I remembered that iron has to be taken a certain way, but couldn’t recall if it was with or without food. I asked family members who’d taken it before. Then looked it up and saw that it’s an “on an empty stomach” type of supplement. I decided to talk to my pharmacist about where I should add it, between all of the other pills. Could I take it with my meds, first thing in the morning, etc.?

Iron can be hard on the GI system, causing all sort of fun side effects. I wasn’t sure if it would affect the absorption of the meds that I take as soon as I get out of bed. According to my trusted pharmacist, no. But he felt I that could take it in the afternoon with OJ, since it’s best absorbed when taken with something acidic. And since I don’t eat between breakfast and dinner that seemed like the perfect time.

For some reason, the thought of incorporating iron, (with all of its potential issues), into my carefully laid out medication schedule completely threw me into a tailspin. I was so amped up and just wanted to skip it. I knew I couldn’t. Sometimes, I wish I could just pick up the schedule of meds and appointments and everything else from someone who’s set it all up for me.

When you’re a patient in the hospital, the doctor or NP orders meds and they’re laid out and administered by a schedule maintained by staff nurses. For example: q.d. (every day), q.6.h. (Every 6 hours), q.8.h (every 8 hours), and so on. But as patients out in the world, we’re prescribed meds the same way, obviously, but no one brings them to us. No one manages all of that. It’s up to me to make sure that all of my 16 daily pills get taken/spaced out appropriately/refilled/etc.

I know it might seem silly to some. But it’s exhausting, if I’m honest. I’d love to have someone else take the wheel. Someone to deal with everything that comes with managing a chronic illness.

I’m not trying to whine, I’m really not. But it hit me last week. I didn’t want to add anything to my day. Especially something that has the power to mess up my stomach. Nobody wants that.

As I write and edit this blog, (on Friday night & Saturday morning), I’m struck by the level of upset that this seemingly simple thing caused me. With time and perspective, I realize I was amped up unnecessarily. I can handle all of it. I already do. And, chances are, I would not have let anyone else take charge. I’m too much of a control freak.

But it’s nice to imagine someone else having to deal with it. Even for a day.

Here’s to wishful thinking, getting a break every now and again, gaining perspective, and calming down. Wishing each of you a low pain, peaceful weekend.

Peace and painlessness,

Beck ❤️

03/29/2023

I don’t want any trouble…..

03/24/2023

Lasting impressions…..

Earlier in the week, I walked over the impression of leaves, long ago pressed into drying cement as I’d done countless times before. I also stepped over the tiny paw prints of a wily raccoon who failed to see the “wet cement” signage at the time this portion of sidewalk was drying. I walk over these sites literally every day. But on that day, I was struck by an idea. As if someone had hit my “pause” button, I retraced my steps, got out my phone, and took the pictures. It was as if the leaves and paw prints were speaking to me, “stop moving and really see us!”

I don’t know why, but they reminded me of initial impressions with new doctors. Lasting impressions of new medical interactions. Forcing me back to the days of being called a “freakshow,” the days of not being believed. Of not being believed even AFTER I’d been an established patient of many YEARS: “You’re sweating. It IS summertime, after all. It’s definitely not spinal fluid.” (It definitely was spinal fluid leaking from my lower back, as I explained to NOT my doctor. My doctor was at a conference. And having previously had the experience of leaking spinal fluid after a procedure, I was correct 🙄).

These stories we tell of meeting new healthcare practitioners, the ones we cannot forget – the ones we should not forget – well, we ALL have these stories, these experiences. Ask anyone with CRPS, POTS, fibromyalgia, chronic pain, really anyone with a chronic illness – especially one that you cannot see simply by looking at the person. They’ll tell you. It’s like a bad shopping experience, attempting to find that exact fit. The doctor/nurse practitioner/therapist/dentist/(fill in the specialty) that fits us best. Will they be perfect? No. No one is. But the closer we get to having a solid medical gatekeeper, one who’ll look out for us, the better we feel. The safer we feel.

But those initial impressions with the people who don’t make the cut? (Shudder) They stay with you. And they hurt. Those scars have certainly helped shape who I am now. I have lost a TON of my memories. But those medical experiences that burned me? Those are like the leaves and tiny paw prints: deeply embedded in my mind. The all important guidelines by which I have chosen every doctor since. Do they believe me? Can I actually find someone better? Will they do okay even though it might not be the greatest fit? I have to keep my boundaries up until I know the answer to these questions. And even after, so that I can be the best advocate for myself.

What have your initial impressions been of the doctors in your lives? Whenever I ask this question, there are always varied answers. But, without fail, I hear stories much like my own. That is part of why patients bond so well. We’ve experienced a lot of the same things. The same symptoms (even if they’re slightly different from person to person), the same rudeness, the same indignities. It’s not easy being in this position. No one has it easy. But having something that can’t be witnessed by others, that can’t be diagnostically confirmed – it’s just not easy being in this spot.

And I often wonder about the impression I leave people with. When a medical person first meets me, it’s all smiles and friendly introductions. Then, inevitably, they start to read my chart and become stunned by the sheer volume of information. That’s when they start to ask a ton of questions and I absolutely slam them with everything I can about myself in about 30 seconds. Why do I do this? I don’t know. Probably nerves. Or the fear that they won’t ask the right questions, so I have to give them a Beck-approved, Cliff Notes version of my chart. Ugh. I likely come across as a slightly hysterical, amped up weirdo, always dressed head to toe in black, wearing sunglasses and laughing nervously. Yup, that’s about right. 🤦🏻‍♀️😂 Good grief.

On my walk today, I happened upon these tiny prints. I think they’re from a kitten. My friends with cats, am I correct?

Whether it’s a medical interaction or just an every day one, we all leave lasting impressions on others. I try to make it a good one. I’m always respectful and kind. And I like to think I leave people better informed about what it’s like to be a patient than when we first met at the start of the appointment. At least I hope so. Hopefully, they’ll be kinder, more patient, and assume less when they meet the next person. Hopefully, they’ll leave a good impression on that patient. And endeavor to keep that impression accurate going forward.

Wishing each of you a safe, peaceful weekend.

Peace and painlessness,

Beck ❤️🌸