We Are the Champions- Even If it Doesn't Feel Like it

Having MS is like a scavenger hunt where the items keep changing, the clues keep changing, the rules keep changing, and just when you think you have finished the list, there’s suddenly a whole list on the other side. And then maybe, just for fun, some items on the list have disappeared (I could have sworn _______ was on there). I was diagnosed in 2004. You would think by now, I would be able to tell the difference between MS symptoms, flares, or something entirely different.

Yet…there are times it’s still a guessing game.

Like the game I’ve been playing for years: Is it MS or Is it Raining. There are new variations that include Is it An Errant Hair or MS, Is it An Allergic Reaction or MS, and Is it a Migraine or MS. One day, I was playing the Errant Hair game, and I looked at my hand to brush off the invisible hair and THERE WAS AN ACTUAL LIVE SPIDER CRAWLING ON MY HAND.

You get so accustomed to ignoring the weird sensations that when there’s actually something on you that shouldn’t be there it almost feels like a betrayal. It’s the rule change right there in your face. Or hand, or leg, well you get the idea.

When I felt that weird pain on my left side by my hip, I thought uh oh. I knew exactly what that was. I called the orthopedic surgeon who replaced my right hip. Two office visits, a couple x-rays, and an MRI later, I have surgery scheduled to replace my left hip. I wasn’t messing around this time.

In another post I recounted the details of my saga leading up to the surgery. I thought I was a strong advocate for myself, but re-reading that story, I was still a tad complacent. I waited far too long to get a simple x-ray which could have shortened my saga by at least a year.

I know, it’s not entirely my fault- I should be able to rely on medical professionals to guide me. And, because MS symptoms can be insidious in the way that rarely do you see 2 cases that present in the same way, it’s easy to throw everything in the MS basket. Still, I could have advocated more insistently (though I tried So. Many. Things. to get relief).

Which brings me to what I really wanted to say: be your own champion. No one knows your body like you do. If you don’t think your doctor is doing everything possible, challenge them. Do your research. Ask questions. Present alternatives. If they brush off your statement without explanation, find a new doctor. It is so important for you and your medical professional to be a team, especially with insurance companies looking at dollars before patient welfare. You need a strong ally to fight with you.

I am so fortunate that my neurologist is amazing and I love her. She’s very practical, level headed, and listens to me. When I am wrong, she will educate me, not lecture me. If she doesn’t know the answer, she flat out tells me that she doesn’t know. One time we Googled something together in her office because she was curious what it was.

I hope you have an amazing medical professional in your life. Even without MS, navigating the things we feel can be overwhelming. Having an understanding, engaged, invested, concerned medical professional can make all the difference. You may not win the scavenger hunt but you might have some guidance to work through it.

 

 

UnEggSpected

Easter used to be an important holiday in my family. I think it was my dad’s favorite holiday; I believe he liked Easter even more than Christmas. I don’t know if it was because his birthday was toward the end of March so sometimes Easter would be close to or fall on his birthday, if it was because of the traditional Polish food, or a combination. It could very well have been something else entirely. Whatever the reason, my dad loved it.

The traditional Polish Easter breakfast at my house included fresh kielbasa (with marjoram; HAD to have marjoram or it wasn’t holiday kielbasa), seeded rye bread, a butter lamb, the Placek my grandmother used to make, then later we bought from one of the many Polish bakeries that used to be all across town, Krakus ham, colored Easter eggs, potato salad, Niagara chocolate, and a cake my sister would make when she and her family would come to Buffalo for Easter.

Most years when her kids were younger, the whole family would come to Buffalo for Easter. We had some normal traditions, like the food, but one tradition was so odd that I’m sure it’s got to be unique to my family. As many traditions do, this started quite accidentally.

Way back in the 1900’s, Niagara chocolate would box their dimensional chocolate. It would be in a bed of shredded plastic or paper (aka EastroTurf) and boxed unlike today where it’s only wrapped in a plastic bag. One year, my mom miscounted the easter baskets, and instead of a cute pastel basket, the Easter Bunny hid my candy in a box. Not quite the “I got a rock” experience of Charlie Brown, but sure, I felt forgotten.

When I pulled out my Easter box, my niece and nephews thought that it was the coolest thing ever. They asked all year if this coming Easter would be the one where the Easter bunny hid a box instead of a basket. One by one, it turned into a rite of passage that the Easter bunny brought them a box instead of a basket.

Today is Easter. My kids are hundreds of miles away and I don’t feel the need to continue Easter traditions without them. I slept late. I made carrot cookies. I talked to my kids. That’s as traditional as today was.

*cake I made circa 2019

I hope you enjoyed your day, whether it was a holiday, a regular day, a rainy day, or a sunny day.

Leave me a comment and let me know what you did!

 

 

 

curses, it's the Blinking Cursor

The dreaded blinking cursor. Daring you to fill a page with words that make sense, words that are interesting, and words that say something. The last category for me would translate to something that people want to read.

That is a constant battle for me, the battle of who cares. Who wants to read my mundane anecdotes? Who wants to read about my musings? Who am I writing for? Then, when I get to that last question, I realize the answer is me. I am writing for myself. If someone else wants to accompany me on the journey, that’s fantastic! But, I will still keep writing.

On the days where it’s a struggle, I might describe the process to myself. I will try to be more mindful of what inspires me. I will try to establish a working title or a descriptive sentence. Sometimes it works, sometimes it doesn’t. I recently mentioned that when I was writing more regularly, everything was inspiration for a blog post.

I wasn’t as concerned with anything close to perfection- I was more concerned with sharing content. I also think a major part of my consistent posting was because I had so much turmoil in my life that I needed a safe outlet.

My life is calmer now, which is great, but it also means that I don’t have ideas served to me on a platter. I need to forage for them, mine them from my daily life. Because my life is calmer, I struggle with believing that anyone will want to read about my unexceptional experiences. Why do I believe chaos equals creativity? Or at least fuels it? Why do I believe chaos equals interesting? This fuels the battle of who cares. There I am, staring at the white page, blank except for that (sometimes) intimidating blinking cursor. Mocking me, daring me to put something (anything) on the page.

I must confess, the cursor wins the battle most of the time, which is why my posting is sporadic. The blinking is almost audibly saying who cares. I’ve thought about joining a writing group, and I haven’t decided against it, but I haven’t done it, either. I’m not sure how I would do with deadlines. What if I got a prompt about a subject I wasn’t interested in, or knew absolutely nothing about? Knowing me, I would spend so much time researching the topic, I would miss the deadline.

Here I am speculating, almost talking myself out of trying something that might actually help me. Is it fear? What if I really put in an earnest effort? What if I finished one of my stories or the novel I’ve started so many times? What if I pushed my fledgling story out of the proverbial nest and it fell instead of soared? My hope, my fantasy of being an author would likely splat as well.

And there it is. In black and white.

To quote Stephen King, time to get busy livin’ or get busy dyin’. I think I’ll look for a writing group.