Monthly Archives: February 2019

Unique??

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Someone told me today that I should write because I have a unique experience and perspective. Huh?

Frankly, I don’t feel unique.

Yes, we all have different life stories, different ways of looking at things, different things we like to do, different … well, just differences. We’re all unique.

I’m no more unique than the next person, nor is that person any more unique than me.

If I write it’s simply because I feel like writing — at least writing gives me someone to talk to — even if it’s just this computer screen.

And, if I’m going to write, then maybe I should have something to write about.

So … as I sit here pondering what she thinks makes me, or my perspective, “unique” … I have to figure out what’s “uniquely” and authentically me.

Hmmmm……

I’m short. Billions of people are short.

I’m a woman. Trillions of people are women.

I live in the U.S. (currently) as do many many other people.

I’m originally from Minnesota. That’s not unique except it means I’m accustomed to cold weather, giant mosquitos, and understand what “Minnesota Nice” means.

I’m a military wife. Most of my friends are military wives and many many more who aren’t my friends are military wives.

I was born with a chiari malformation. That’s a bit more unique as it’s a supposedly rare congenital malformation that makes the body go wonky and creates a whole host of issues — especially for people who experience head trauma.

I have a history of head trauma. Still not all that unique — even though it came from a combination of sports injuries, car accidents, and an abusive ex-husband. Whooped-di-doo.

I had two brain surgeries (posterior fossa decompressions) to try to fix the chiari malformation and some of the head trauma repercussions. That’s a bit more rare, but loads of people have brain surgery. Don’t they?

I have chronic, complex, and rare medical conditions that have left me “disabled” — which has been a bit “limiting” on life. Yes, that does give me a somewhat more “unique” perspective than the general population, but lots of people could say the same thing — many of us just don’t say anything because we’re often discouraged to do so. (Case in point, when I was on Facebook and would post about my chronic intractable migraine and the things I was thankful for in the midst of the pain, and a “friend” of mine told me that I needed to quit writing about my migraine because I was just bringing everyone down — she must have missed the part about the things I was thankful for in spite of suffering and somewhat because of what I was suffering. She’s one of the reasons I’m no longer on Facebook.)

I have fur-babies who I adore. So I suppose that makes me part of the fur-baby parent community šŸ˜‰ Not really all that unique — even though my fur-babies are the best!

I took up the adventure of learning to cook and bake when my life contracted to become not much bigger than the walls of my home. (My husband was deployed for the zillionth time, my doctors told me to give up driving — something about hemiplegic migraines springing up on me and P.O.T.S. causing me to pass-out fairly frequently was/is considered dangerous, grad school was given up as my body couldn’t cope with the demands of studying, and then the betrayal of someone I considered to be a dear friend sent me reeling socially causing me to pull out of all of my social commitments and give up social media; THUS I needed an adventure to go on. Being a reluctant couch potato isn’t my jam. I prefer activity and adventure. With a body that can’t keep up with life, I have to adjust life to suit my body. Silly body!)

I prefer to deal with life with a good sense of humor and the practice of being thankful; often being able to find the “silver lining” in a cloud — my cloud or yours. Supposedly that’s worthy of sharing. Maybe?

Or … maybe it’s the combination of all of it that makes me “uniquely me.”

Thing is … we all have our very own “uniquely me” we can share. That’s the beauty of getting to know peoples’ stories.

Anywho … yes, that’s one of my made-up words … you’re unique, I’m unique, we’re all unique. Be uniquely you, I’ll be uniquely me, and maybe we can share our stories, make each other laugh, and find all of the silver linings together.

And …Ā  since I’m “uniquely me” I’ll write a bit at a time about the things I do on this reluctant couch potato’s many adventures — culinarily and otherwise (for I have an active imagination, love to keep learning new things, and have dreams of Ireland).

Till next time,

Me

Biloxi Zoo

My handsome hubby and I on our first date.

Clutter(ed)

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When I was teenager my mum and dad got me a sign to put on my bedroom door that said, “Geniuses Thrive On Clutter.” As a teen, the clutter on my bedroom floor meant you couldn’t walk across it without either breaking something, slipping on something, or almost breaking yourself as you tried to trek from the door to the bed.

The thing is, the clutter wasn’t indicative of “genius” but of the “clutter” that was my thoughts and emotions. I was a bit of a hot mess emotionally after … well trauma that is simply part of my story.

Now when you see clutter in my house (hidden away in the office upstairs or the unfinished basement) it’s indicative of all the ideas, goals, projects and dreams that have gone unfulfilled. As a person with all these … chronic illnesses, trauma, and “disability” … I have lots of ideas that I need help implementing, lots of goals that I started to pursue until my body got in the way, tons of projects I started before I got too fatigued to finish them, and loads of dreams that may or may not ever come to fulfillment.

I’m learning to be okay with that but it involves a lot of grieving for what was and will never be again, what I thought would be and won’t ever come to fruition, and what I still dream of but will most likely have to rethink over and over and over again.

The grieving is somewhat mitigated by SOME of the clutter because it means that when my body is feeling a bit better I can once again pick up where I left off or start something I that’s been on my obnoxiously-long to-do list(s). SOME of the clutter, on the other hand, needs to go away because it’s merely a reminder of what will never be again — but it’s hard to get rid of because to some extent, it’s also a reminder of how kick ass I was and am.

Clutter(ed). It’s not just the office and the basement, it’s also how I feel inside. I feel a tad overwhelmed trying to determine what my body may allow me to do today AND if I do that today then will I be able to do anything tomorrow AND if I can’t do it tomorrow will it then simply be added to the clutter and the feeling of being clutter(ed) AND what of the clutter can I do something about to feel less cluttered AND AND AND …. eek! The what if’s are never ending!

So, as I sit here drinking my pot of coffee and contemplating the nature of my clutter, my never-ending to do list is taking shape in my head and the most pressing things to do are … finish my coffee, brush my teeth, go to physical therapy and contemplate what aspect of my clutter(ed) I may be able to tackle tomorrow if my body allows it. And then I think, maybe I should categorize the various aspects of my clutter(ed) according to the amount of energy it would take (physical, mental, or otherwise … I often lack all of those) and where the clutter is located (do I have to do the stairs or can I reluctantly stay on this couch to do it). And then I think, if I’m going to categorize my clutter(ed) according to energy level required I need to figure out what the various projects and goals are and whether they’re realistic or not. And then I think, I’m too tired to think about this right now, so I should finish my coffee first and contemplate my clutter(ed) afterward with a notebook, pen, and this handy computer at the ready.

And THEN I think, e’gads! my coffee is getting cold! So I finish typing this and upload it quickly, hoping it isn’t too cluttered for anyone who might hazard to read it.

Ouch, I need a new body!

Till next time,

Me

 

 

My Trons Hurt

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My trons hurt.

I did too much for this chronically ill, disabled, always-struggling body of mine. Thus, I ache EVERYWHERE, from my scalp to my toes.

Saying my ā€œtronsā€ (electrons) hurt has become one of the many ways I communicate to my husband that I will be, quite reluctantly, spending the day on the couch, could lose the ability to speak at any moment, and will most likely need help getting up the stairs and into bed later.

My hair hurts. The space between my toes is irritating me. My bones, joints, muscles, digestive system, and everything else aches. My skin is alive and everything touching it is registered. The seams in my clothes are painful. The strands of hair touching my face tickle and can only be relieved by scratching my skin where they’ve touched. I’m nauseous, my eyes are burning, and my head feels slightly like I’m under water.

The best way to deal with this is to rest — I hate resting and I’m not very good at it. I’m a person of activity, movement, drive, persistence, determination — stuck in a body that bends in ways it shouldn’t, shuts down to the point that taking a breath is exhausting, resembles a stroke victim whenever it feels like it, and fails me in more ways than is socially acceptable to speak about.

The other best ways to deal with this silly body is to have a good sense of humor (thus the ā€œtronsā€) and to live thankfully.

For instance, I’m thankful I have this computer to speak into, a cuddly puppy on the couch next to me, my dear friend Harry Potter keeping me company on the tele, and a large supply of coffee always at the ready. I’m thankful that I have a loving husband who will laugh along with me, will help me up the stairs later today, and understands that I’m doing the best I can with what energy I can muster. I’m thankful to have family and friends I can call, when I’m able to talk, who love me in spite of the fact that I may not be able to communicate with them for weeks on end. I’m thankful that on my good days my legs and arms and ability to swallow function decently well. I’m thankful that my mom taught me at an early age the hard truth about life not being fair and that it pays to have a good sense of humor.

So … what did I do yesterday that is now consigning me to this couch? I did a bit of laundry, cooked one meal, and emptied the dishwasher. And today I did myself in by daring to take a shower — where I skipped the unnecessary steps of conditioning my hair or shaving my legs. (Confession — I’ve given up shaving my legs because taking a shower, even with a shower chair, is so exhausting that I frequently need a nap afterward.)

So … be thankful when your trons don’t hurt, when your legs work, when your eyes aren’t going wonky, when your skin isn’t crying out, when you have the ability to speak, when the skin between your toes isn’t a conscious thought, when your scalp isn’t in pain, when your body isn’t failing you in socially-unacceptable ways. Be thankful for the little things, the things you take for granted, the things you don’t think to be thankful for.

I used to be able — able to do so many things I’m no longer able to do. My life has become very small, very uncluttered, very …. different from what I expected, dreamed of, hoped for, and from what it used to be.

BUT … that’s not a terrible thing. There’s much I’ve learned because my body fails in a number of ways.

However, as my trons hurt and I’m incredibly fatigued, that will have to be a topic for another day. I’ll even let you in on why I’ve ā€œdisappearedā€ from life this past year, given up social media, failed to update this blog in quite a long time, and am being very careful in whom I let into my small world.

With that said, thanks for reading this far. I hope you are able to find something to laugh about today, something to be thankful for in spite of whatever trials you are facing, and something that makes you reflect on what you may be learning because of what you’re going through.

May you find joy in the midst of pain.

Till next time,

Me