Dreams

Have you ever witnessed the moment you realize your dreams have shattered? Have you ever been able to hear the very moment each crack is placed until it simply explodes in your mind’s eye?

Lately, I have come to the conclusion wishing is for children. Dreams are what kept our hearts warm, our lives hopeful. Most recently, I’ve begun feeling quite down with myself. Perhaps it’s due to the realization I’ve never had a fruitful dream in my life, all my wishes ungranted, and yet, here I am. A mere shell of myself in regards to whom I thought I was; a charming, loud and strong girl that could take on just about anything and come out on top.

Alas, that’s not who I am, perhaps not even who I was. I believe we all, in human nature, are weak. We’ll pull up our strengths just long enough to hold out for the next obstacle, but should the tower be too large to climb, we crumble at the stone at our feet.

I realized this when I found the oldest yearbook I have of myself. In kindergarten, I was bullied, but happy. I didn’t pay much mind to their words or actions then, and I stood up for those who had it even worse than I. Now, as the tables have turned, I am met with silence and myself. The cane I walk with is the most I hear, and though the one person I love most tries, they cannot understand, and there are still issues therein between us we need to work out.

Why am I writing this? Because I looked at the yearbook picture of a hopeful girl with big dreams and lots of guts and wondered if she would cry to see me now. Would she look onto her future self with disappointment and tears in her eyes? I no longer can carry large, heavy things, I have to walk with a cane inside the house, I often forget things now and am in constant pain that rides up to excruciating waves without warning. Knowing that I might fall and not get back up, what would little me think? I look at this picture and wonder…

 

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The Shakes

A “fun” thing my legs have been doing lately is shaking like crazy. Painfully. I’m not sure what triggers it, but it continues getting worse as the days go by… 

Hoping to get in to see a neurologist soon…

Changes

A lot of things happen. Some of them good, some of them amazing, and other times it’s bad… Or, there’s occasions where it’s a mix of all 3 of those things. 

If I wrote every negative word I associated myself with on my body, I would be covered. Completely covered, and overlapping. Sometimes it’s the words we let ourselves believe that harm us most. Sometimes changes force those words to the front of our minds, and they’re screaming louder than they ever been because at one point, they were completely silent – just for a little while. 

I wonder how different those words would be if I just had a harder heart or thicker skin. I wonder why I let other people pull those words to the surface. No, I’m not blaming anyone. At least, anyone but myself. I have myself to blame. 
Everything was amazing. I could smile for a while. I felt absolutely perfect. But all good things must end, and that is why I am awake at 12:30am writing this and feeling sorry for myself. I wish I had hope tomorrow will be different. Or the next day. But life isn’t the dreams I once believed were my future. Because, sometimes you end up bringing people into the tangled, grueling mess that is your life, and it’s complicated. 

I hope I, and we, get past this. I hope I can go back to smiling again, with those voices locked away. I hope… They smile at me and join me in my happiness. 

Until then…

Who Am I?

I was never very “fit” in the sense I was never a skinny little size 2. But I had great physical strength. At 10, I could carry about 100 pounds fairly easily. I spent a lot of time outside and loved to run. I would catch just about every illness there was and scrape my knees just as much, but I would heal quickly and everything was fine. 

When people define me, they say strength. But, I don’t think they think of emotional strength. They mean physical strength. Now that that has been fading as far as my legs go, which was the strongest part of me. I used to be able to lift my boyfriend. Now it’s hard to carry two frozen lasagnas to the stove, because my legs wobble and it’s like I’m wearing the cursed red dancing shoes. 

Unfortunately, it’s a comical jig that’s being played by a jester. Falling is usually inevitable. 

With this definition that I’ve believed, for all my life, of this strength… I feel as though I am losing myself; losing who I am. I feel as though, as the things I am expected to do throughout the day become harder to deal with, I don’t know who I think I am anymore. 

Perhaps it’s my pride stinking me like a cold whip. 

I don’t think anyone believes I am in pain. I don’t think they realize it. 
In other news, my appointment with the Neuro-Bozo was unfruitful. Go figure. I tried to call another neurologist, one that’s supposed to be much better. I haven’t gotten a call back yet, but I hope I will soon.

Face of Me

I express myself through many ways. Traditionally – with my face. And through my art or fashion. Through photography and through my laughter and tears. Through my kindness. Reminding myself that no matter how dark it is, there has to be moonlight somewhere. The single tiniest positive in a sea of negativity is the thread to hold on through the storm. I’m trying to wrap that sucker around my waist and hold on. I hope you are too.

Trouble

Today, I can already tell is going to be a problem. Last night I couldn’t get to sleep no matter how hard I tried because I was in so much pain. This morning, my legs still hurt, but are wobbly, yet stiff and heavy feeling. 

Yesterday I was tripping through the store. Things I progressing, and I don’t like it. It makes me worry that my next “episode” -as my mother calls it- might be permanent. 

I can no longer feel the ground I walk on at all, even when I attempt to stomp my feet. Down here in the boonies, that’s quite dangerous. My foot got caught in a hole recently and I had to use mostly my arms to get it loose. I was walking my big dog, who helped by sitting next to me and waiting. I think he thinks we can help each other through our “illnesses” as I see many people call polyneuropathy. 

My pooch might have epilepsy. He had a grand maul seizure once and I’ve been giving him medicine every day and night. Not one since, but he seems to be concerned with everything after the incident.

Next week I go to see the incompetent doctor my primary sent me to once again, to gain any results and papers I can. Then, I will be calling a well-rated neurologist in my usual doctor-stop of 3 hours away. 
I’ve done research both online and in a few books. I plan on obtaining more when I get the chance. These doctors aren’t going to tell me that nothing is wrong. I’m sick of hearing it. I’m struggling every day just to hope I can still move in the morning. If that was them, they would be raving at anyone who would listen and demanding something for it, and then compensation for the length of time to get it. 

How many times do people have to console me from the ground before someone admits something is wrong? Is it that difficult? I didn’t even know I had polyneuropathy until I kept reading in my records “has history of” and got curious. Now, on a race to figure out when, why and how, many doctors are going to be finding me as a demanding annoyance. A ghost that constantly calls and pokes and checks up on every little thing. 

Doctor’s today need to learn that they work for the patient, not the other way around. Do not hold back information, do not say nothing is wrong just because you don’t know how to deal with it or don’t want to. It’s about the patient’s health. Not your paycheck. Get over it.

Records

Heading to my doctor to get my Medical Records to see exactly who, when, and why I was diagnosed with polyneuropathy and was never told anything about it. I looked into it a bit, and apparently that’s where I need to start. 

After I get these things sorted, I will be making an appointment – you guessed it! – 3 hours away. Back to the city where I want to scream in both anger and terror as people attempt to drive each other off the road. 

It’s going to be one hell of a ride, yet again. Will continue to update.