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.
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.
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.
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.
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.
So, yesterday was the first ever seizure my dog, Sidka, has ever had. The seizure itself lasted for a good few minutes, and when he came to, he was aggressive and disoriented.
Now, my eldest sister got bit during the ordeal and is terrified of him. The only reason she was called was her experience as a vet.
She expressed her want to have him put down. But, you wouldn’t do that to a human, and I don’t want to do that to my dog.
I now have to keep him away from my niece and nephew when they are around, and now my eldest sister who is off of work the next few days. I’m not sure what to do.
If there was someone we knew in the area that would take care of him and know what to do, it would be one thing. But right now, there isn’t and I’m not going to put my baby boy down just because he’s sick.
The vet says that most dogs often only have one seizure in a lifetime. Sidka is on seizure medicine because it lasted so long and was so strong for his first seizure.
If anyone has ever dealt with this and can give me some advice, that would be great. I live in a crowded, small 3 bedroom “house” and have no money to move thanks to a very high rent keeping me in place.
I live in the deep boonies. Where the people believe the only good animal is a dead one and the “Humane Society” here is the pound- where you’re lucky if they hold a dog for a week before they kill them.