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.

Advertisements

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.

Yesterday

So, let’s talk about yesterday. 

I went to this supposed neurologist. I get there, and he checks my reflexes and has me walk a short distance and then tells me “tests” are normal. Also, tells me that “there is nothing that can only last hours and stop.” 

Haha, no, bub. There is, I’ve read about numerous things. Amongst these “tests” he put a vibration tool on my legs and on my way out, my legs start getting sore. Like electricity was zapping through my veins. It continues to get worse until I was in tears and swallowing screams. My concerned boyfriend then pointed out that my legs were exceptionally pale, but my toes were bright red. Almost as if all my blood rushed to the tips of my toes and stayed there. 

Since then, the pain has died down a bit, but it continues to get more painful to walk. Every step I take feels like my bones are breaking crack by crack. 

I looked up this “nuerologist” on Health Grades. He had a rating of 2 stars, and according to many reviews, he refuses to touch men. Which is why I am very glad my boyfriend came back with me. 

He was rude, impatient, and didn’t like questions.

I have my nerve conduction and an MRI on my spine tomorrow morning, but something tells me that I’ll be ending up finding somewhere else again. 
If anyone has any idea what specifically could cause my issue, thoughts would be highly appreciated.
Temporary paralysis, numbness, inability to move or feel my legs mid-thigh down. No senses. No movement. Legs pale and ice cold.

When I am able to move again, a tingling feeling happens in my legs and after about 10 minutes I can move them slowly, but weakly again. Longest episode being 9 hours as of date.

Now with pain when I walk and increasing.

About Time!

After many, many phone calls today, I actually managed to get an earlier appointment for my neurology appointment!!! 

I’m pretty sure my primary’s receptionist was upset I did it my damn self. Her explanation for why I hadn’t been called in the last month was she “hadn’t checked it in a while.” 

When I told her about my set appointment, there was pure silence on the other end for a good half a minute before she asked when my appointment was. 

If you’re not going to do your job, I’ll do it myself!!! Obviously you don’t care enough about the patient to try!!! 

She Takes Pictures of the Sun

It’s really foggy this morning heading toward my doctor’s appointment this time! I love eerie, creepy things! Fog (so long as it’s not so bad I can’t see 5ft in front of me) is one of my favorites! I took some pictures, but I wish I had a professional camera. It’s okay, though. I still think they’re pretty.