Narcolepsy w/ Cataplexy; Walk in & roll out

imageAs I sit on my back porch and listen to all the birds chirp and sing to each other. I watch my pups chase just about everything that moves especially my 1y year old Pitt, Bella. To have just an ounce of her energy and spunk would be amazing even if it only lasted a day, even if it only lasted an hour.

I think of yesterday and the events that landed me in a wheel chair and to most people you would ask how? I started my morning at 6 by waking my wonderful pre-teen /teen boys up for school. After getting them on the bus I laid back down for a bit, you know to conserve energy… I got up at 8 , dressed, brushed my hair, drink, toast, medicine, and my mom and beautiful 5 year old sissy (niece) picked me up for my cardiologist appointment.  We waited for a few in the waiting room and practiced some sign language ❤ then spoke to my Dr. We talked about my latest hospitalizations and how I have lost Neurologists due to losing insurance. We talked about me falling several times and how many drs can not give me much explanations as to what is happening, including him. He is one of the Drs I do completely trust, which says a lot. lol When you’ve been to every hospital in a 3 hour radius and they either have no idea what is going on with you, shake your hand tell you ‘its nice to meet you but I can’t help and you need to go to the University”, or they flat out make you feel crazy. You tend to become skeptical of doctors. But I have to remember what I am dealing with.. The Brain.

So I got off track.. my heart doc told me my heart was good, the helix implant he put in a year ago was now permanently part of my heart. No circulation problems that they know of, its just this Brain of me causing problems. Now is the fun part I went to leave after hearing another doctor say he doesn’t know much about Cataplexy, He called it a phenomenon. No it’s not actually a phenomenon. My brain does not produce the chemical hypocretin so my sleep cycles are effected. When I sleep I stay in REM and my body never has a chance to fully recover from the day.So thru out the day it’s as if my body falls asleep but my mind is awake still.  (simple way of putting it)  Phenomenon, Episode, guess it’s all the same thing, right ?

So LETS ROLL ! I got down from the examining table, which can be a task in itself some days, I don’t know if its from the strokes or cataplexy or both. Who knows, but lets just say weeble wobble hope I don’t fall down lol I knew I was wobbly, kind of a dazed feeling but if I panicked every time I felt that way I might as well never stand up. My mom asked if I was ok? I said “yes” and continued to walk. I made it as far as the desk where the nurse was sitting. Put my hands on the edge and knew that was it. I know I slid down the counter because I heard my mom tell them that’s what I did. I heard the nurse tell the dr she fainted. I was able to mumble ” I didn’t faint I.m ok.” I cant tell you who was standing in front of me or off to my right or behind the counter.. I know they were there because I  could hear them. But I can tell you who was behind me to my left. My mom and my sweet princess., my sissy.

After 5-10 mins they showed up with a wheel chair even though I said “no I can walk.” I know better. We all knew there was no way I was walking out of there. Down a hall, elevator, another hall, and parking lot. I might as well tell my mom I will be out to the car in 1-12 hours. The worse part was sis was afraid of me. I would be too.

The rest of the day was a mess, lost my phone with a baseball coach’s number, missed baseball parade, But my shorty made it to the first game, his team all signed the his homemade quilted flag 🙂 And Best of all they won 4-0! Go Panthers!

P.S. I bought some new shades, they worked great for sneaking a lil snooze in mid game,.. Remember it is Narcolepsy I do fall asleep places :)~ ( I couldn’t help it, the other teams coach’s voice made me laugh like a light zzzzz)

Be Kind To One Another~ Peace

 

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Author: hippiegirl5

I am a 32yr free spirit, who loves being a mom, science, family, the earth, education, peace, quilting, gardens, and so much more but due to an incurable sleep disorder I am losing more and more of myself. If not from medication then from not having a medication for Narcolepsy with Cataplexy. I am writing now while I have the ability to write. I would like to help raise awareness because it is a silent but crippling disorder.

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