Narcolepsy; into the unknown

hippiegirlWhile I had a moment of thinking straight I thought I’d make an entry. On Friday I went to a new Neurologist.. woohoo someone who has never seen one of my “episodes” someone who doesnt know my history, someone who is going to look at me with those curious, amazed, shocked eyes and say “you’re 32 and you’ve had 2 strokes?.” Yes Yes I have. I had 2 at the age of 29 I know its young but it happens more than you realize.

I was right he said it. He also said you have paralysis episodes?? that last 36 ours?? only in one arm tho right? No.. My whole body! He started pulling up all of my medical records .. made the comment about how many times I had been hospitalized, thinks for being observant. Long story short, He referred me to another doctor. He referred me to another sleep specialist. Which is what I need. But on the it kinda ticks me off because I called his office and spoke to the nurse and asked If he was a sleep Dr. I told her what I had. I told I have seen 10+ doctors, my case is not normal. I asked her to not think I was being rude of course lol when you have been through as many doctors I have, I’d like to rule out as many unnecessary appointments as possible. He told me he didn’t know really what to do. It aggravated me,,

See with Narcolepsy emotions are a HUGE trigger of episodes. Laughing, frightened, loud noise, anger, etc.. I let my emotion get me.. that was it. I went limp as a wet noodle. Speech was garbled. I was stuck in my chair. The doctor came back in the room and asked what happened ? He joked and asked if my Honey hit me in the head.Which is nice and all sometimes it isn’t always the smartest thing to do,, you know laughter,, trigger,,. to lighten the mood. He even called his nurse in to see, “look she says some days she can run and other days she is like this!” I was able to spit out the words ” I wish I could run, but I can walk some days” I know this is rare. But I can’t help feeling like a fancy dress in the window or an orangutan at the zoo.. ohh come see what she does!! First she can talk and walk! Then she cant!

I ended up being wheeled out to my car in a wheel chair again. Damn doctor appointments!

Well I’ve had 1 cataplexy episode and 2 sleep attacks while trying to write this so sorry if the grammar is crazy.

I hope everyone enjoys their Sunday. GO CUBBIES !!

Be kind to one another!    Plant a veggie today ! Even if its a cherry tomato plant n a bucket 🙂 the kids will love them! ❤ This is what my 12 and 13 year old sons and my faithful boyfriend have built for my hippie self 🙂 hippie garden

 

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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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