Narcolepsy; Full of words; Lab Rat

Ever feel like there are days when you have so much to say you could write for days ? I wanted to write last night but I just didn’t have the energy. This morning wasn’t an energy filled day either. We had some storms move in and they always seem to slow me down. You hear people say they can tell by their bones, or their arthritis acts up in the cold.. I started out slow with a horrible migraine, walking wasn’t the greatest, I was just in a fog. But there are many days like  that, it what get boring to write about them all the time.

So I thought I’d tell about some of my wonderful hospital visits. It has gotten to where I can’t tell you how many trips there has been. I have a back pack that stays pretty much half packed, I have been to almost every hospital in a 3 hour radius.. that’s including 2 states. 4 Neurologsts, 2 cardiologists, 1 stroke neuro, 1 hematologist, a team of neuros (geek squad 🙂 ) at a University Hospital with one of the leading epilepsy centers, numerous ER doctors, a gastro, psychiatry, did I name them all ?? LOL .. I can not forget the special Epilepsy/sleep neuro I found finally after one of the neuros said we were missing something. That we were! He referred me to the epilepsy center at Rush University in Chicago, IL… I’ve had so many EEG’s I joke that i think i can glue the wires to my head myself! I call them my dreads. (little tip,, they are easier to put on if your hair is in a pony tail) 5 day study, multiple 2 day monitor, 3 day study… I can’t tell you how much fun it is to have multiple wires hooked to your head while being video taped. Don’t forget i’m a fall risk and have seizure pads on the sides of my bed.. “oh nurse I need to pee”  When you have spur of the moment paralysis episodes, people tend to be nervous around you.

Reminds me of a story.. So last month after having a pretty quick happening cataplexy episode that lasted 30 mins full body paralysis. I started losing feeling in my arms, I lost complete use of my arms. My torso went weak along with my legs. It came and went for about an hour or so. I tried to fight it, I tried to make a bowl of cereal.. I managed to get my hands on the gallon of milk but was to weak to lift. Frustrated I went for a bowl, I slid the bowl down the cabinet and coffee maker and made it to the counter. Made it to the pantry, grabbed a bag of cereal walked a couple steps and dropped the bag and almost collapsed. I knew I was done. I yelled for my faithful honey. He helped me to the coach and finished making my bowl of cereal. I then sat on the coach with spoon in fingers.. for I don’t know how long. I could never manage to pick my arm up to get the spoon to my mouth. I was done, I was paralyzed. My speech was down to a childish mumble. Partial sentences. Now is when we have to make the decision. So I have had 2 strokes in the past but (knock on wood) it has been two and half years. I also have Narcolepsy with cataplexy. How do I know the difference when this happens? How long do we wait for it to go away for we go to the hospital? Those are the magical questions.. no one can seem to answer. Long story short by the time he got my bag packed, we got the kids in the car and got me in the car .. Days like that make me rethink not owning a wheel chair… I had paralysis for 5 hours. It took me 17 hours to get use of my left leg and my arms were severely weak up to 24 hours. I was in the hospital a total of 4 days with multiple cataplexy episodes.

I had been doing OK at one point and made it to the bathroom, washed my face and brushed my teeth. I knew i felt weak but that was why i was there .. A nurse rushed in and asked what I was doing and if I was alright I said “yeah why?” She said your heart rate is 130.. as she was finishing her sentence I said “noo” and knew I was going down. I slid my back down the wall, sat on my butt and the nurse ran out in the hall yelling whose patient is she?? What does she have going on? My nurse along with 3 others rushed in, talking about a fall. They asked my nurse what I had, he said he didn’t know anything about this part.  I got some words together and spit out “this happens, i’m OK, don’t freak out, Narcolepsy.”  (If only I had a dollar for every time I said that phrase.) They grabbed the blood pressure cuff and O2 sensor.. low and behold neither would work right.. for some reason during these episodes it is hard to get a blood pressure or oxygen level on me… another one of those mystery  questions.

It took about 2 full weeks to get full use of my left arm. My walking was slow for about a week. Ever since that trip a month ago I have been dropping things more often and my hand locks on to objects.

That was only one visit and it makes me tired, bored, and aggravated to even write about it. That one was actually one of the less stressful ones to be honest.. Lets just say when Drs think you are faking it, on something, or just wanting Ativan they will grind their knuckles into your chest.. cram ammonia salt in your upper lip while your seizing and your head is smashed up against the bed rail, after keeping you for 2 days and run tests instead of transferring you to your neuro at the University shake your hand and say ” it is nice to meet you but you need to go back to the University because I do not know” .. Do NOT get me wrong I am not bashing the medical field. A year and a half ago I worked in a hospital lab as a medical laboratory tech. I ran tests on body fluids to help doctors diagnose other people. I prepared units of blood to save people in emergency situations.. Cancer, anemia, hemophilia, car accident, brain bleeds, open heart surgery, surgeries etc and here I am on the other end now. I used to joke I was a lab rat in the basement of the hospital running the STATs for the doctors and nurses…

Now I really feel like the Lab Rat .. Ironic huh?

 

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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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