New Drugs new study 2020

 So i was reached out to for a medical study due to my cataplepxy being so active and out of sorts from most others. Meaning multiple in a day not just week. With only small amount of people diagnosed with it there finding it hard to find medical treatment. So i get to come and be poked and praded and monitored for 24hrs pretty much. 

This provided something to do during covid.  I love going to the research center. They have friendly staff and everything. 

Whats it like in the day of someone with Narcalepsy type1

 Sometimes when you wake up your just lazy and don't want to get up.  But for someone like me its more of a I cant I'm drained i'm tired let me go back to sleep.  Knowing you have places and things to do you force yourself to get up.  Only to fall back to sleep while trying to put your shoes on.  Having that continuous fear of will I fall asleep somewhre I Shouldn't or do something I could be in danger for.

For many think narcalepsy just means you fall asleep all the time and thats false.  I could stay awake one day all day and than turn around and the next not even last more than a couple of house.  My biggest fear anymore is working out, or going swimming.  Continuously afraid what if something happenes and nobody notiecies untill its super late to do anything to help. So instead I avoid any and all things to try and help control  syptoms.

Leaving a uneventful life being afraid to go do the things you once enjoyed fearing you may get rt or someone else.  Not being able to visit friends because it's no safe to drive that far anymore. 

New Med Trial Nov 2017 - March 2018 (LIving with Narcalepsy type 1)

So I went to Orlando in November to have a sleep study done to confirm that I had narcolepsy.  As i'm filling out the forms I start to have a catalepsy episode and freaks everyone our because they hadn't seen one.  I found it funny seeing as they were looking for people with both.

Once a month i would do a sleep study over night and once a month I would also do a check in and obtain more meds. And it would continue until March.

Its a study for a similar drug called Zyrem which is a drug made of sodium oxybate and is reguried to be take twice a night about 4hours apart.  There are many risks with this drug due to takeing to close or double up on dose by accident.  They also typically will pass out within 5-15mins after taking them.  Its a similar mix to that of the Date Rape drug which Doctors have learned also can aid in the stage of REM Sleep.

The drug I will be trying is to be taken once a night and than sleep for 8hours.  Your not alloud to eat 2hrs before taking due to it possible not working correctly.   There is a chance that I wont get the actual drug but a placibo because its a blind test.

UPDATE of STUDY

So i feel that I recieved the real deal the first night I took it I woke up by 8am after not being awake and out of bed for years before 9/10am.  I normally would start fighting sleep around 3-5pm.  And at one point the only time I was awake was for Work, School, or activities I needed to be at.  The first week on this drug my eyes hurt they hurt so bad it felt like I wanted to claw them out.  IDK why but I strongly beleave that it is due to my eyes not being open as long as they had been for years.  I felt wide eyed and awake for what felt like the first time in my life.  I would ask "where have I been all this time, OMG is this what being awake turely feels like."

Graduation with my certificate in photography and associate degree.

What does it mean to graduate for someone with disabilities learning curves. I was told when I learned that I was at an 8th grade reading level that it would be impossible for me to pass College English. I tempted to go back to school for sign language and I figured if I was going for sign language I might as well go for a degree. I took three sign language classes in realize that I hit my learning capability in sign language I have a passion and want to be an interpreter but my brain isn't grasping the visualizing the spelling using the letters to see the word but that may also be because my spelling is bad. Then I learned that they had a photography program I've always loved photography.

I was born in California my dad was in the army and he also did photography I remember playing at the photography studios well Dad would be in the darkroom doing prints. He would take me to Indian Pow Wows and hot air balloon shows and also to the air shows at such a young age he always had his camera and it inspired me to I want to be like him give me the means of capturing life and it's moment.

I believe a photo can tell so many things from a family portrait to house fire pets flowers or just landscape there is so many different meanings that happened would it comes to a photo and sometimes they can be oh wow and others there are only meaningful to those that were their present when they were taken. Photography can be calming fun. So I cheat my certificate in photography and I achieved my associates of interdepartmental because I wanted to prove I could do it I wanted to prove that someone with ADHD Oppositional Defiant Disorder anxiety depression and even recently narcolepsy with cataplexy could accomplish overcoming touch a conflict proving tell everyone that even though I can't spell where the hell are beans I have the passion the desire the want the need to accomplish it. Friendship most of my classes when they were Hands-On I succeeded I excelled I even. The teachers list 1 year semester for being so driven and passionate about my overcoming the hurdles that were thrown in front of me. Minion people while doing photography and networking and everything that it's just been inspiring I've made friends very very driven very inspirational and encouraging in every manner a group of young women the that I would have never have met if I had not taken that step to get into photography to overcome and prove it could be done.

Being Published for my Photography

MODEL: FAITH

MODEL: ALYSSA

Being purchased for my own work is so rewarding. I hope to accomplish many more.

Finding a doctor who listens.

Went to a new clinic for uninsured people. Here though MSU and Mercy Hospital

Put on Zoloft and all tired Ness goes away.

I find it sad i must goto free clinics to be listened too.