Recap

Crazy Past Posts

The sound quality is not very good. If you try to listen and cannot hear... basically I am saying I wanted to make a Vlog explaining a little bit about my life lately. I realized a lot of my older posts seem like crazy talk! This video clarifies why.

By the way, I continue to second guess posting a lot of these, but at the same time I continuously get reassured people relate to it and are glad I have the balls to be honest.

So, I promise I am not insane, just a tad bit of crazy! :)

Dear "N" Diagnosis: A Letter to Myself

“Dear Diagnosis” is a Blogathon by Julie Flygare inviting all narcolepsy and chronic disease bloggers to write a letter to yourself on your diagnosis day. http://julieflygare.com/dear-diagnosis-blogathon/



Here is my letter...


Dear Cara,

“Narcolepsy is not my excuse. It is the reason I forgive myself.” 

-As stated on a Narcolepsy/Cataplexy education group by a fellow Narky advocate, Katie Ratcliffe and quite possibly the best advice to apply.

Wow. Narcolepsy. I know, right? 

Pretty crazy, but dear just stop there. Do not question why, when, how, etc. All you need to do right now is take a deep breath. Kudos. You’ve been right all along. There was something wrong. Now you can take a moment of peace. It is time to breathe it all in and love it all out. Forgive yourself.

Guess what? You are not crazy or lazy! Things are going to get better. I promise. You finally have a valid diagnosis and shortly after things will start to fall into place. These insane bouts of depression have been a result of not knowing you had Narcolepsy. Everything in the past will make sense. You will be able to come to terms with everything you have dealt with for the past 5+ years. The oh so beloved "Narky" status is going to explain A LOT!

You have much to learn about this diagnosis. I realize you are just like the majority of people who have misconceptions and you will feel angry about that later. However, soon enough you will understand what this all means and have the opportunity to advocate.

Although you do not know anyone who has been diagnosed with Narcolepsy, I can assure you that you will not feel completely alone. There are supportive and aspiring communities online. This is where you will find the best advice... such as, Narcolepsy is going to be the reason you forgive yourself. 

These communities will give you plenty of resources. They will also allow you the opportunity to speak directly to the FDA about your specific situation. Yea yea! Oh, and make sure you hang up the phone when you are done talking to the FDA because they will forget to disconnect your phone line. Resulting in about a thousand people unexpectedly hearing your side conversation. Heehee.

Now I won’t lie. You will continue to live on a grey cloud filled with denial, however the sun shines much more often. It is nothing like the cards you were dealt before. Starting out, the biggest component is going to be trial and error with the medications. Just keep on keeping on with naps included!! You will find many new, fun, exciting and different ways to cope.

Also, please do not be afraid to tell people when you feel overwhelmed! You have no control over this weakness. The only way to stay strong and healthy is by letting it take control when needed. It is ok to give in. Stop hiding it. You are not crazy. You can forgive yourself.

Lastly, do not forget that quote. Now go nap away my dear! You have plenty of time to figure it all out.

Peace, Love and Happiness,

Cara (aka Emille Rae)

Looking Back

I highly encourage you to do this. It's a very good way to self-reflect based on the past. I made this list on here at the beginning of January and find it very fascinating looking back and comparing! Try listing at least 25! Also, I cannot believe how many of these clearly indicate that I could possibly have had Narcolepsy. (The parentheses are my recent updates.)

I am 24 years old. (25 now.)
I am a female. (Still am!)
I sleep too much. (Welp, I can explain that now! Damn hypothalamus! Indicator #1 for N.)
I am a hopeless romantic. (That wont change.)
I need caffeine. (Life of a narcoleptic. Makes sense. Indicator #2.)
I love cotton scents. (Sandalwood now too!!)
I want to learn about Buddhism. (Still do! Buddha is forever with me now!)
I am not chubby.
I am not skinny.
I have green eyes.
I have dirty blonde hair.
I am self conscious about my body. (I am progressing on this.)
I am pretty.
I find the mind fascinating. (Yeup.)
I rely on medication. (Still trying to find the right stuff! #3.)
I love the color aqua and black.
I have bad allergies. (Doing fairly well with these.)
I wish I had enough intelligence to work in the science field. (Still do.)
I am always smiling even when I am upset. (I run on smiles.)
I do not have a best friend. (Lies. You know who you are.)
I have become more girly. (To an extent.)
I am pale. (Sunkissed now!)
I want more energy. (UGHHH still!!! Makess sense now. #4.)
I have obsessive thoughts. (Bah.)
I am creative. (Heehee.)
I am a deep thinker. (Always putting myself in someone elses shoes!)
I over analyze situations. (It wears me out. Getting much better!)
I love water. (I went to the Quarry this summer over 10 times.)
I am silly.
I like the blues. (Ooo I dooo ooo.)

I believe in aliens.
I like yoga. (I like hooping better now!! It keeps me energetic, yet is calming/meditative!)

I like to drink. (Got me, except I have significantly decreased this.)
I like to laugh.
I fake laugh. (50% of the time is because I am not paying attention.)
I am rarely happy and if I tell you you've helped.. appreciate it. (I will tell you. #5.)
I want to be happy. (I have made strides at accomplishing this.)
I have mood swings. (Narcolepsy. Mhmm. #6.)
I have severe anxiety. (I've learned this is more due to exhaustion and not being able to handle thoughts/emotions well enough because of that. #7.)
I am tinted yellow.
I do not maintain relationships. (Nailed it. #8.)
I am lonely. (Fixed that. LOLAS!)
I like indie.
I am funny.
I want to play the guitar. (One day. Maybe.)
I love my personality.
I want children.
I am innovative. (I'd say my best skill/feature.)
I love taking photos. (Mmhm!)
I am caring.
I love nature. (Again, went to NLQP over 10 times this summer.)
I like baking cupcakes.
I want my own garden. (Did it!)
I deal with severe depression. (Significant strides due to the N diagnoses. #9.)
I want to help anyone become a better person.
I challenge myself.
I am healing.
I have a low working memory. 
I have a past. (Who doesn't?)
I like 90's music.
I love pets. (And the new job follows this passion!)
I want more willpower. (Damnnn Narcolepsy #10.)
I like to experiment.
I am an instigator. (Who? Me?)
I love to make people happy. (Yes and laugh!)
I never finish things. (Reasons why there are stimulants. #11.)
I like constructive criticism. (Makes me better.)
I want to move. (I would if I could.)
I like being a bum.
I like to snack. (Shit! I'm out of Reeses!)
I am easily distracted. (#12.)
I have a learning disorder. (N don't help this factor.)
I am above average in other learning areas. 
I want to be an art teacher. (That is a dream of mine. Back burner.)
I am in debt. (That's what college does.)
I am paranoid.
I want to start fresh. (Do I?)
I like cold showers. (Wakes me up more.)
I get jealous.
I am clumsy. (Comes with the constant grogginess/cataplexyness. #13.)
I love decorating. (That ain't changed!)
I love family.
I love bright neon colors.
I like to cook. (Yes!)
I am mental. (My brain lacks hypocretin associated with N. #14.)
I always have my toenails painted. (That they are.)
I only use black, gray or purple polish. (Yepp! Purple right now!)
I can sing on tune.
I have a terrible singing voice.
I am a procrastinator. (Lack of energy. #15.)
I am trustworthy.
I am not afraid to be outgoing. (I will gladly publicly make a fool out of myself or you!)
I want to learn more about outer space. (Still do.)
I am calm.
I am crazy. (We're never gonna survive so lets get a little crazy...)
I want to get married.
I am real.
I believe in karma. (Still.)
I like tattoos. (Many more added.)
I become easily unmotivated. (Zzzz. #16.)
I have fast processing speed. (Automatic.)
I have patience. (Thank you previous job!)
I am compassionate.
I like feeling wanted.
I am a visual learner. (Drawings as well as re-writing things in my own words!)
I am not book smart.
I hate the color brown.
I hate pastel colors. (Gives me the jitters. Weird, I know.)
I constantly misplace things. (Guilty. #17.)
I am finding myself.

Hooping? Huh?

My hooping story!

Jello Knees

I have posted this video specifically because I lost muscle tone in my knees around 6:38. This could have absolutely nothing to do with Narcolepsy because it was not really triggered by an extreme emotion. However, it could possibly be a minor Cataplexy attack. Curious to see if it continues to happen. 

http://youtu.be/pVt5Cac8NJk?t=6m25s

A Day in the Life of Narky

It took every ounce of energy to capture this photo yesterday but here is a story of what life is like through my eyes. I am not trying to make you feel bad but more or less trying to get people to have a better understanding. Narcolepsy is an invisible disease. I have never been very open about discussing the symptoms because I sounded lazy and crazy to everyone until I was recently diagnosed. As well as, the encouragement to spread the word from advocate groups I follow and support.

First, let me give you a little past information... I was recently diagnosed with Narcolepsy. Before this I struggled with spells of depression for years. Nothing was helping so I made the decision to drop the classes I was taking towards my graduate degree and quit my job. I had to take this time out for myself and figure out what I needed to do to feel better while I could. This ultimately led to the diagnosis of Narcolepsy. So, here I am taking time out for myself this summer... but now that I have it all figured out it is time to find a job that will be more appropriate then being constantly exposed to overwhelming situations when I was have trouble handling my own!

Anyways, yesterday I had a second interview that was exciting, yet nerve racking, so I was feeling a little drained. It went really well until, at the end, they gave me worksheets filled with word solving and math problems. With twenty minutes to finish them, I froze. I read each word problem at least 3 times with no comprehension of what I had just read. Brain fog was haunting me at the worst time. 

Brain fog is the biggest symptom I battle. It feels like I am constantly looking through a cloud in life. It is always foggy and takes a lot of effort to see clearly. My vision easily blurs and it takes extra energy to concentrate. Well I could barely read the page. I put my head in my hands and wanted to cry. Mind you I also have not done math problems in years. Yeah... I bombed them. I told the interviewer that I could not do the math problems but I can assure him if I were to refresh my memory I would have no problem (or maybe I just need a boost in this new medication since it is obviously not doing its job).

At the moment, I am in the process of some medication changes so my energy is low, concentrating is difficult and daily chores have been building up. I came home pretty stressed after that incident. "Can I do this? Am I ready to start a new job?"

"Cara stop! You've been successful before... you'll figure it out. You will get your life back together soon." That phrase sounds so familiar now days. As I look around my house I realize that I really want to get my life together because I am thoroughly bored without a job. Searching for anything to help I realize my house is messy.

As I attempt to take out the trash, clean my house, do my daily dishes, put clean sheets on my bed or basically anything productive... I am overcome by the fogginess again. "What am I doing? What was I going to do next? Shit! Well since I cannot remember and I am standing in the kitchen I'll just get some chicken out to de-thaw for dinner. Which in this case, I have learned to prepare myself... I put it in the fridge to thaw incase I fell asleep and it goes bad."

After getting the chicken ready the oh so lovely sleep attack hits, which is an overwhelming urge to sleep. I should've known... fog and forgetting are clear indicators for me. And yes, everyone gets the urge to nap but it's a lot different for people with Narcolepsy. To us it feels like we have not been asleep for 48-72 hours. 

Can you seriously imagine trying to get anything done constantly looking through a cloud and then being attacked by ninjas that make you feel that you have not been asleep for over one full day?! This is exactly why I was driving myself insane before I knew I had Narcolepsy.

Anyways, I sat down on my couch for a breather hoping it would pass but of course it didn't. "Come on fog, clear because I got stuff to do!!! You've haunted me enough today!!" Except before I knew it, I had fallen asleep with my feet on the ground, shoes on my feet, glasses on my head and all the lights on. After awhile I realized I was sleeping and needed to wake myself up. It becomes an internal battle.

Finally, a few hours go by and I am able to force myself awake. I realize it is way past dinner time and my stomach was growling. Thankfully, I had enough energy to feed myself and my puppy but that was about it. The night was done. I felt exhausted.

The trash never got taken out, the dishes are still in the sink, I have yet to clean and I fell asleep on top of a blanket. I guess this new medication isn't doing justice. Welcome to a smidgen of Narcolepsy.