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.

Narcolepsy: Not Alone

Narcolepsy is a very misdiagnosed and misunderstood disease affecting 1 out of every 2,000 Americans. This leaves us feeling very alone. 

I am thankful I have been diagnosed at such an appropriate time. Lots of great opportunities coming up for this growing community. I keep finding out more and more each day. 

There are some really great advocate groups. One of them, Julie Flygare, has started a "Narcolepsy: Not Alone" campaign. Here is my photo submission shared amongst the community. 

You can find more about the campaign here http://julieflygare.com/narcolepsy-not-alone-gallery-map/.

No Rain

When a song describes you...

First Step to Clarity

Today marks the day of my sobriety from alcohol and my medications (I am not an alcoholic by the way. I just tend to try and solve my problems that way). I am a little nervous but then again excited. I have made this decision because I am taking some time off work, so why not do it now while everyone knows I am struggling with trying to figure out what the heck is wrong with me, rather then having to go through a crazy process all over again. 

The reason I am going off my medication is actually for a medical sleep study. I will be off of them for at least 6 weeks. It takes one week to lower the dosage a step down. Another week to lower it one more time. Then the third week I will be anti-depressant free. For the study I must then have two weeks week off of the medications. I will then have the study done. After, I will then decide, based on how I feel, if I want to go back on them. 

As most of you already know alcohol is a depressant. When I drink any type of this substance it diminishes the effects of the medications. If I over drink it changes my perspectives, mood, etc. When I am in an off mood I become a totally different person. I become very bitter, mean and angry which is extremely, extremely uncommon for me. I am never that person sober. So, since it is very unhealthy to begin with, let alone while attempting to go off of the medication, I have decided sobriety is the best option for me. 

Demons Live Inside Me

I constantly encourage my friends and clients to let go of their worries and focus on the present moment. Breathe, take in the positive and exhale love to themselves and the world around them.

However with me, there are days where demons live inside my chest. They are immortal. They love to bounce back and forth, shaking my heart, squeezing it in their bare hands, stabbing my insides in attempt to make me bleed. I try to apply the practices I encourage upon my friends when these fuckers arise from hell but they overcome any sense of relief. Without provoking, it is chronic and exaggerated tension that physically hurts. It is so uncomfortable. I shake. My muscles twitch. I become nausea. Lightheaded. I cannot eat. I cannot fully breathe.

Recently, the demons arise as soon as I awake... before I have had the chance to process any thoughts. This is what makes it uncontrollable. I use coping skills. Mainly attempts to engage in activities that will distract me from these feelings. Although lately, they instantaneously come back to burn me once I disengage.

It is a painful whirlwind of stress. The roots that keep me grounded, sane and stable are brutally ripped from the dirt. Control is lost. The demons start to over take me. All I can do at this point is shut myself off by falling sleep or taking an anti-anxiety pill. Both temporarily put the demons down to slumber. Yet both exclude me from the world because I end up sleeping with either option. 

I surely hope I will soon defeat this stage of hell. I am becoming exhausted fighting this battle. It has been a week so far of excessive tension. I do not want to fall off of the edge. I am looking down into the hole that I fell into these past few months. I managed to climb back up thinking I was heading for steadier ground, but I have found myself yet again with my toes dangling over.

Yet, regardless of how I really feel, emotionally and physically, I breathe it all in and love it all out.

Releasing the Uneasy

If you are looking for perfect you'll be looking forever. Take what's good and what's good for you at the time. So, what am I looking for then?... People to accept my flaws. Help me through my crazy, irrational bullshit and stupid expectations. And when it comes to someone that I am "talking" too... this is especially important. 

Of course, I am a firm believer of living in the moment but there comes a certain point in time where one must look outward. I will not waste my time living moments where the flaws that I have made create what is seen as drama and are unaccepted. I do not deserve to be unaccepted for as accepting as I am. It's a two way road. Every type of relationship that exists deals with this. Relationships with friends, family, co-workers, etc... All end up compromising at some point. Mistakes are made. Flaws happen. Drama and bullshit is unavoidable. I do not want to go back and forth.

Regardless of the outcome, I will take from this experience that I was able to incorporate positivity and different ways of thinking into your life. I will also continue to do so. You truly have all capability to be an amazing person just like I see you as. Please do not ever forget that.

I thank you for keeping me sane. 

Insane in the Membrane

There is an emotion that exists inside of me. It doesn't allow me to feel happiness or release any sadness. I can still function in my daily activities but my mood is decreased. One positive is at least it's not pain or complete sadness. That could potentially feel worse. It's just this feeling inside is punching and kicking. If it explodes I could go insane.

Key Lime Makes Me Feel Fine

Key West thoughts...

-The place to leave your worries behind. 
-Confidence.


If I left tomorrow, what would I leave behind?

-School
-Money
-Family
-Friends


If I left tomorrow, how would I feel?

-Fresh start
-Worries are behind me
-New motivation
-Warm

Prime Target

My life is full of things to be appreciative of yet all the negativity, that I am uncontrollably surrounded in, restricts me from being able to feel any appreciation. I feel like my life is a never ending circle fulfilled with heart aches and life lessons. 


I am handcuffed to this negativity and the key is yet to be found. I have tried so hard to figure out a way to release myself. Then there are those moments where I believe I think I have found the way out but I end up getting slapped in the face.


These handcuffs also make me a prime target for depression and anxiety to make their appearances. I have no way to win the fight against them since I am locked up. I have become a victim of their symptoms. I have become someone trying to survive the fight yet I become tired of trying so hard. Occasionally, I give up and let them take the best of me. 


I am constantly looking towards the future dreaming of the time I find the key and the fight becomes easy. 

DSM

For those people who do not believe mental illness exists, suck it. It is not easy posting this type of stuff, however I always end up reassured it is helping someone else by doing so.

I am no longer afraid to admit what I go through. I am not doing this for attention and I do not want your sympathy. I am simply advocating mental illness. It is real. Do not ignore it or signs from people you know.

...It is reported Ms. Miller first sought treatment for attention difficulties in 2007, which resulted in the suggestion she quit taking college courses at that time. She stated that she experienced a severe depressive episode in 2010, but was able to hide the symptoms. 

Regarding anxiety, she states that she has been diagnosed with Generalized Anxiety Disorder. She reported being tested for depression in December 2011 and diagnosed with Mood Disorder NOS. She reported seeing a therapist twice at The University of Akron's Counseling Center where they advised her to go to the hospital and she declined. She reported attending 2 other sessions with various therapists. 

Regarding psychiatrist hospitalizations, she reported she was admitted to a psychiatrist unit for a few weeks in November of 2011, and following in a Partial Hospitalization Program. She reports having suicidal ideation prior to hospitalization. She is currently engaged in psychiatric treatment.

She described her mood as somewhere between "normal/stable" and "depressed, sad or blue". She admitted she oversleeps and has trouble concentrating. Regarding anxiety, she admitted to feeling nervous, anxious, or on edge, not being able to stop or control her worrying, worrying too much about different things, trouble relaxing, being so restless it can be hard to sit still, becoming easily annoyed or irritable, and feeling afraid as if something awful might happen. 

She stated that she worries about her future and her ability to be successful. Regarding depression, she reported loss in pleasure of in activities that were once found enjoyable, sadness, feeling down on herself, restless, irritability, thoughts of better off dead, fatigue, and difficulties concentrating. She stated all of the symptoms listed previously have been extremely intrusive and affected her daily chores and activities.

Axis I    
Generalized Anxiety Disorder
Major Depressive Disorder, recurrent
Learning Disorder NOS

Axis II
Deferred

Axis III
None reported

Axis IV
Interpersonal difficulties, education difficulties

Axis V
Serious symptoms, or serious impairment in one of the following: social, occupational, or school functioning.

Grow Some Balls

Wanna complain about how stressful your job is? Pshh please! Take my job for a day and you're going to look like a pansy. 

I love my job, but it is extremely mentally and physically draining. This is no lie. I deal with irrational behaviors on a daily basis. Sometimes, I put so much time in effort into making a kid understand their irrational decisions and make their day turn around for the best then an hour later you're their worst enemy. I have been physically attacked, spit on, kicked, punched, hair pulled, bit, verbally attacked, witnessed suicide attempts, witnessed self abuse, exposure, etc... Then later on that night they want a hug or tucked in for bed. Or go weeks without talking to you even after you try.

Physically, when they become a threat to themselves, a peer or an adult we have to intervene generally resulting in a restraint. Our philosophy is to be as therapeutic as possible. Therefore we only use hands on restraints. This is where the physical work comes into play. Holding someone down who is engaging in harmful behaviors is quite tough. We are also required to remain neutral during any circumstance. There have been times where I have wanted to scream and cry or spit back in their face but cannot.

There are also many rules to follow, not only when being hands on, but in general. Client confidentiality, HIPPA laws, not exposing personal information about yourself, etc..

The job requires a lot of patience. A LOT OF PATIENCE! I can honestly say I feel like I fit the job very well. I have received multiple compliments from supervisors about my performance. I have an "unusual but therapeutic way of working with the kids". With this being said I am highly satisfied with myself. I have gained sooooo much knowledge from this job. Skills that will forever make myself a better person.

So, with this all being said, next time you want to complain about your job being "stressful"... remember other people can handle shit like this. So suck it up!!

I Am...

I am 24 years old.

I am a female.
I sleep too much.
I am a hopeless romantic.
I need caffeine.
I love cotton scents.
I want to learn about Buddhism.
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 pretty.
I find the mind fascinating.
I rely on medication.
I love the color aqua and black.
I have bad allergies.
I wish I had enough intelligence to work in the science field.
I am always smiling even when I am upset. 
I do not have a best friend.
I have become more girly.
I am pale.
I want more energy.
I have obsessive thoughts.
I am creative.
I am a deep thinker.
I over analyze situations.
I love water.
I am silly.
I like the blues.
I believe in aliens.
I like yoga.
I like to drink.
I like to laugh.
I fake laugh.
I am rarely happy and if I tell you you've helped.. appreciate it.
I want to be happy. 
I have mood swings.
I have severe anxiety.
I am tinted yellow.
I do not maintain relationships.
I am lonely.
I like indie.
I am funny.
I want to play the guitar.
I love my personality.
I want children.
I am innovative.
I love taking photos.
I am caring.
I love nature.
I like baking cupcakes.
I want my own garden.
I deal with severe depression.
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.
I like 90's music.
I love pets.
I want more willpower. 
I like to experiment.
I am an instigator. 
I love to make people happy.
I never finish things.
I like constructive criticism.
I want to move.
I like being a bum.
I like to snack.
I am easily distracted.
I have a learning disorder.
I am above average in other learning areas. 
I want to be an art teacher.
I am in debt.
I am paranoid.
I want to start fresh.
I like cold showers.
I get jealous.
I am clumsy.
I love decorating.
I love family.
I love bright neon colors.
I like to cook.
I am mental.
I always have my toenails painted.
I only use black, gray or purple polish.
I can sing on tune.
I have a terrible singing voice.
I am a procrastinator.
I am trustworthy.
I am not afraid to be outgoing.
I want to learn more about outer space.
I am calm.
I am crazy.
I want to get married.
I am real.
I believe in karma.
I like tattoos.
I become easily unmotivated.
I have fast processing speed.
I have patience.
I am compassionate.
I like feeling wanted.
I am a visual learner.
I am not book smart.
I hate the color brown.
I hate pastel colors.
I constantly misplace things. 
I am finding myself.