bellissima bonta

"the flower that blooms in adversity is the most rare and beautiful of them all" ~ Disney's Mulan

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12/12/13

Dear Diagnosis

In response to a fantastic advocate's Dear Diagnosis Blogathon:

Dear Kelly,

Today is your day!
Your mountain is waiting,
So... get on your way!

One year ago today, you were broken and empty. The numbness of your Pop-Pop's death wore off and you felt the pain. The day he died was hard, but you didn't know the blessing of the shock you were in until this day came around and that numbness left you with crippling emotional pain - in a physical body that just didn't seem to work anymore. It has been painfully clear that the universe has declared you one to master the art of the stages of grief. Among the losses, no longer being able to rely on your body has been a big one - one that has lingered and been a force of unknown struggle. 

The stage of denial that comes with any diagnosis has come and gone for you. Before you walk into the doctor's office, you know something is wrong with you and it is beyond your control. You know that even with days of living the 'perfect' healthy lifestyle, you still can't reach the levels of energy others appear to have - and you've forgotten what it feels like to feel that way anymore. You know that you constantly find yourself seeking something to stop the crashes that hit you hard and suddenly. There is no denying that your body has let you down and you are not superhuman to fix it yourself. 

There are still bouts of anger, but they dwindle each passing day. There is a purpose to this. There is a gift of clarity, strong will, and compassionate benevolence you receive from knowing that there is a name for why you feel so bad so often. There is a validation that you are not lazy, you are not being too negative, and you did not deserve this. The anger of not having a functioning body as you expected will transform into a force for good - a force that drives you to go further than you ever could challenge yourself, a force that drives you to help others who have felt as lost and scared - and alone - as you.

You are going to bargain still. As much as you think you've lost all of your pride, you will find some of it still peeking its head out, and you will try to do more on your own than you can. Breathe and enjoy your attempts. You have a stubborn and strong will that will inspire you and others. You will continue to fall. It will be what makes you beautiful. It will be what makes you humble. It will be what makes you succeed. 

The sadness is going to get better. You are learning how to let go of the disappointment you feel, the fears you have, and the loneliness of being misunderstood. There is hope. Your bouts of crashing throughout the day have been a blessing to weed out people that may have otherwise continued to be in your life. You deserve people that will always support you. You will find moments of frustration as you play the new game of finding the right medical management - but each time you will hear that voice in your head encourage you: Now you can see the light from that five year long tunnel. Now you can feel the sunshine's warmth. A day here and there of not enjoying that awakened feeling will still be much better than when you sat through it before today and wondered if you'd ever get to live again and if it is time to give up.

Acceptance is going to be your journey now. It will take time. You are still learning about how your body fits into the words in the textbook. You are still learning about your clinical history of Narcolepsy. You will still question if sleep apnea is really effecting you and you need to wear that awful mouth guard. (You will struggle accepting it is not as text book as the doc first thought). You will still need to work with the doctor to discover if you have cataplexy and need additional treatment - since you never took these mini and inconsistent weak-kneed falls seriously before and just grabbed an orange juice assuming your blood sugar has dropped. There is still a lot to learn - about your body, about the condition.

There are things about you that made you feel odd - your vivid dreams and how you mix them up with reality, your desire to nap (or eat or run in circles or anything) in order to feel less out of it, how you can't move most times you wake up, how others cannot simply wake you without drastic measure. You will find a greater understanding and acceptance of these things - and you won't feel like such an outcast to the world anymore. You will find humor in it as much as possible! (What else can you do but laugh?) It will take time to learn how to work with this new life. There is still a journey to go.

But today is YOUR day! Your mountain is waiting. And you will climb it. You will row with a team. You will dance again! You will run that half marathon with your Disney roommates. You will play with your dog. You will walk into a grocery store and not get lost! You will sing to the radio in a car you are driving (safely). You will meet new people that will love you as you are and let you love them. You are going to finish your thesis, take that registration exam, and be a fantastic dietitian that will help to nourish people beyond just their physical being. You will live - and in such a grateful way that you may have never had without this diagnosis.

You've grieved backwards with this condition. The diagnosis came much further down the road from when the grieving started. You have a name to put on this story. It is not going to be the main character of your story, just simply an explanation.

Keep doing what you've been doing - take care of yourself.

Eat healthy foods. Enjoy that you don't have to be a slave to eating on a regimented schedule. Enjoy that you can get away with more treats of Philly cheese steaks and Snickers bars - but keep perspective when those things still have a negative effect on you and cause you to fight stronger crashes.

Move - and love EVERY minute of it. Don't be scared to move anymore. You have a doctor in your corner who will help you. You don't have to be afraid that being too active will cause you to have more episodes at work and in public. Continue learning to forgive yourself when your body says rest and when you can't progress in your exercise goals like you used to. This is going to be the hardest task for the exercise physiologist you are. It is ok when there are times that you can teach but cannot do. Love yourself anyway.

Avoid those scary movies. While you may have gotten better at telling that dreamed-up zombie to bite someone else because you know zombies aren't real, it still scares you, it is still VERY real, and you still have no control over waking up from those dreams. Keep your entertainment to mostly light and silly. And enjoy the upcoming days when you don't need to dream to feel awake.

And as much as you want to continue shielding yourself from pain, tell your loved ones. Allow them to love you through this. Be humble. Apologize for human moments of impatience. Forgive those for not knowing how to support you. Love those who stood by you and continue to offer help. Most importantly, love and forgive yourself as you continue to find acceptance in not being superman. In your own way, you are quite the super hero - with the awesome super power ability to nap. Own it.

Finally, on this day, be thankful for all the hard days before this. Without the repeated lost loved ones, you may not have been forced to learn the lessons on how to healthfully process grief and avoid getting stuck in it. Without the sickness five years ago, you may have continued to deny your fog every two hours was abnormal and kept desperately chasing after the symptoms with crazy exercise habits and eating every two hours. Without the temperamental ex who loved loud scary movies (and loudly shouting at you), you may not have had the extreme emotions and your strange nervous goat reaction to it to report to the doctor. You will never want to relive those days, and you will never wish them on anyone. But now - finally - you have a reason to find gratitude in them.

And those days are going to help you be madly in love with every good day that you have. This medication may not be the answer. There will still be a lot of trial and error - and there is a chance that once you find something that works, your body will over time need a new intervention. It's ok. From now on, you're not alone - and you have a name to give these struggles. From now on, you can act on living the life you want in honor of Pop-Pop. He's with you today as you celebrate this new hope.

Congratulations on your awakening! Today is your day, so get on your way!

With love and hope,
Kelly ~ Diagnosed December 12th, 2013

11/20/13

Waiting..

Today is turning out to be one of those days. I was excited to wake up only an hour late (vs. the two hour delay that has been the pattern in the last couple weeks). I took a full shower this morning AND walked Belle!

Now I am desperately working hard to get things done before leaving for Thanksgiving vacation (planned this a year ago - turns out to be EXCELLENT timing to take off of work). And my mind will not work past 5-10 minute increments.

I'm fighting. Zoning out. Feeling nauseous. Concentrating long enough to accomplish a single task.

I'm losing.

And so now - in between the 5-10 minute moment of lucidity I have been experiencing today, I wait.

11/15/13

Day Sixteen

I am so mad at my friend right now.. I'm not mad at her, though. I'm mad because she's right - she's being a good friend. I'm mad because I don't want her to be right.

While on the speaker phone with her last night driving home (she's my Thursday check-in) - and talking and sounding fine, that little 'dip' starting creeping in. I was only six miles from home. I just wanted to go home. My eyes were burning and I couldn't read the road signs in front of me, but I felt sharp enough to push through six miles. I was chugging on the Mountain Dew the doc said to drink while driving. I could form sentences. I could follow the conversation. We're supposed to push through the last hard miles, right?

But I couldn't stay in my lane. And I almost hit a car - had they not laid on their horn and shook me enough to realize I was not where I was supposed to be. I pulled over and napped. And cried and cried when I finally finished those six miles thirty minutes later.

And then my friend told me the things I don't want to hear. This is what good friends do - they risk you getting mad at them if it means caring for and protecting you. And I didn't want to hear it. I don't want to admit and accept that the list of failed attempts keep growing, and there is nothing to do but wait for December 12th and continue losing my independence.

I have completed Day 16 of using this mouth guard. When I do wake up, it is easier to feel alert that first hour. The highs of the day are higher. The lows still hit - and they hit just as hard.

I am not safe to myself or others on the road. But how do I do the 27 miles to work and 27 miles home? Our public bus system is 2-3 hours each way. I have searched for car pool options. Avoiding highways takes me 1-1.5 hours each way now. I can move my work hours a bit more, but not much - if I do any more I will start to not be able to do my job (which is already difficult as is).

I am completely out of ideas.

And I'm mad.

And scared.

11/12/13

Walking Dead

Well it's finally caught up with me..

I avoid gory movies, shows, ect. It gives me nightmares. Since my dreams are so real, having a bad dream is a BAD feeling I can't shake all day. Imagine the most gory horror movie or torturous detail and now imagine it is real and not cameras and makeup - and you are five feet from it and watching it (and thinking quickly how to not become the next victim). Imagine it is all real. Even when the confusion of waking up and learning it was all inside my head clears, I still FEEL the realness of it all - the fear, the disgust, the uneasiness.

I was introduced to the The Walking Dead shortly after the second season finished. It was playing on tv as someone else was watching it - immediately I knew to get out of the room and go somewhere where I could not see or hear it.

But I made the grave mistake I do with scary shows: I lingered.. I watched for five minutes.

The show is freakin awesome. Not only that, but in order to minimize the scariness of a bad dream from movies/shows, it helps to get closure on the bad parts by watching the ending (and hoping it is a good one). So, if I do linger with the scary movie, I now have to watch the whole thing - and fight my bum off not to fall asleep during (which creates the worst of the worst kinds of dreams). So I watched season 1, then season 2.. THEN learned there was a season 3 and the new season hadn't started yet! I thought I was watching a series that was completed (I don't know why, but I thought it was an old series!).

I was screwed: zombie dreams.

The nightmares came pouring in! I was jumpy in real life for weeks - which also meant those 'sugar crashes' (which may actually be cataplexy episodes) came more frequently.

But I fell in love with that show!

The third season came out on Netflix. This season wasn't so bad - the zombies are now a side story. It is far less gory. So the dreams didn't plague me as they did the first two seasons. Score!

They're still there, though. And earlier this week, a group of zombies visited me at work. I stubbornly fight back with bad dreams. I know my whole day will be shaken - and I don't have time for that! So, if I see a zombie (something that doesn't exist in real life) in front of me, I know I'm dreaming and I start to make the rules of the universe. (Somehow I have not mastered this with the dinosaur dreams).

I looked the zombie in the eye (who looked very clown-like) and said, "I am dreaming; you are not going to scare me! Don't bite me mister!" Then I woke up - sort of. I wake up in the sense that I know I'm awake, but I can't move or do anything about it - been that way as long as I can remember, so I just wait.

But, remember, I'm at work taking my scheduled nap when this happened.

Next thing I know, a message goes off on the walky talky sitting next to me. And I was finally able to move, speak - be awake. And I screamed. Loud.

Then I cried.

I basically had the visceral response I wanted to have staring a hungry zombie in the eye.

Thank goodness I was working on a weekend and no one else was in the office. (Now that I think about the others times I've screamed awake, I wonder if I actually did make noise. So many times people have been around to hear it and report me not making a peep. Including the sleep study.)

These things happen. It will be damn funny once I know WHY and what to do about it! I am really ready to start making some quality jokes on the subject..

A friend of mine compared me to a nervous goat. That's a start.

11/10/13

The Get Psyched Mix Miss You Edition

To truly be psyched, one must confront and extract any non-psyched obstacles. Daily, I am filled with fear - over things others take for granted, things I once took for granted. I isolate myself feeling judged and minimized. Others isolate me when they can't understand my being out of it is something I am not choosing. These songs help me feel connected in times of disconnection from others. Whether they are lyrics that comfort me and are things I wish to hear from someone or words that remind me of the love I felt from Pop-Pop, these are songs that give me comfort and take me out of feeling lost.

For the times I feel alone and/or miss Pop-Pop..

When it's black,
Take a little time to hold yourself,
Take a little time to feel around,
Before it's gone,
You won't let go,
But you still keep on falling down,
If there's love just feel it,
If there's life we'll see it,
This is no time to be alone, alone, yeah,
If your sky is falling,
Just take my hand and hold it,
You don't have to be alone, alone, yeah,
And if you feel the fading of the light,
And you're too weak to carry on the fight,
And all your friends that you count on have disappeared,
I'll be here, not gone, forever, holding on, Oh,
I, wont let you go,
I Won't Let You Go ~ James Morrison

Nobody here knocking at my door
The sound of silence I can’t take anymore
Nobody ringing my telephone now
Oh how I miss such a beautiful sound
Nothing to hold but the memories and frames
Oh they remind me of the battle I face
And I don’t even know how I survive
I won’t make it down the road with one headlight
No I don’t even know if I’m alive
Oh, oh, oh without me now
This is what it feels like
This is What it Feels Like ~ Armin van Buuren

When life leaves you high and dry
I'll be at your door tonight
If you need help, if you need help.
Your hope dangling by a string
I'll share in your suffering
To make you well, to make you well.
You will never sleep alone.
I love you long after you're gone
When you fall like a statue
I'm gon' be there to catch you
Put you on your feet, you on your feet.
And if your well is empty
Not a thing will prevent me.
Tell me what you need, what do you need?
I surrender honestly.
You've always done the same for me.
You're my back bone.
You're my cornerstone.
You're my crutch when my legs stop moving.
You're my head start.
You're my rugged heart.
You're the pulse that I've always needed.
Like a drum, baby, don't stop beating.
Like a drum my heart never stops beating for you.
And long after you're gone, gone, gone.
I love you long after you're gone, gone, gone.
Gone, Gone, Gone ~ Phillip Phillips

Where did all the people go?
They got scared when the lights went low.
I'll get you through it nice and slow,
When the world's spinning out of control.
Afraid of what they might lose
Might get scraped or they might get bruised.
You could beg them, what's the use?
That's why it's called a moment of truth
I'll get it if you need it,
I'll search if you don't see it,
You're thirsty, I'll be rain,
You get hurt, I'll take your pain.
I know you don't believe it,
But I said it and I still mean it,
When you heard what I told you,
When you get worried I'll be your soldier.
Soldier ~ Gavin DeGraw

I need a saving grace
A hiding place
I don't have forever or time to waste
I wanna shake this winter coat off my sleeve
Dust off a record and just be free
When you're young
You can fly
But we trip on clouds 'cause we get too high
We grow up
And then it's gone
Oh God only knows what we'll become
So don't let me be, let me be, let me be lonely tonight
While we're young and alive
Take the keys to my car and the keys to my heart and just drive
Oh don't let me, let me be lonely
Don't Let Me Be Lonely ~ The Band Perry

I'll be there someday 
I can go the distance 
I will find my way 
If I can be strong 
I know every mile 
Will be worth my while 
When I go the distance 
I'll be right where I belong 
Down an unknown road 
To embrace my fate 
Though that road may wander 
It will lead me to you 
And a thousand years 
Would be worth the wait 
It might take a lifetime 
But somehow I'll see it through 
And I won't look back 
I can go the distance 
And I'll stay on track 
No I won't accept defeat 
It's an uphill slope 
But I won't lose hope 
Till I go the distance 
And my journey is complete 
Go the Distance ~ Hercules
schreibol-some-more Pop-Pop ;)

11/9/13

The Get Psyched Mix


Article 122:
If you're having trouble getting psyched, you can always make yourself a "Get Psyched" mix.
A proper "Get Psyched" mix is always evolving. In my quest to find understanding in my reality feeling more dream-like than my dreams, I have been drawn to songs with lyrics that really pin point the confusion.
Now people think a good mix should rise and fall. But people are wrong. It should be all rise, baby! Now prepare yourselves for an audio journey to the white, hot center of adrenaline!
Barney Stinson, How I Met Your Mother
Since a hot center of adrenaline tends to turn me to a hot center of mush, my Get Psyched Mix doesn't necessarily go for the rises and falls - I feel that enough in my day! Instead, it is a song that has words that express what I'm feeling and a vocalist that matches the emotions behind it. After the catharsis of singing along, my 'Get Psyched' comes after - getting out the muck that hangs in there.

If you could soldier on
Headstrong into the storm
So tell me you’re strong, tell me you see
I need to hear it, can you promise me to
Keep your eyes open, my love
Keep Your Eyes Open ~ Needtobreathe

People look at me and they know
They can tell something is wrong
And I know that it's a wonderful world
But I can't feel it right now
Well I thought that I was doing well 
But I just want to cry now
Wonderful World ~ James Morrison

Feeling my way through the darkness
They tell me I'm too young to understand
Well life will pass me by if I don't open up my eyes
So wake me up when it's all over
When I'm wiser and I'm older
I tried carrying the weight of the world
But I only have two hands
Hope I get the chance to travel the world
But I don't have any plans
Wish that I could stay forever this young
Not afraid to close my eyes
Wake Me Up ~ Avicii

Lately I been, I been losing sleep
Dreaming about the things that we could be
Old, but I'm not that old
Young, but I'm not that bold
Hope is a four letter word
And I feel something so wrong
By doing the right thing
Everything that downs me makes me wanna fly
Everything that kills me makes me feel alive
Counting Stars ~ OneRepublic

When your dreams all fail
And the ones we hail
Are the worst of all
And the blood’s run stale
I wanna hide the truth
I wanna shelter you
But with the beast inside
There’s nowhere we can hide
Don’t get too close
It’s dark inside
Don't wanna let you down
But I am hell bound
Though this is all for you
Don't wanna hide the truth
When you feel my heat
Look into my eyes
It’s where my demons hide
They say it's what you make
I say it's up to fate
It's woven in my soul
I need to let you go
Your eyes, they shine so bright
I wanna save that light
I can't escape this now
Demons ~ Imagine Dragon

Yeah it's been a bumpy road
Rollercoasters high and low
You wanna give up 'cause it's dark
So let your heart sweetheart be your compass when you’re lost
And you should follow it wherever it may go
When it’s all said and done, you can walk instead of run
‘Cause no matter what, you’ll never be alone
Compass ~ Lady Antebellum

And I'm not sleeping now, the dark is too hard to beat
And I'm not keeping now the strength I need to push me
And so I tell myself that I'll be strong
And dreaming when they're gone
Lights ~ Ellie Goulding

All this feels strange and untrue
And I'm getting so tired and so old
The anger swells in my guts
I want so much to open your eyes
Get up, get out, get away
Tell me that you'll open your eyes
All this feels strange and untrue
Open Your Eyes ~ Snow Patrol

This one is not always a winner
This too may not pass.. but it's fun to pretend.
You know you can't keep lettin' it get you down
And you can't keep draggin' that dead weight around.
If there ain't all that much to lug around,
Better run like hell when you hit the ground.
When the morning comes.
Let it go, this too shall pass.
When the morning comes!
This Too Shall Pass ~ OK GO

11/8/13

Grief Bursts

What a strange time this is. I find myself having grief bursts.

Grief over your body is a hard one to understand.

So many people experience it - eventually as we age, we all do. But few of us acknowledge the real grief behind it. Sure, we joke about getting older - some even bond over complaining about it. Working in the health field, I hear an endless number of complaints for "aging" that can easily be remedied with a healthier lifestyle change.

This grieving is my body letting me down, my body causing me to fail at multiple attempts to do things that were once easy, my body failing me - in ways that others simply aging may never experience.

I miss me. It is so strange to have a reaction to something in your head that you can't act out (I can't remember the last time I skipped down a hall way just to be silly). I cannot actually SHOW my full personality feeling unwell as I do. I am trapped inside this slow and dopey body, and it has been so long that I have forgotten what some of those parts are. There is a disconnect.

But this month - this waiting period of limbo - is a new strange set of grief bursts.

I find myself having that moment of 'Oh noes! What if I don't 'pass the test' and it is not narcolepsy? Then I'll continue feeling this way longer - maybe forever?' I get sad thinking of the things coming up (holidays, Disney half marathons, businesses I want to start, a thesis I want to finish, Belle getting older) that I can't participate in if I stay this way.

Then I find myself completely connecting to "It HAS to be narcolepsy! This mouth guard isn't changing the dips and crashes and they are getting worse as the day goes on. I sound just like these other bloggers I read about." And then I find myself having a grief burst realizing that despite the relief I'd have to have a name for it, the validation that this was in fact beyond positively attituding my way above the 'laziness', and the treatment I would get to start, I will forever battle this condition.

I don't know that anyone is going to want to partner up with me - the partner I've had said I wasn't worth it because I was so lazy and 'prevented him from having the life he wanted'. Of course, he was mean to say those things, but he had a point - I held him back. And there was nothing I could do to make it better for him - I was doing my best already. I don't want to do that to anyone.

I highly doubt I can pull off being a single mother. Single mothers are tired and spent without a debilitating health condition. Belle gets cheated all the time because I have so little energy for her. I can't do that to another living thing.

And what about Plan B? My fall back if I couldn't have a family was go to medical school. New doctors work crazy 12-24hr shifts. They are tired and spent just working. They don't have a health condition that turns their brain off so that they can't do basic math in their head (or on paper). I can't responsibly care for a patient when I am struggling to do that as a dietitian.

Then I wonder if I'll get to become an independent dietitian provider. Can I finish my thesis? Or has this condition progressed to the point where I cannot do this level of critical thinking anymore?

If I can't be part of a family or live out a purpose of helping others, what is my purpose? I imagine being diagnosed with narcolepsy and taking those daytime stimulants and being awake again - ready and able to jump around Tigger-style like I used to. Is that realistic, though, or do I need to prepare myself to actual limitations I have to work around?

My grief bursts both go in directions of the unknown - and a person cannot simply turn it off. This wait is much longer than a month. The things I use to distract myself are not working as well.

I just want to close my eyes and jump ahead to the end of this. I want to know which way I have to grieve and let it happen - and be done with the muck of it.

This is a strange time indeed.