bellissima bonta

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


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"Life Changing"

For those who are prescribed xyrem and haven't started..

I started early May and have been consistently waking up - on my own.. before my alarm.. feeling rested and energized!

My daytime meds are decreasing (I've dropped one of the two completely).

I haven't been writing about my experiences,  partly because they were too personal and I was afraid of the information being used as a reason to deem me incompetent,  and partly because I was done acknowledging how abnormal I had become. Little things kept separating me from being able to keep up with others and others could not understand why I had to keep avoiding so many experiences as simple as laughing or having catch-up conversations.

I can laugh, get upset, be startled and no legs giving out on me or hiding from others while my arms and neck are extremely weak. I'm starting to not hold back experiencing my emotions. I still have the habit of bracing myself expecting the fall (which I never realized I did before!), but bracing myself hasn't been necessary - I have been feeling all of these things and standing tall!

There are side effects that I have to manage, but they are so far less severe than what I had to juggle on my own. My dog - who's been my helper and warned me when episodes were coming - has been sick for almost a year mostly because I haven't been able to care for her. Now I'm able to walk her and play with her so she can fight the sickness that's been bugging her.

I was so scared to start on this med. I didn't realize how badly dreams took over and were robbing me of my quality of life. Each person has a different experience. Note your symptoms and changes and work closely with your doctor. My experience has been as everyone says "life changing" - even with a four-month period of struggling with adjusting and side effects.

I am waking up from what feels like a seven year coma. It is so weird to be an adult and feel like I'm just starting out (but with the mess of seven years of adult life that has been forgotten while I slept through it!). Choosing to go on this medication has been well worth the journey. I have the opportunity to live again.


Little Odd Things

Medication vacations are wonderful. The vacation day feels like a waste. It's not a true vacation of relaxation. It's more like the old days of "blinking" and finding the sun is long gone and that blink turned out to be a few hours of sleep that hijacked my time.

But the vacation means the days after provide more clarity. I don't understand my medication - this drives me crazy! But it feels as if it stops working the longer I'm on it. I take two days off and it seems more potent.

Yet, eight months post diagnosis day and I'm still finding so many curves of learning.

I'm on call this weekend. Last time it was my turn, I continued my medication vacation days. Thankfully, it was a quiet weekend that did not require a lot of my attention.

But I assessed my state and thought if it were one of those dreaded weekends we all pray not to have of a cocktail of cascading Murphy's Law, I would not have been ready.

So on to another curve to learn - experiment #113: no medication vacation during my on-call weekend.

Preparing for the possibility of a resistant to Nuvigil body next week, I put in extra hours this week to keep up.

On the plus side, I had a TRUE day off today! I went GROCERY SHOPPING (all by myself). What a gift to go and not find myself three hours later wandering the aisles with trouble piecing together what exactly it is I'm doing!

And so came the thought: I might - just might - be able to pull off shopping for some clothes that fit me!

I have earned the name droopy drawers at work. My body has returned to its original form pre onset of super symptoms 5, almost 6, years ago. I have missed looking into the mirror and seeing ME. It is truly wonderful. Yet I have my pants - my professional work clothes - safety pinned together so they don't fall off.

Murphy's Law stopped by for a visit today. One computer glitch called for a quick pit stop to work. Ok. No problem. I can swing by for what will truly be a few minutes of a few buttons to push and hop over to the clothing shops.

Then The Law said: another computer glitch your way! A file lost and needing redoing. Argh. This delay in time presented the opportunity of another new change that would have likely been a bigger issue had I not been present - The Law worked in my favor, eh?

My 5-15min visit transformed to a three hour stent. It happens.

This is where the learning curve and my persistent denial meet, though. In my mind I'm still a superhero.

A "normal" person can still finish these errands - I sure can too, right?!? Ok, time won't permit that visit to the post office to collect the mail their holding because I've been too tired to empty my box, but I can surely go to that clothing store and find out what size belongs to my new body.


Sure I can!

But I sure am starting to feel foggy. It is day 6 post medication vacation of being on Nuvigil after all. I'm never as sharp as day 1. It sure is hard to concentrate on where that store is.

Oh.. it looks like I passed it ten miles ago..

Well here's another one. But it sure is hard to figure out where to park. I used to visit this mall. Why are these signs for parking not registering?

Oh look! A parking spot! Maybe I ought to rest for a minute. I don't want to find myself doing that dance of wandering aimlessly as if I am some transient experiencing the mind-altering high of escapism drugs. I don't want to find myself a few hours later experiencing the humiliation of realizing I just completed a round of automatic behavior - and now I have no idea where I am or how to find my car.

(Why don't I have a shopping buddy that can gracefully hold my hand and guide me without hurting my pride by letting on they are doing such a thing? I need this basic help apparently as I am in and out of these sleepy crashes?)

It took 90min to feel confident to either get out of the car to attempt finding pants I don't swim in - or resume driving home. There was a window. Kelly's rational brain says, "Go home. You've reached that point of dysfunction. These are the little things you just have to accept. You're not like everyone else anymore."

My rational brain is smart.

But like a stubborn child of idealism rebelling their wise parents, I don't want my rational friend to be right. So I'm sitting in this mall.

And another hour has past. I am sitting in quite a lovely private lounge this department store has. Waiting. Again.

It is taking quite a bit to type this experience of frustration right now. As I sit and wait because if anyone here even dares to ask if they can help me right now I just might burst into tears.. which may also follow with weak knees and gently falling into things.

And despite my Rational Kelly Brain knowing I probably will receive compassion even if in the form of non-understanding confusion, I am still battling that damn piece of pride and dignity I have left. I hate that look of compassionate confusion as much as the worst imagined mean response possible.

This is a simple task of trying on a damn pair of pants and saying, "Yes, this flatters my bum; I will take it." It is just a little thing.

Yet I am still attempting this little thing two and a half hours later.

I should have conceded and gone home once Murphy's Law came to visit earlier. I still have tomorrow.

I'm sick of tomorrow. Tomorrow turns into months later of missed accomplishments. I just want a win. I want to walk out of this with pants!

It is taking me so long to get it together to event go beyond an attempt that at this point I feel the medication entering the stage of wearing off as bedtime is approaching. This is the time no more driving should happen (I still am miles from home).

There is no more getting better today. The waves of alert mkments will become dimmet and more erratic.

I want to accomplosh something damn it. Even this nlnir liye detaik. I want to do want mlrmal pwoele get to do. I kust want a mlment



Pinterest has been a coping mechanism for me. In the last few months, I had fallen off from going on. I usually only find myself sorting through pictures when I'm not feeling well and in that 'waiting' period..

  • Waiting for the fog to lift
  • Waiting to feel well enough that it no longer distracts me
  • Waiting to feel well enough that I am confident in the quality of work I'm doing
  • Waiting to be sure whatever it is I am doing is not an actual memory I'm dreaming up (literally)
As life goes, there have been small changes around me in the last couple months, and Pinterest sadly joined the ranks of all other social media:
It suddenly reminded me of how alone I felt.
It used to do the opposite - there were no pictures of others spending time together, remnants of conversations and inside jokes of which I was on the outside.. just a collection of dreams and hopes - and humor. I think with these small changes around me, I have been losing hope.

In waiting this morning - to wake up, to make sure I didn't dream about taking my meds like I did yesterday morning and cause a delay in the day, I found myself there again. 

Hope has not really returned, unfortunately. I am still battling a dark place of questioning what it is I am fighting towards anymore. But the humor was there. My mind is just much when in the mode of sleepy bliss. What else can you do but laugh?

I am sorting through a search for "Narcolepsy Humor" - there are some things out there that really make me laugh! And unlike a couple weeks ago in Target, I don't have to worry about falling over while chuckling at something in my bed. Describing the sudden switch to what can only be comparable to the college party days of learning what one drink too many felt like as your body started to work against you, my favorite is still describing a sleep attack as the Nap Ninja who won.

Narcolepsy- a condition in which one is randomly attacked by Nap Ninjas. Yeah....its pretty awesome.

Yet, this morning, I am getting more search ideas as I leaf through: 
  1. Someone pinned one of my grief-related pin after my grandfather died, I should look up GriefShare and see if they have stuff
  2. Someone pinned one of my runDisney Princess Half Marathon pins, I am doing the Glass Slipper Challenge this year! I should look that up!
Tto remind myself to search these two items, in my mind, I get repeating: 
GriefShare, Glass Slipper

What did I end up with when Pinterest leafing and intermittent napping was done as I'm waiting to feel the effects of my Nuvigil and of my body cooperating with me this morning? 
Glass Share and Cataplexy Potato

I may be a 33 year young single adult who is battling a bad case of loneliness and isolation right now as my geriatric patients can relate to my boring lifestyle better than those 20-60 years of age who are still able to fight and win against those Nap Ninjas. 

But at least while I sit in my quiet home with my patient puppy, waiting for that semi-confidence to start walking around and juggle my waking clumsy drunk-like dance, I am fortunate to be able to enjoy my own company. 

I can play a mean game of Whisper Down the Alley all by myself. It's like watching Gollum have a little conversation with himself, but Gollum appears drunk and disoriented mixing up the mini napping dreams and reality in the fifteen minutes of this talk


The Seven Year Birthday

I turned 27 in 2008.

This was the last birthday I’ve really felt connected to. Present. Awake.

At any given moment I feel as if I am 60 years young – this is an improvement from feeling like I was in my 80’s just a few years back! Yet, when someone still asks how old I am, I still catch myself ready to answer (sincerely) with a number in the late 20’s.

The 30th birthday was the most disappointing. This is a big mile stone birthday everyone celebrates. I sat in a restaurant lucky enough to have two people by my side and pushing myself to stay awake for a third who said she’d come by after her job as a server was done. There was a giant cake. I think I remember a balloon. And a never-ending haze all around me as if I was walking through a dream.

Each birthday since that 27th has been one of limitations and not feeling well. I’ve never been able to celebrate it freely. After being diagnosed and starting treatment, I figured this birthday would be different.

And so the pity party starts.

I have been a roller coaster in the last few weeks of quick-onset dips and extreme sleepiness. Doctor visits are still endless – which is exactly how I will be starting my birthday today: at the doctor’s office. I wanted so badly to DO something for my birthday, but I still find myself having to cancel my plans if I miss a beat – that beat being eating exactly perfectly right at exactly the right time. 

There is no room for human error. 

Even if I do it perfectly, it is not a guarantee. 

And so my birthday weekend looks like every other: planning how to get enough energy to get my next meal.

My hopes have fallen. And it makes me so sad. In the back of my mind is the added hardship of knowing I am no longer in my late twenties and my birthday is surrounded by the reminder that my other peers are living the life of the family and mommie club that I expected to be in by now. Instead, I find myself having a major crash alone in my home and feeling reluctant to tell one of my best friends that I’ve fallen quite hard for because I don’t want him to worry and make decisions in his life that would sacrifice his dreams in order to care for me.

I hoped for different this year. And I’m majorly flirting with the big-time pity party in the absence of my birthday party. 

So, I’m wondering what positive I can bring to this. Can I take this next year to plan for a grand awakening birthday next year? Fully celebrate my 28th and live a full life?


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



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.


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.