Never Forget - September 11, 2001

After writing and sharing this as a Facebook post, I realized I should have posted it on blogger as well.

So, here it is!

At the 9/11 museum printed in large, bold print, a quote that read something like this:

"Hi Mom. It's me. I'm sure you heard the news. I just wanted to let you know that everything is okay. The plane hit the north tower. I am in the south tower. They said we don't have to be alarmed and everything is under control. I will call you after work. Love you. Bye"

At the same time that voicemail was left on a mother's phone, national security learned that another plane had been hijacked. Minutes later, the south tower was hit, and ultimately, was the first to crumble to the ground.

With tears filling my eyes, I listened to a voicemail from a passenger on Flight 175. A husband calling to tell his wife the horrifying news. After explaining the ultimate fate that laid in front of him, he thanked his wife for all of their great times, confessed his undying love for her, and said: "I hope you are able to accomplish everything we always dreamed of in life. I will see you when you get here. I love you."

On September 11, 2001, at fourteen years old, I - along with most of you - witnessed murder, pure hatred, evil, and war for the first time in my life. I sat in a state of confusion, fear, panic, and heartache as I watched the morning events happen right in front of my eyes.

Last month, Matt and I visited Ground Zero and the 9/11 Memorial and Museum in New York City. There, we were able to put faces to hundreds of the thousands lives lost on that tragic day. We heard their stories. Listened to their last words. Stared at their leftover belongings.

And, by no surprise, the feelings from fourteen years ago - confusion, fear, panic, and heartache - quickly surrounded me as I stood exactly where thousands of lives were so suddenly taken.
And as weird as it may sound, I am thankful to have been reminded of the raw horror, terror, and chaos that took place on that dreadful morning. It was as though I was taken back to that exact moment.

I think, over time, as a coping mechanism, we forget the initial "shock" or "sting" of such a traumatic event. But on the anniversary of this horrific, historical day, it is essential to remember those feelings - because those are the exact feelings thousands of people felt in the last moments of their lives.

“She had a business suit on. Her hair was all askew. This woman stood there for what seemed like minutes and then she held down her skirt and just stepped off the ledge. I thought, how human, how modest, to hold down her skirt before she jumped."

On this day, fourteen years ago, 2,977 lives were lost.

How many more "last voice mails" were left on that tragic morning? And what would you even begin to say if you were put in that same position?

In honor and memory of all of the victims, families, squads, ladders, engines, rescue groups, and volunteers from 9/11 - in addition to all those who have served and protected our country - I am sending a million prayers to you today, and always.

"And as we were running down the stairs to live, they were running up the stairs to die."
‪

#‎neverforget‬ ‪#‎remember911‬

Diagnosis = a rare, incurable disease (Zzzzzzzz)

"Nearly everybody has experienced those days where you didn't get hardly any sleep the night before (or maybe even a few nights in a row). You're groggy all day, have trouble focusing, your mind drifts as you try to perform mundane tasks, and you may even feel a little more irritable than normal. However, with just one night of good rest, you're back to your normal, focused, alert self in no time.

Now try and imagine what it must be like to live in a state of perpetual drowsiness, chronically plagued with sleepiness. To make matters worse, imagine that you actually sleep just as much, if not more, than the necessary amount, and take frequent naps on top of that. Imagine living a life where you sleep as much as you can, but never get that rested, recharged feeling that sleep is supposed to give you. This is what it's like for those suffering from the rare disorder known as idiopathic hypersomnia."

Two cups of coffee are always better than one.

Today, I had my sleep study consultation.

Wait, let me rewind. About a thousand posts ago (sometime last year) - I mentioned that my doctor recommended I get a sleep study done due to my excessive sleepiness.

This has been an ongoing problem for as long as I can remember. In high school, my mom had a hell of a time waking me up in the mornings. At that point, she and I assumed that it was just... laziness. I was a teenager, and I liked to sleep in. And as funny as it sounds, I'm serious when I say: she would need to use a blow horn (yes, you read that correctly) or pour water on me to just wake me up.

As I got older, nothing improved. Sometimes I'd sleep 18+ hours a day and wake up feeling exhausted. I always ran late - or often times - just skipped classes to sleep.

As time went by, we thought it was depression or anxiety - but even after being medicated for both, I'd still be just as tired.

At some point last year, I sat down and spoke with my doctor. She asked a few questions (what time do you go to sleep, how much caffeine do you drink, how many hours do you sleep on average, do you take naps, etc.) She referred me to Wisconsin Sleep Institute to get a sleep study and suggested that I could just possibly be one of those few people who needed around ten hours of sleep each night. Time went on: I forgot to schedule a sleep study.

Every morning, Matt would try to wake me up multiple times (over an hour and a half time span) -  and would eventually and understandably get frustrated. After yelling, "we have to leave for work in five minutes!"- I'd finally roll out of bed, brush my teeth, brush my hair, get in the car, and go.

On an average night, I will fall asleep on the couch around 9pm. By the time Matt is ready to go to sleep (11pm), he will gently shake my shoulder and say, "Jaclyn, it's time to go to bed," and I will carry on a full fledged conversation with him promising that I'm on my way.

But what really happens (from my point of view) is: I lay down while watching TV at night then wake up the following morning to Matt screaming that we have to leave for work.

9pm-7:15am ------- At least ten hours of sleep each night. I'd wake up feeling exhausted, groggy, confused, frustrated, and terrible for leaving all the morning responsibilities on Matt. On weekends, I'll doze off during the day, sleep for five hours - and wake up feeling just as exhausted.

This ongoing issue gradually caused issues in our marriage. Matt would become frustrated from always running late (which, anyone would), and I felt misunderstood, unproductive, useless, and just defeated.

In the beginning of the summer, I had a routine check up with my doctor. In tears, I explained to her that my sleep was seriously interfering with my personal and work life. I had zero control of waking up in the mornings and I was always, always, always tired. I didn't want my husband, parents, friends, or work to think I was just lazy or making excuses, and I had no idea what it felt like to be energized after a night's sleep.

She referred me (again) to the sleep institute and the first opening they had was three months out (today). In the meantime, Dr Quinn prescribed me Ritalin. A medicine which is usually used to treat people with ADHD. It is a stimulant and helps people stay awake and alert. Because of this, it is also prescribed to people with narcolepsy.

For the first month or so that we experimented with it, I started from 10mg a day and ended at 40mg a day. In a nutshell, it didn't help. I could take one dose at 4pm and still be asleep by 6pm.

As time progressed, my symptoms got progressively worse. I'd wake up feeling dizzy, with blurry vision. disorientations, hallucinations, and even suffered from sleep paralysis: "a phenomenon in which a person, either during falling asleep or awakening , temporarily experiences an inability to move, speak, or react. It is a transitional state between wakefulness and sleep, characterized by muscle atonia (muscle weakness). It is often accompanied by terrifying hallucinations (such as an intruder in the room) to which one is unable to react due to paralysis, and physical experiences (such as strong current running through the upper body)."

As my first month of ritalin came to end, I spoke with Dr. Quinn and told her it wasn't helping me. At one point I said, "I don't think I'll ever feel normal." She tried prescribing me Provigil (which is a narcoleptic medicine), but - of course - my insurance company wouldn't cover it because I hadn't officially been diagnosed with a sleeping disorder. 

After receiving the "no" from my health insurance, Dr. Quinn switched me from Ritalin to Adderall - a similar drug to ritalin, but with a higher dose and extended release (which will last 24 hours). The medicine has done a marvelous job keeping me awake, so much that a handful of nights-- I haven't slept at all. At one point, I went on a 40 hour stretch of no sleep.

YOU SHOULD SEE THE DARK CIRCLES UNDER MY EYES!

Today was my sleep consultation:

I shared all of the above with the sleep doctor and went through a million other details. He told me that he DIDN'T think I had narcolepsy, but it's "cousin": Idiopathic Hypersomnia

To help you all understand better, I've used the main points from wonderful Wikipedia

• Idiopathic hypersomnia is a disease, thought to be a neurological disorder, which is characterized primarily by severe excessive daytime sleepiness^. It has historically been rarely diagnosed and is often very difficult to diagnose at an early stage; it is usually a lifelong chronic disease, which is often debilitating.  
• Currently, there is no cure, there are no FDA-approved treatments, and research funding for its study is scarce.
• Those who suffer have recurring episodes of excessive daytime sleepiness. These occur in spite of "adequate, or more typically, extraordinary sleep amounts. Sleep is usually quite deep, with significant difficulty arousing from sleep, even with use of several alarm clocks. In fact, patients with IH often must develop elaborate rituals to wake, as alarm clocks and even physical attempts by friends/family to wake them may fail. 
• Despite getting more hours of sleep than typically required by the human body, patients awake unrefreshed and may also suffer sleep inertia, known more descriptively in its severe form as sleep drunkenness (significant disorientation upon awakening). 
• Daytime naps are generally very long (up to several hours) and are also unrefreshing, as opposed to the short refreshing naps associated with narcolepsy. . 
• Although there are several FDA-approved medications for use in narcolepsy, there are no FDA-approved medicines for idiopathic hypersomnia. Therefore, the wake-promoting medications used in narcolepsy are also commonly used off-label to help manage idiopathic hypersomnia. These treatments have not been studied to nearly the same extent, and some patients do not achieve adequate control of symptoms with these medications.
• Many patients are chronically tardy to work, school or social engagements and, over time, may lose the ability to function in family, social, occupational or other settings altogether.
• Idiopathic hypersomnia is a lifelong disorder whose symptoms typically begin in adolescence or young adulthood. It is initially progressive, but may stabilize, and its main consequences are professional and social.
• Idiopathic hypersomnia profoundly affects work, education, and quality of life. Patients are often too sleepy to work or attend school regularly, and they are predisposed "to develop serious performance decrements in multiple areas of function as well as to potentially life-threatening domestic, work-related and driving accidents. Furthermore, these risks are higher for idiopathic hypersomnia patients than for those with sleep apnea or severe insomnia. In fact, "the most severe cases of daytime somnolence are found in patients affected by narcolepsy or idiopathic hypersomnia. And idiopathic hypersomnia is often as, if not more, disabling than narcolepsy.
• Idiopathic hypersomnia has long been considered a rare disease, believed to be 10 times less frequent than narcolepsy. 
• Although the true prevalence of idiopathic hypersomnia is unknown, it is estimated at 1 in 25,000 people 
• Because idiopathic hypersomnia has been considered a rare disease, it has not received enough attention from authorities and researchers. Patients are rare, researchers and scientists involved in the field are few and research findings are therefore scarce.
• Because of this low awareness, patients with idiopathic hypersomnia "often need significant support because they are at risk of being misunderstood as being incompetent or slothful. Therefore, education of relatives, friends, and colleagues helps the patient to function much better with this incurable disease.
• Furthermore, because idiopathic hypersomnia may lead to marriage breakdown, extensive counseling for the patient's partners, educating them about the symptomatology and treatment options, must be part of a comprehensive management plan... Education of relatives, friends, and colleagues helps the patient to function much better with this incurable disease."
• Unlike narcepsy, which has a known cause, the cause of idiopathic hypersomnia has been largely unknown, hence its name.   

LUCKY ME! On October 21st, I get to have a sleep over at Wisconsin Sleep Institute so they can monitor my sleeping while I'm connected to a million different sensor thingys. Then, even better! I get to stay the WHOLE day after (on October 22) so they can monitor how many times I doze off in a quiet, dark room.

Doesn't that sound like so much fun????

Following all that FUN-NESS, they will be able prescribe me on meds for narcolepsy which HOPEFULLY my health insurance will approve. These include stronger stimulants and meds that will help with wakefulness in the mornings, so poor Matt won't have to set off the fire alarm in order to get me out of bed (and really, I'd probably sleep through the fire alarm #NOJOKE).

For now, we are still "mixing the perfect cocktail" with Adderall - figuring out the perfect dose and the right time to take it, so I'm awake and alert throughout the day - but not throughout the entire night as well.

Oh, and crossing our fingers for vitamins to help wakefulness in the morning - But I was warned: the chances are slim.

I don't know if I'm dreading October 21 because of the boring two-day long sleep study - or excited because we'll finally have an official diagnosis and plan for treatment.

I slept all day after my appointment. 

Also, aren't the dogs are SO SWEET for allowing me an entire cushion and a half to stretch out??

This Blog

Because this is a RARE sight:

 As I've mentioned a few times before, there are a handful of blogs that I read on a normal basis. I started reading these to get an "insider perspective" on adoption. But what happened is that over time I just grew accustomed to reading about these families and continued doing so on a normal basis. (Case in point: ALL of the families have successfully adopted, and I still go back for weekly updates).

I consider their posts like a "weekly newspaper". A version of the news. Their news. Their adorable, charming family life news - that they just so happen to share with the world. I will sip my coffee in the morning, or wine at night, and check in on these families that I've grown to know and love. It's truly one of my most favorite things - as in, I'd rather read blogs than watch TV.

I'm so obsessed with my "weekly-- sometimes --- daily blog checks" that I, in fact, sometimes get far too impatient and wonder why "so and so" hasn't posted in the past few days.  Then, I repeatedly check back over and over until YAY!!! A new post!!!

In the beginning of 2013, I read the book: A Year in High Heels. A super, fun book for women who love heels (duh) that inspires them to try a new thing every couple of weeks throughout the calendar year. Well low and behold, one of the inserts from February recommended starting a personal blog.

And that's when it happened.

March 5, 2013 - My first post.

I had no idea what I was doing, and really didn't have anything to say. Sparknotes version? I'm starting this blog to keep everyone up to date on the happenings of The Fennels- a very newly married couple (17 days to be exact). 

I could not have imagined the importance or influence my blog would eventually play in life. As time went on, I gained more readers, and eventually, almost everyone who knew me also knew about my blog. It would come up in friendly conversation: I love your blog! I read it all the time. You're such a good writer and so funny! And people I barely knew, who were friends with Matt, my mom, etc., would mention it to me in passing at work, family events, social gatherings, and so on. The two week window when I changed the URL, removed all links on my FB, and just stopped writing: I received multiple messages asking: WHERE ARE YOUR POSTS? (Do you know how flattering that is? Honestly)

I've had friends tell me that my blog inspired them to start their own - and that is such a huge compliment! Because as a writer, (shocker), I firmly believe that writing is one of the best practices and therapies out there. Writing got me through my darkest times, and I have this blog, a journal, and a fifteen-chapter unpublished novel (from 8 years ago) sitting on a flash drive to prove it.

This blog turned a hobby into a profession. Someone at work saw my writing, recommended I go for an opening, and just like magic, I became a paid, professional writer. Over the past three years, this blog has turned me into a better writer and I'm constantly thinking of what I'll include in my next posts (See: saved notes icon on iPhone for future topics/ideas). And poor Matt has had to pose in so many pictures because "I want to blog about this." and he hates, truly - detests - posing for pictures.

By no means has this blog become known as one of the "Most Popular " in cyberspace - you know, the ones with advertising and a daily readership of like, eleventy billion views. Where people just simply write about their family or share a recipe, then before they know it, are getting paid big bucks for a two inch advertisement space on their webpage. Don't get me wrong. I think that would be AWESOME, but also, highly unlikely.

To date: this website has been viewed 30,046 times with 190 posts. Making the average readership of each post about 158. Some posts with a super high amount of views like Coming out from the darkness (785 reads) and some with a troubling amount like SnowBowl (47 reads - with at least ten of them being ME).

Also, I am 110% cray cray obsessed with checking the amount of reads, likes, and comments, and I take it far too personally when posts aren't getting a lot of activity. Just ask Matt. I will constantly hit refresh for updates, then sit and wonder WHY people aren't reading, commenting on, or liking my post. Stop judging. I know, I need a life.
 
There will be spurts where I'm rocking it and the average is around 200 reads, then there are times when I wonder: What in the hell did I do to offend them? Where did everyone go?! due to my average readership plummeting down to 40-50.

And the theme of this blog has not been consistent over the years. I mean, it's not like every single post focuses on one main subject - ie: marriage, kids, work, DIY projects, cooking, traveling, or even pets. Its been solely based on what has been going on in our lives, and my brain, at that point in time.

Sometimes I like that my blog is that way - a snapshot or memory of past times, but other days, I think I need to focus on one single subject. Vegan cooking? Yeah right! I'd lose 90% of you in a matter of seconds. Our pets? Even that may get old. Traveling? Not rich enough. DIY? Hell no. It would be the next pinterestfail.com. Adoption? That is not happening anytime soon, if at all (See: future post). So, what is the main subject then? Me???!

I mean, how narcissistic can I be??!?!!

Answer: Really, really narcissistic.

Confession: I love going back to read my previous posts. And I constantly review the most recent to make sure there aren't any mistakes - so really, those 30,000 views should probably be closer to like, 15,000. HA!

Bonus: This blog has become (like stated above  - near the title) "an online scrapbook of our beautiful little world". It is the perfect place to store our pictures and memories. And there are times when I write things -- not for you, my dear reader -- but for me (and just hope you like it). There are so many little things that I don't want to forget five years from now. Like the creepy piano man in New Orleans, or walking ~ten miles around Central Park, or how Pappy had a recent obsession with chasing fireflies in the summer of 2015.

I oftentimes question whether I should do more frequent posts (one every couple of days) or spread them out (one every couple of weeks). I worry that my frequent posts on FB become annoying - or if people are straight dumbfounded that I actually believe they would be interested in reading about my new pair of flats. But then, in blogging fashion, I come up with an idea and immediately want to share it.

#narcissist

The sad truth is if I don't post the link on FB, then I don't think any one, except Matt and I (because I force him to), would read it. And while I write this for fun and as a place to keep memories, I want YOU to like reading it, too.

Which is why I'm writing you...  I'm trying to better myself and this blog.


Should I focus on a specific topic? If so, what topic do you like reading the most on www.thefennels.com? Do you appreciate the posts on Facebook linking to my blog? Or do you just type in the URL and find the FB post a waste of space? Would you rather read a post every couple of days, or every couple of weeks? Are there any readers that are not friends with me on FB who read this blog on a normal basis? If so, how did you find it? Google? Blogspot? A tagged friend on FB?

Please, pretty please, with coffee and wine on top - let me know. Comment, message, whatevs!!

I want you to be like this crazy lady (cough, cough.... me):

"I'm so obsessed that I, in fact, get far too impatient and wonder why they haven't posted in the past few days.  Then, I repeatedly check back over and over until YAY!!! A new post!!!"

Dream big, right?

A couple writing updates before I scoot:

1) Since starting my job as a corporate communications writer, I've really struggled with writing at my desk during the 8-5 work day. Call it writers block, or procrastination. I'm most creative in the evenings, when everything else has slowed down. My brain is no longer running a million miles a minute, and I'm no longer thinking about laundry, appointments, groceries, what to make for dinner, or what bills are due when. It quiet. And I have a glass of wine in hand. I mean, really! you guys! It's 2:03 AM right meow.

Because of this, I will brainstorm throughout the work day and then complete my stories at home. I'm trying to work on this, and hopefully in time, I'll be able write while sitting in my cube at work. Although, I DO love the wine part at home.

Oh, and I talk to myself when I write, so that would probably be annoying to my cube neighbors.

2) I wrote a story about a remarkable fourteen year old boy who is dying of cancer about a week or so ago. His mom works at my company and has received an immense amount of support from the company, as a whole, and her coworkers. This boy, after learning his cancer was incurable, decided to enjoy his last few remaining months on Earth doing the things he loves most. Radiation and chemo could have potentially extended his life, but that would have kept him in a hospital bed without family or friends.

Instead, he has chosen to be needle and medicine free. He attended the senior high school prom, took the prom queen out on a date, met his favorite NFL football player, and spent countless hours on his four wheeler, swimming, hunting, and vacationing.

I was in tears when speaking to his mother about their story, courage, and strength - and I believe that I will remember him forever. He reminded me of such an important life lesson. Of what is most important: family, faith, and happiness. It was an honor to share his story, and it will likely be one of the most important pieces I'll ever write.

Two days ago, the CEO of American Family stopped me and said that it was one of the best articles he had ever read on our company website. WOWZERS.

 3) Still in the really early stages, but I am taking my passion to new passions! Tonight, I spoke with the President of Adopt Me! (where Pappy and Wally were adopted from), and I will be working on writing grant requests for their rescue! YAY! I am so happy to be a part of this wonderful group - they are doing BIG things over there. BTW, over 500 dogs were adopted in their first year. That is AMAZING!

4) My cherished journal. The one I started a week after our first visit to the Fertility Clinic. My heart and soul, and every uncensored, raw emotion I experienced throughout the treacherous first year of infertility:

 
It is now my hope to one day have it published. When battling infertility, you feel just so alone, and like the only person suffering through it. The reality is that there are millions of people who are experiencing the exact same things.

I want my journal to help them through their darkest times. Just like it did for me.

I will slowly be reading through it, editing, and making minor changes before submitting it to an agency.  I imagine it will take awhile. A long while. And chances are slim it will even be purchased by a publishing agency. Even so, it is a huge dream of mine, and I will at least try.


That's all for now, folks!! Don't forget to let me know how/what you prefer reading on this blog. If anything at all. ;)

Really, it's all just mumble jumble.