“The Network” First Quarter 2012

Once again fantastic stuff coming out of the Narcolepsy Networks newsletter “The Network”!

Great to see all the wonderful things that happened during National Sleep Awareness Week this year! Now being in the bigger city since my recent move, the idea of a Wake Up Narcolepsy: Sleep Walk Savannah is very appealing! I will have to talk with my buddies Julie Flygare, Sarah DiDavide, and Ming Lai to see how to organize something like that… hmmm…. sleepwalk in the south, betcha we won’t have to wear coats over our cool T-Shirts! Heeheehee! (Awe! I’m just teasin guys!)

The amount of stuff NN has going this year is really amazing. Eveline Honig the Executive Director is in serious kick butt mode lately. It is amazing the work she does. I can’t even fathom that sort of constent energy. You would really have to seriously love your job and have that passion and drive to achieve what she has… and happily she does! LOL! Or we would all be lost without her!

Big thanks to James Bennett who allowed me to be part of his great article on The Power and Potential of Social Media. (Seriously, he did an amazing job of filtering through my babble! I was actually pretty tired during that convo, and tend to ramble on!)
It was pretty cool to read about the project that Board Member Ayelet Gneezy has been doing with her marketing students… clearly working with a class room full of brilliance!
And my fave part was seeing Charlie Bains Facebook group ZWN get a mention! I had brought it up as an example and now wish I had gone into greater detail. It was really amazing its original purpose and how it got its start, and though now mostly just for fun and common interest amoung pwn’s, if you think about it, the Center for Disease Control released its own Zombie Preparedness Guide in 2011 as a joke, later bringing up that zombie preparedness is really a good thing because it covers all sorts of other preparedness issues also, being national disasters, or other means of danger. Things as pwn we would have to think about diffrently also. For example: if fear is a cataplexy trigger, running from zombies is really gonna suck… but in the really real world running from a fire or tornado is going to suck equally as much. And if you been watching the news lately, or The Colbert Report, it is worth thinking… Charlie Bain could be on to Something….

Freaking Zombies!
Always getting me off track.
I flippin HATE ZOMBIES.

What was I talking about…?
Oh yeah, James! Thanks for the article!

Since moving I have been slacking in the social media dept myself, still getting settled. Eh. No worries you will all be seeing more of me soon!

So again, great stuff this issue, and NO SPOILERS! “The Network” is Members only! Hehehe, You didn’t think I was going to tell you all the good juicy bits did you?
If you want to see what I’m babbling on about, go to http://narcolepsynetwork.org and join! Great way to keep up with all of us Sleepy Peeps and see what excitement is happening in our world… and yeah, its pretty exciting!

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OMG She’s Coding!

For National Sleep Awareness Week, I Give You My 100th Post!

So there you are lying on the ground, unable to speak or move but can hear everything around you. If you have a very severe case, (as I do) Your breathing may have become shallow, and your heart may have slowed a bit, but you are not in danger. Being left alone you will get up in a few seconds to a few minutes. But once you hear some well-meaning, unsuspecting stranger try to intervene, your fears kick in, triggering even more cataplexy, and it can take longer and longer for you to get up. It’s like you have one attack after another, after another, after another…

Code Blue? Not always true!

“Coding” is not a word you want to hear during a Cataplexy Attack.
It pretty much ensures someone is going to call 911, and maybe even attempt to “revive” you, possibly break your ribs, bruise your organs or even cause an arrhythmia which could in fact kill you. All this while you are completely conscious, and completely vulnerable. Due to the American Heart Associations Hands Only CPR campaign, the general untrained public has practically been given a legal license to try to be superheroes. I know AHA means well but that literally terrifies me to no end.

AHA’s  website literally states: “It’s not normal to see an adult suddenly collapse, but if you do, call 911 and push hard and fast in the center of the chest. Don’t be afraid. Your actions can only help.”  This is NOT TRUE. Performing chest compressions in that manner on a heart healthy person is in fact dangerous. In their FAQ , AHA addresses the question of seriously injuring some one who is not in cardiac arrest by reiterating their point of view and suggesting that: Hands-Only CPR could still help by causing the person to respond (begin to move, breathe normally or speak). If that occurs, Hands-OnlyTM CPR can be stopped. Otherwise, chest compressions should continue until EMS providers arrive. For someone dealing with severe cataplexy that is not necessarily true. Especially if fear is a trigger for that person. No one want to be stuck motionless and unable to respond while their ribs are being broken. Which, according to AHA FAQ, happens at least 1/3 of the time.

Now, to be VERY clear, I am not saying attempting to save someones life is not important. But I truly believe if you see this happen to someone, If you see someone fall like this, you should always always always check for medical alerts first. More and more people with narcolepsy are carrying information on them in some manner to alert others to their condition. Please take half a second to look for wrist bands, necklaces, and ICE contacts in cellphones. Even if you do this, and THEN start chest compressions, you are still acting faster than the ambulance can get there.

Coding and More Coding:
Using QR codes to avoid mistaken blue codes is my new favorite thing.  Using QR codes for medical alert information is gaining in popularity as the technology for scanning them has become available to the general public via smart phones… If a person stopping to help you in an emergency has a smart phone they can access the information that you provide on your personal QR Code with a simple scan. These things have more room for more information making a description of Narcolepsy, Cataplexy and how to deal with it more complete. Even if you haven’t simply fallen down, and truly do need medical attention, they will need to know other basic information about you and that people many with Narcolepsy have issues with anesthesia. Something like that could truly save your life. You can also link to websites for more information. And since the person who is helping likely knows how to work their phone really well,  it will be quicker and easier for them than looking at a tag that says “narcolepsy” and then trying to Google it if they don’t know what it is. (Or worse saw it in a movie!) There are organizations and companies that provide services to develop these QR codes for you for a fee, but it is also really easy to do yourself if you are just planning to stick to the basics. Here is a list of free QR Code Generators that might work to suit your needs if you plan to go this route!


I am not trying to be an alarmist…

The post is based on my experiences,and triggers of my *version* of  Narcolepsy & Cataplexy, which happens to be very severe. (I am well aware that it is not this bad for many people, no need to bring that to my attention.) My fears of falling in public have driven me to solitude, and severe social anxiety. It’s difficult to explain to others that I am afraid of  being in public and people, because I fear they might injure me in some way, and have them  understand that with my condition and the lack of general public knowledge of this disorder, that is a very real possibility for me. (I have actually developed many fears as a result of my diagnosis. I will have to get into that some day…) My anxiety, though admittedly, perhaps extreme, are based on facts, logic and personal history. And they are very real.  (Side note: I have suffered physical abuse by EMT’s who were attempting to make me stop “faking it”, I have been taken advantage of simply because I could not move, seemingly unconscious and unable to defend myself, and I know many other people this has happened to as well. It’s the scary stuff, the taboo subjects of narcolepsy, that no one wants to address. But it is there. And it is real.)  Look around yourself in your world. How much do the people in your area know about narcolepsy and cataplexy? How safe are you from your would be saviors?

I implore you to do something about this. Wear your tags. Carry your wallet card. National Sleep Awareness Week is this week, March 4-11 2012. If you did not have time to organize an event to spread awareness on a large-scale, at least take steps to protect yourself from well-meaning bystanders. Personally drop off pamphlets from your doctor or organizations such Narcolepsy Network, Wake Up Narcolepsy or The National Sleep Foundation, to EMS, police and fire responders, close to your home and work locations. Take a few minutes to explain them the importance of them understanding and encourage them to ask questions. Nothing is scarier than hearing an EMT say: “Cataplexy? Whats that?” and then listen as they accuse you of faking a seizure, or juice up their defibrillator.

Kryptonite for Narcolepsy: How it Works

I recently received a message from a good friend of mine with Narcolepsy who has been going through a particularly hard time. She asked me to remind her that she is a strong and good person. And of course I will do that, but it really got me thinking about just how *strong* Narcoleptics are. How much of our strength is a direct result of the constant uphill battle with our disorder. Our very strength is derived from our debilitating weakness. Our only other option is to become severely restricted emotionally, and I have seen that. For a while, I have even done that. And that is no way to live. Even Superman, after repeated exposure developed a tolerance to Kryptonite.

Emotions Are Our Kryptonite

So many of our symptoms are triggered by the onset of emotion, not just cataplexy. I cant have a decent argument, even if I am winning, without needing to go lay down immediately afterward. (IF I even make it to a bed that is.) It is completely exhausting to even *FEEL* anymore.  Oh and of course if I get pushed to the point of cataplexy, which more often than not, I do, then its all over… I am defeated, pushed to the ground by the weight of my own desire to be and act human when it is clear Android would have been a more appropriate choice… Emotionless and unphased by the human condition. Able to stand strong in the face of all exhilaration, all anger,  all fear, surprise, laughter… even love. The list goes on… I cannot stand it.

Literally. I CAN NOT STAND. It wont let me.

Seriously, Lex... So not funny.

Kryptonite comes in many colors and can effect you in many ways. Some forms or colors of K and their subsequent effects are very much like symptoms of Narcolepsy making it easy to identify with.

The Green K’s ability to bring Superman down to his knees in an unavoidable and often painful collapse.  Much like exaustion.

Red K pretty much does the same thing but is usually only temporary, similar to cataplexy. Red K also has the effect of paralysis, and hallucination, which definitely will ring a bell!

Black K can split a person into two different personalities, (bipolar much?!)

And Silver K will cause paranoid delusions, hallucinations and hyperactivity. And which one of us hasn’t dealt with that at least once?

Happily not all the Kryptonite out there can be said to coincide with Narcolepsy, (Seriously like we really need to kill off plant life or become radioactive on top of all the other crap too right?) but enough of it does to really make you think. Dealing with so many diffrent kinds of kryptonite or emotions in our case coming at us on a daily basis, Its really amazing any of us are able to function at all. We are our own heroes everyday fighting this battle.

Symptoms of Narcolepsy: Never a boring moment.

All fun fascinating facts about Kryptonite, but lets just stick to the basic original Green K for the sake of argument. (And my dwindling energy to get this posted…) Even Superman eventually because of the constant bombardment of his enemies using Kryptonite against him, had to enlist Batman to help him out. So regardless  of how super you are, how strong, or how good, it is always going to be ok to ask your friends to help you fight your battles. Whether you are saving the world, or saving your sanity, it is much easier to do with people by your side who understand. We are our own heroes. We all know what it feels like to be the only Kryptonian on the planet…

You ARE a STRONG and GOOD person.

 

 

 

Never Enough Time

Usually, after  Narcolepsy Network Conference I am ready set go for the next project on my list. And there are many of them. Having Narcolepsy though means having to decide where and when you put your energy on a daily basis. There is so much that I do, and there are so many thing I am responsible for right now, (my sleepy version of *many* of course…) that some times I get overwhelmed. I have my blogs, which I am seriously behind on all of them, I have some other larger hush-hush projects happening, and I am really needing to get started on the new WAG website. I want that going before the end of the year.

So yeah, I been slacking. I got sick for  bit, had a death in the family, had to struggle with some drama that didnt sit well with me from Vegas,  (No I will not elaborate….) and its been difficult to be motivated through all this. And meanwhile, while I am already trying to keep my emotions and physical and mental health in check… I met a boy.  OMG and he is awesome. As awesome as the one I already have. That is impressive. (Also, No more elaboration needed…)

So hopefully, if I missed something or am running late or never on something, you can and will forgive me…. Maybe give me a *Gibbs* smack to the head and kick-start my focus again…. I am kind of all over the place right now. That happens from time to time….

And there is never enough time.

 

Marie Claire Opens Our Eyes to Narcolepsy

 

In the Health section of Marie Claire’s October 2011 edition, Sophia Banay Moura tells a story most of my blog readers can identify with greatly. Especially one reader in particular, Julie Flygare, because the story the author is portraying, is hers.

On pages 274 and 277 of the latest issue, Julie’s story is told marking how she came to realize her disorder, and the struggles she had during that time. It’s incredibly heartfelt , something I completely identified with and I highly recommend reading it as soon as you are able. This story may chronicle the evolution of her awareness about herself, but in my opinion the real “awareness” story does not end there.

 Since Julie’s diagnosis in 2007 she has vastly contributed to awareness of the public sort by speaking to scientific researchers,  Harvard medical students, and the general public.  She also speaks to narcolespy communities about advocacy. ( Including  the up coming Narcolepsy Network Annual Conference in Las Vegas, Nevada.  Note to self: Do Not Miss! ) An avid runner, Julie started a blog about running with narcolepsy in 2009 called REM Runner which since has become hugely popular and widely recommended by the PWN community. In April of the following year she raised $6,000 for narcolepsy research while participating in the Boston Marathon with Wake Up Narcolepsy and is training again to run next year. Also an incredible photographer she has a website of her work and a blog called District of Sculpture about monuments great and small in the DC area. Having just turned 28, Julie is writing a medical memoir about life with narcolepsy.

Wow that all sounds so incredibly plagiarized. Haha. Oh well, I tried. Moving on, let me tell ya what I really think…

Ms. Moura from Marie Claire could not have picked a better person to write about. Julie Flygare is kind of a Narcolepsy Rock Star, (An incredibly humble one at that!) and some one we should all pay attention to and look to when things seem impossible.  From reading her blog, I can tell you that she tends to not let little things like impossibilities get in her way. Her positive attitude and genuine writings about who she is and how she deals with her disorder, and well, everything else, will take her further than she could ever hope to run. She is easily one of the more inspirational people I have met on my own advocacy journey.

There are days, when I just wake up and think.. “Nope. DO NOT WANT.” and roll over and go try to back sleep. But in the back of my mind, I know somewhere a few states to the north of me, Julie has already gotten up and did everything I need to do three times over that day, and probably did it in heels while juggling chainsaws. haha! I realize how obnoxious that is but I never really think to clearly in the morning.  I don’t think any of us do.

The legends in our own minds, the goals of our lives, the person we all strive to be, is out there.  Julie has chased that dream much like the rest of us and seems to be successfully gaining on it.  ( I imagine it’s because she runs very fast. ) And if Julie can do this, then so can I and you, and you too, and that guy over there also.  You just have to want it bad enough. You just have to go for it. Mahatma Gandhi said: “Be the change you want to see in the world.” Julie is bravely carving that path, all we have to do is follow her example.

The very best part of this whole story on the story is this: I am not sure if Julie or the editors of Marie Claire are aware of this or not, but this issue came out right smack dab in the middle of National Invisable Chronic Illness Awareness Week. It could not have been better timing for Julie to share her story. because right now so  many people are paying attention! Since it was not mentioned, I suspect it was not planned, but I hope it will turn out to be an added bonus for both the magazine and especially for Julie. She has really earned this.

Want to be in the Julie Fan Club? As far as I know there isn’t one. And I find fan clubs creepy, so if there was I wouldn’t tell you. But never fear, you can follow her on her blog and on Twitter using the following links:

Julie Flygare

REM Runner Blog

@RemRunner on Twitter

 Contact and other information.

Congrats Julie!

We are all so happy for you!

 

Tag! You’re It!

Remember pre-diagnosis? How badly that sucked? Remember just simply NOT knowing what in the freaking yellow was wrong with you? And how frustrating that was? It’s just so nice to finally have answers, even if they are answers we don’t want to hear. 

Since you have been diagnosed with Narcolepsy. How many other people who have never heard of it till meeting you, have gone to the doctor and found they had it too? Has anything like this happened to you? If it has, was it just chance? Or were you in hardcore advocate mode?

This has happened to me. I can credit myself with 5 confirmed Diagnosis’s. (And no, not all family either.) There are two on the horizon also as soon as they go to the freaking doctor! I really can’t count them though as I am still in suspicion mode. But I mention them and I will explain why in a bit.

There are those who are so glad they have met me, because they are so happy to have answers and are able to get treatment and be semi functional again. And there are those who wish they didn’t know about me, because when they got their Diagnosis too, suddenly their entire lives changed and they resent me for it. Such is the stigma of Narcolepsy. Then there are those who know me, suspect they have it and refuse to go get tested because they see my struggles and what I go through and how people treat me, and they don’t want that for themselves. They are clinging desperately to normal. Geez and I can’t blame them.
(But now that I have seen Cataplexy and have it myself and know what it is, there is no hiding that from me! I see you punk! You know I am talking to you little brat!)

Anyway, there is no moral of the story today. Just something that was on my mind. How having a diagnosis is a blessing and a curse. And as much as I love advocating and bringing more awareness to people, the nasty game of tag we play sometimes, is disheartening.

No one ever really wins.

And none of us like to be the one who tagged you and said… “IT”.

GO FISH!!!

My Friend Irene, payed me the greatest compliment the other day. I originally posted this as a comment on the particular post she was talking about but decided to make my response to her an actual post itself.  There are people in my life, narcolepsy related and otherwise who I wish would stop with the pity party and get up and do something about their situations. Even if you fail, you are still trying. And trying is moving forward not treading water before you drown.  It doesn’t have to be big, doesn’t have to be a huge drastic change… start small and work your way forward. Start very very tiny, and work your way forward! But stop doing nothing.  Do anything to shake the negativity that is consuming you.

I HAVE BEEN THERE. And I was there for a very very long time. I am not talking out my rear here, I am telling you the truth. Your attitude about life, and your position in this “Mortal Coil” is what will make or break you in the end.

My response to Irene (who rocks in her own right by the way,) was this:

“Some days are just not easy for us. But to assume all days will be like that, is not giving ourselves a chance… You have to choose to recognize each moment for what it is. It’s the difference… in saying “Today sucks” and “Life sucks”. If a person decides life sucks, they have already sealed their own fate. Each day then doesn’t stand a chance.

My biggest pet peeve is some one who says they are simply playing the cards they have been dealt. Freaking Idiot. GO FISH!”

We tend to way to often focus on the negative around us. When all you see is black, the first thing you should try, is opening your eyes. LOOK for the happiness. Even if it is something small, like a cute little kitten, ar a brightly colored butterfly, There is nothing negative in those moments. Soon you will be open to more happy things by conditioning yourself to noticing them. I actually have a friend that I used to call and irritate so badly by asking what his “happy” of the day was. I finally got him a journal for his birthday and told him to write in it a new “happy” in every day. That will be a year ago next week and I suspect, If I were to sneak peek into that journal, It would be empty.
That makes me tremendously sad.

You have to want it bad enough to go and find it yourself because happiness is not going to fall in your lap. I know that various situations in life are hard. But that is NOT your life. It is a moment in time. A moment that will pass… if you let it.

I see so much potential in all of you. In everyone I meet practically. I see it where you cant see it even in yourselves. I only just wish that everyone even just once at least entertained the thought, that there could be something more, instead of hiding and crawling down deeper into the holes that you were placed in. ( Yes, the holes you were placed in, because I am well aware a lot of your issues were not brought upon yourself.)

Life is too short to waste time being miserable. Screw it and smile.

Edit:

While I was working on this piece I ran across two things tha makes me extremely happy. One was a new blog a friend started writing “In The Blink of an Eye” and one was a thread in a group about getting out there and moving forward, literally. That is exactly the kind of good we need to see happening. Peit and Julie, I hope that the two of you can use your stories to encourage others!