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Tuesday, May 28, 2013

A little inspiration.

For those days when you're not feeling exactly like a super hero... I came across this from a friend on Facebook.

Monday, May 27, 2013

Happy Memorial Day 2013

There are no words to describe our gratitude to those who have served and given their lives, and to their loved ones who live to carry on their memory. God Bless America!

Monday, May 20, 2013

Supporting a PWN

If someone you know or love has narcolepsy, here are a few things to remember:

1)  Don't take their sleepiness personal! A PWN (person with narcolepsy) sometimes simply can't help it if they fall asleep- even mid conversation. Also, sometimes the lure of a nap is much more appealing than participating in an activity, for example going to the park, going shopping, or participating in a DIY project. Simply put, the idea of a nap for a narcoleptic is quite intoxicating while the idea of an activity can just be exhausting.

2) Don't give a PWN a hard time about napping, or put a guilt trip on them. Trust me, we are hard enough on ourselves and the added guilt of loved ones is almost unbearable.

3) Don't think for a second that we value sleep more than loved ones- although we value sleep greatly when we get it, we would much rather be like the Energizer Bunny and have an abundant supply of energy to participate in endless adventures with loved ones.

4) Do be supportive and encouraging!

5) Do make an effort to be understanding on those "bad days" when nothing seems to get accomplished due to fatigue.

6) Do make an attempt to search out information regarding an element of narcolepsy such as: research, treatment, diagnosis, blogs, facebook pages, charity/awareness events etc. A slight bit of interest shown by those we love can truly warm our hearts ;)

7) Do be aware of the triggers that can cause cataplexy. If you're going to show a PWN something funny on your phone for example, make sure they're sitting! Randomly showing a funny picture to a PWN in a grocery store for instance, isn't the smartest move to make- be ready to catch them if they fall...

8) Don't use your friend's narcolepsy/cataplexy as a form of entertainment. It's not nice to laugh at someone else's expense- unless of course the PWN is a willing participant. Remember, it's okay to laugh with them, not at them.

9) Do be sensitive to the fact that health information is very private. Discussing another person's illness without their permission is a huge no-no. This includes disclosing information about what medications the PWN may be taking or have taken in the past.

10) Don't criticize or judge, but please be honest. 

11) Do listen. Sometimes all we need to do is vent our frustrations or recount events such as cataplexy attacks, automatic behaviors, and hypnogogic hallucinations. Having validation from a loved one can make the experience not so lonely.

Sunday, May 12, 2013

Happy Mother's Day 2013

Happy Mother's Day to all you mom's (or mum's) out there!

Whether you are a mom with narcolepsy or have a child with narcolepsy- or maybe your mom has narcolepsy- you are very dear to those you love! This is a day of reflection and also remembrance. Make sure to express your love and gratitude to the motherly figures in your life. Also, to my fellow MWN's (moms with narcolepsy)- You are the best mom ever, even though you may be the sleepiest mom ever ;)

So cheers to all you mama's, may your day be filled with love and blessings- and may your nap time be ever so refreshing!

Wednesday, May 8, 2013

The Need For Narcolepsy Awareness

Why, you may ask, is there a need to raise awareness regarding a disorder that involves sleepiness?
Well for starter's, narcolepsy is so much more than the comical portrayals of PWN in Hollywood movies.

Excessive daytime sleepiness (EDS), sounds pretty harmless and is a large component of narcolepsy. In reality, EDS means uncontrollable sleep attacks, brain fog, fatigue/exhaustion, forgetfulness, lack of motivation, falling asleep at stop lights or while driving, falling asleep when sitting, falling asleep in the middle of a conversation, falling asleep in school, etc. Basically it's being tired every single day of your life.

Sleep attacks feel like an impending doom approaching. It truly does feel like a ton of bricks has been placed on your brain and eyelids. Survival instinct is to go somewhere, anywhere so that you can close your eyes for just a minute. Sleep attacks can occur at any time, anywhere- no mercy.

Automatic behavior is another element of narcolepsy. It's basically when your brain goes to sleep but your body keeps performing the task you were participating in. For instance, I regularly had automatic behavior during my night shift as an RN. I would "sleep walk" to the supply room for supplies and blankets, I would "sleep chart" (charting nonsensical nursing notes in patient's chart), I changed diapers while asleep, and the straw that broke the camel's back was that I started an IV (successfully, and no harm done!) on a newborn. The horror that comes with "what if" scenarios is almost too much to bear.

Cataplexy occurs with most, but not all narcoleptics. It is the most fascinating aspect to narcolepsy in my opinion. Sudden loss of muscle tone when experiencing emotion ( all the while being completely conscious). Check out my other posts for more in depth information regarding cataplexy.

Even though my blog promotes alternative healing and lifestyle choices, prescription meds are probably the biggest aid to fellow PWN. Some of the meds prescribed for narcolepsy can cost more than $8000 per month. Access to health insurance isn't always possible for people and medicare/medicaid sometimes deny coverage of these meds. Denial of coverage is most likely due to the dangers of these highly controlled drugs, Xyrem for example. Despite its risks, Xyrem has changed many PWNs lives, and they simply wouldn't have functionality or a high quality of life without it.
Access to meds as well as proper diagnostic and medical care are crucial for narcolepsy patients. PWN are experiencing job loss, are having their kids taken away, and are suffering from depression due to difficulties with their medical treatment.
Make an effort to increase awareness: "Like" a Facebook page supporting narcolepsy such as "Narcolepsy Network", "Wake Up Narcolepsy", or "Narcolepsy Naturally-", check out an informative resource such as www.NarcolepsyNetwork.com     www.julieflygare.com     http://psychiatry.syanford.edu/narcolepsy
or follow a blog like this one ;)

It is imperative that awareness is spread so that thousands of people with narcolepsy no longer need to suffer in silence, or be perceived as lazy, and are no longer invisible!

Sunday, May 5, 2013

Wednesday, May 1, 2013

Facebook Page!

In the spirit of keeping up with technology (or trying to anyway), I've created a Facebook page called Narcolepsy Naturally-wellnessRN.  This page is intended to educate about healthy living as well as offer support and encouragement to the narcolepsy community.

Kind and helpful comments are always appreciated. Please like my page at www.facebook.com/narcolepsynaturally


Spirituality and Hypnogogic Hallucinations

Spirituality plays a role in narcolepsy, whether you believe in God or not. Why are demons and dark shadow figures almost always the theme with hypnogogic hallucinations? It's as if narcoleptics, when traveling between sleep states, are in fact lifting the veil of what surrounds us. It sounds sort of sci-fi, I know it's difficult to make sense of.

My dear friend, and one of the first people that I had talked about narcolepsy with, made a startling observation/remark to me. I was telling her about hypnogogic hallucinations (HH) and she stated simply, "maybe people with narcolepsy are seeing what we can't see normally, like a different dimension". At the time I really didn't think anything of it.  But the more I hear from fellow PWN's, the more it seems to be so much more than nightmares.

I don't personally suffer from HH currently, for that I am thankful. Of course I experience occasional nightmares and troubling dreams, but so does everyone. I guess what I'm trying to grasp, is why are HH so dark and scary? I have yet to hear about a HH that involved lollipops and rainbows. When PWN's address the topic of hypnogogic hallucinations, it is always with dread and involves darkness. It is indeed a curious phenomenon, for which there are no definitive answers. I'm going to ask my pastor for some spiritual counsel on this matter, as I think he may find it to be an interesting topic.

"Ye are of God, little children, and have overcome them: because greater is he that is in you, than he that is in the world." 1 John 4:4 (KJV)