Learning

madcapmissadventures

From madcapmissadventures, I have learned I have to keep working at this anti-narcolepsy diet thing. If I slack off my diet (or exercise), my narcolepsy comes back with a vengeance. Thank you Gina for just being out there. We CAN beat narcolepsy!

gluten free + low carb = no narcolepsy

Dear Narcolepsy

Dear Narcolepsy,

My name is Christina, you may or may not remember me – we first met a long time ago. Well, I remember you quite well, and there are a few things I need to say.

First, I want to begin by saying that I don’t hate you, but there are some things we need to work out together.

When I was a kid, you wouldn’t let me play on the playground with the other kids very much. I could play some, but I would often have to sit on the sidelines

Sometimes, you make me question my sanity. For example, one time you made me dream that I had a sexual encounter with someone I shouldn’t have. It was a very very life-like dream and when I woke up I was very mad, hurt, angry, and upset! Finally, after a few days of questioning myself, I realized you made me dream up the whole thing! What a cruel thing that was to do!

You made me fat. Ugh. I ate less and less and gained more and more. And that made people think I was even more lazy than I really was. It takes me so much more work to keep me weight normal than other people. I didn’t know this was your doing until much later in life. I spent a long time beating myself up about it.

I almost failed out of school. Yes. That’s right. Failing grades. Sleeping in class. Teachers questioned if I would ever go to grad school. Some even laughed at the thought I would.

You turned me into a zombie. Enough said.

You made me look drunk. When I get too tired I act weird and loopy. Some people think I look publicly intoxicated sometimes.

Sometimes I can’t drive. I can’t drive at night because of you. This is extremely inconvenient for me.

You make me mean.Thanks to you, my boyfriend hates me in the morning. I’m cruel, grumpy, and tired after fighting off monsters all night.

I haven’t been to a New Year’s Celebration in 5 years. 12 am is way to late for my brain.

I can’t finish more than 1/2 a movie. Oh? There’s some kind of happy ending? I wouldn’t know because I fall asleep during the climax when the whole world is going to sh*t.

I can’t eat cakewithout falling into some kind of 3 day coma. I hate birthday’s now.

You make me afraid to have children. Afraid that one day I won’t be able to hold down a job. Finish school. Have a productive life. You make me afraid.

All of these things aside, my dear friend narcolepsy, there are a few things that I am grateful to you for.

You have made me become a better person. 

Because of you, I have been forced to change my diet. I changed my diet and became a healthier person. (Which, in part made you back the hell off).

Because of you, I became a runner.

Because of you, I learned to treat people in a way that I would want to be treated. With understanding and compassion.. who knows how many people I meet have invisible illnesses?

Because of you I know the value of being awake. How precious simple things are that are continuously being taken for granted by others.

Because of you, I became a scientist. You made me need to know the answers to life’s funny questions.

Because of you, I’m the hardest f*ing worker anyone will ever meet.

You taught me to keep my head held high in the face of extreme physical limitation.

You taught me to have faith.

You taught me the value of executing a task while you can. Idleness is for ninnies.

So, you suck narcolepsy. But, also, thank you.

Christina

Titles

A book about the narcoleptic journey? The autoimmune journey?

What a dream, what a dream.

 

Working titles for books:

 

No More Narcolepsy

A book about how a gluten free diet helped me reclaim my life and have days where I no longer suffered from narcolepsy.

Sleepy Scientist

A how-to guide on how to get the hell through higher education with a chronic sleep disorder.

 

Gluten Free Narcolepsy

A how-to guide on how to what to eat and what not to eat as a narcoleptic (or someone with an autoimmune disease).

Is that an alien in my room?

A picture-based book for children explaining hypnogogic hallucinations, sleep paralysis and other facets of narcolepsy to children suffering from the disease.

Your kid is not lazy.

I have talked to too many parents of children with narcolepsy that still insist their children lack motivation. Actually, it’s much the opposite…. you will never understand the kind of raw willpower it takes for a narcoleptic kid (or teenager, or adult) to get out of bed. This book will be a how-to-not-treat-your-kid-like-they-are-lazy guide. We do have motivation (a lot of it, in fact); this book will help you learn to recognize it.

 

“If I could do anything as a Health Activist…” WEGO Day 5

If I could to anything as a health activist, I would start a rehabilitation facility for narcoleptics; lets call it the Sleepy Center. Here’s a few things we would feature:

Sleep specialists that know about narcolepsy. Heather has alluded to the recent survey that was taken about sleep specialist awareness of narcolepsy. At the Sleepy Center, we would only have doctors that know about us. 

Narcolepsy education. Learn what narcolepsy is, what it isn’t; and what hurts and helps your brain. Classes in basic neuroscience and autoimmunity for those more advanced.

School for narcoleptic kids that doesn’t start at 7 am. Actually, it doesn’t even start at noon. I’m thinking around 3 pm or so. Flexible due dates. Truancy not an issue. Learn at your own pace and in formats that are especially in tune with your individual needs (like learning while moving instead of sitting in a quiet room at a desk). Also, getting made fun of for sleeping on the bus won’t be a problem since we won’t have busses; we will also not tolerate people being made fun of for falling asleep.

100% gluten free and sugar free (low-carb) cafeteria. We’ll take care of your food so you don’t have to worry about it. In the mean time, we’ll also have classes to help you learn quick & healthy meal prep and how to do gluten free (or other allergen free) on your own time.

Allergists, nutritionists, and autoimmunologists to help identify any exogenous sources of inflammation that may be aggravating your narcolepsy. Eliminating as many of these as we can will help you recover more quickly.

A running track surrounding the building.We’ll also offer lighter indoor exercises (such as Yoga and water exercises) for those who just can’t get into running.

24 hour day care for non-narcoleptic children who are there with narcoleptic parents. That way, you can still be around your kids, but you can take the time necessary to focus on you for a while, while you learn tools to help you succeed in your effective parenting classes.

 

Effective parenting classes for narcoleptic parents of non-narcoleptic children. Parenting is hard work. Parenting is even harder with a chronic illness. The Sleepy Center’s effective parenting classes will teach you tricks from other narcoleptic parents on how to be extremely effective at parenting. Time savers and how to handle your kids when you’re tired (and grumpy).

Effective parenting classes for non-narcoleptic parents of narcoleptics. Your kid’s not just lazy. We’ll teach you how to parent a child with a chronic illness with compassion & how to help instead of harrass.

Family center where the whole family will come and learn about narcolepsy. All chronic illnesses are family illnesses.

Meditation/mindfulness based stress-reduction center. Learn how to handle yourself in a more compassionate way. You won’t always have control, and that’s ok.

Therapy. Therapy. and More Therapy. If you don’t like it, you’ll be rotated on different talk therapists until you find one you like. And then go to group therapy.

Art therapy. Paint your hypnagogic hallucinations. Unless you want to keep it, these paintings will be auctioned at an annual fundraiser to raise money for narcolepsy research.

Narcolepsy Care Page – WEGO Health Activist Writer’s Month Challenge Day 4

Narcolepsy Care Page

Newly diagnosed – now what? Below is a list of useful resources to help you self-advocate.

Educate Yourself

       Knowing about your disease is the first step in self-advocating. This includes knowing what it is, and (more importantly) what it isn’t. The Wikipedia page on Narcolepsy is one of the most comprehensive sources for information about narcolepsy. And, since it’s Wikipedia, it’s updated often with new developments.

Find other People

      Many narcoleptics have never met another narcoleptic. Meeting someone like you can be an important and emotional event. There are several patient support organizations that have been created for the purpose of outreach and education. The best of these for finding others and becoming involved in the narcolepsy community is the Narcolepsy Network. In addition to yearly conferences (highly recommended), they also have a plethora of resources for doctors and educators that can be useful in self-advocacy work you may do.

        Online communities (particularly Facebook groups) are another good way to connect with others.

Below are a few blogs of individuals with narcolepsy that are particularly inspiring when you’re feeling down:

REM runner : Author and narcolepsy spokesperson Julie Flygare is an influential and inspiring person.

The Madcap MissAdventures of a Narcoleptic: Gina tells her personal stories and struggles with narcolepsy, including her dietary intervention strategy.

Strides Against Narcolepsy: Heather the Runner blogs primarily about symptom management and other goings on in the community.

Dee Daud: Best known for his television appearances, Dee has a great Youtube channel with many videos relating to narcolepsy and narcolepsy awareness.

Facebook Pages:

Gluten Free PWN: a group for people who are using a gluten free diet to mitigate symptoms of Narcolepsy

North Florida Narco

PWN (Persons with Narcolepsy)

Narcolepsy Friends

Strides Against Narcolepsy

Wordless Wednesday: WEGO Health Activist Writer’s Month Challenge Day3

I painted this last year for a dear friend of mine who also has narcolepsy.

A few of my favorite things about the piece:

1) Black areas of the brain “dotted out” to demonstrate the areas of neurodegeneration seen in narcolepsy.
2) Hand and eyeball to demonstrate the visual hypnagogic hallucinations which are a specific feature of narcolepsy.
3) wave-like motions and sound waves above the reclining spine and brain reminiscent of the wave-like physical and auditory experiences in individuals experiencing hypnagogic hallucinations
4) Lilluptutian hallucinations (the little black men), a not-uncommon feature of hypnagogic hallucinations.. It is also significant that the dreams (i.e. little black men) invade the surrounding space and reside on the area where the chest would be of the person. A “Witch sitting on the chest” is also a common feature of hypnagogic hallucinations and sleep paralysis events.
5) A symbol for science in the upper right hand corner, as a reminder that our scientific efforts can shed light, hope and relief, on all neurodegenerative disorders, among them narcolepsy.
6) White speckles resembling migraine-related auras. These are seen in vascular and neurodegenerative dementia, in epilepsy, neurotoxicities, multiple sclerosis, among others, and may also be seen in narcolepsy on occasion.
 Here’s a close up of the piece. I’m a huge fan of 3D-ness.

 

5 things you should know about my condition and my activism.


Thing 1. Narcoleptics are not lazy. As soon as you hear the word “narcoleptic,” you should not be able to use the words “lazy,” “lack of motivation,” or “not trying.” You will never know how exhausted we are. The same rule should apply to anyone else with a disease causing extreme tiredness and lethargy (such as Hashimoto’s or CFS). Please, you focus on you, and I will focus on me.

Thing 2. My diseases are not flaws.

I once had a boyfriend who said to me,

“Christina, you’re perfect in every way.. except maybe for your sleeping thing and that rash on your ankle.”

I get along best with myself when I accept my diseases as a part of me.

No, I am not narcolepsy, but if I think of it in a more compassionate way, it helps me accept and love myself. 

I now work with my diseases instead of struggling against them. It makes life much more livable.

Also, I have a new boyfriend who thinks my lichen planus is cute and lovingly calls me “The Sleepy Monster.”

So, embrace your disease as best you can. If it is a part of you, it is not a flaw.

Thing 3. Just because I have found symptom relief by changing my diet doesn’t mean I was misdiagnosed. Too many times, myself and others in the “gluten free narcoleptic” community have had other narcoleptics and doctors say to us, “Well, you must not really have narcolepsy.”  Nothing could be farther from accurate, but still these beliefs exist. It’s like saying to someone with lupus that just because their butterfly rash gets better when they don’t go outside, they must really not have lupus. Or, just because you have symptom relief from Xyrem you are no longer narcoleptic. How screwed up is that logic? Now, whether gluten intolerance covers a larger spectrum than was once appreciated may be up for debate, but you are not allowed to tell me I’m not narcoleptic unless you’re my personal doctor (who so far has not said that, even when she knows I am more awake on a gluten-free diet).  Also, the alien who visited me last night would disagree with your assertion that I was misdiagnosed.

Thing 4. I don’t make money off of gluten free. Sometimes people (especially in the narcoleptic community) are scared to change their diet because they think we have something to sell or are scamming them in someway. It’s true…there are a lot of companies that make money off of diet fads. I am not one of those people.

I am only interested in young people my age finishing school, graduating from college, and having healthy productive lives, and am interested in facilitating personal health journeys in any way I can, whether or not you decide gluten free is right for you. Personally, going gluten free is what helped me wake up and live a productive life. If you do not try gluten free, or if it doesn’t work for you, we can still be friends.

Thing 5. There is more that is not known than is known. As a scientist, I can tell you that if we think we understand something, probably we are really only just beginning to understand it. What is in a great deal of medical literature is outdated, particularly when it comes to autoimmune diseases.  Narcolepsy is not an exception. There are some things we think we might know, but mostly it is unknown. Keep an open mind and try not to let medical dogma get to your head too fast, and be equally skeptical of all information that you receive. If something works or makes you feel better (and is not harming yourself or others) in some way, do it. Worry about how it might work later.

What is Lichen Planus?

3) What is Lichen Planus?

Lichen planus is three things: gross, embarrassing, and extremely itchy. I’ve had the same spot of LP on my ankle for more than 3 years. It changes shapes slowly, but it’s just as gross as it was when I first got it. (See it in all it’s beauty on my right ankle in the picture below).

It isn’t well characterized as to what exactly it is (other than immune cells invading your skin) but it is commonly seen with Hashimoto’s thyroiditis, and there is good evidence that it is an autoimmune disease (your skin cells have the same receptors that are implicated in Hashi’s). A thorough review of the literature will convince people that it is, and it is taught as if it were an autoimmune disease in many classes, although the exact mechanism isn’t well known.