Happy New Year!

Hi everyone,
This is my last post for 2013! Can you believe it? This year has gone by so quickly!

I just got back from my AWESOME Make-a-Wish trip to New York City! My wish was to go to NYC with my best friend to celebrate my 16th birthday in a way I'll never forget- and Make-a-Wish went above and beyond in every way! Make-a-Wish is an awesome organization, and they deserve your support so they can continue to make the wishes of chronically ill kids and teens come true!!!

Have any of you been on Make-a-Wish trips? I would love to hear about them- let's spread the word about this amazing organization!

I will give details of my trip in my next post- right now I'm tired from my fun-filled, unbelievable wish trip!

Until next time,

Semper Fidelis

The Purpose of This Blog

A few weeks ago, I gave a presentation to the 4th and 5th grade girls in the Sunday school class I help out in. I talked about how to be happy with the way God made you. I used "chronically unique" to illustrate to them how being different is a good thing. Then I realized- that's the purpose of this blog! Why not tell everyone on my blog WHY this blog exists and WHY being different is great? So, without further ado, here is the presentation I gave to the awesome girls in Mrs. Suzanne's class (feel free to ask any questions- I'll answer everything I can!):

I am chronically unique. “Chronic” basically describes something that lasts a long time. It usually refers to an illness that doesn’t go away and just lasts the person’s whole life. We are all “chronically unique” because we have unique personalities and we’ll never have the same personality as someone else. We are stuck with our own identity.

I have an actual chronic illness called Mitochondrial Disease. Mitochondria are little things in your cells that turn the food you eat into energy. When they aren’t working, the body doesn’t have enough energy to do the things that it normally could. In my case, I get tired or sick easily and I have problems with my vision. Despite, in fact even because, of this, I have been able to show God to many people who I would never have met otherwise.

There’s a woman named Joni Earickson Tada who was paralyzed from the neck down as a teen. She has used this for her whole life to reach so many people, whether they have disabilities or not, that she never would have met otherwise. The entire course of her life was changed, and it was all God’s perfect plan.

You have a chronically unique personality. It is just the way God intended you to be. You may wish that you were like someone else, but there can only be one of each person, and you are YOU. God doesn’t have favorites. He has a special plan for you, and your life will never be completely fulfilled if you spend your life wishing that you were someone else.

Until next time,

Semper Fidelis

The Bright Side of Asperger's Syndrome

I have Asperger's Syndrome. While it is technically on the Autism spectrum, it is significantly milder. Because of Asperger's, I tend to take things literally and I sometimes don't understand other people's humor. However, Asperger's is great because I don't have to be interested in what all the other girls my age are interested in. I can spend my time reading great books and researching topics I want to know more about without worrying about how I look or if a certain boy likes me.

Because of Asperger's, my priorities are different than those of other girls my age. Most girls my age know a lot about makeup and whatever boy band or celebrity is currently popular, while I know a lot about outer space and cats. I'm what you might call a "nerd", and I'm proud of it!

Asperger's makes me different, but I like being unique. If you have any questions about Asperger's, feel free to ask me and I'll be happy to answer!

Until next time,

Semper Fidelis

How to Not Get Overheated in the Summer

This is probably overdue- for most of you school has probably already started or is about to start. However, it is still hot, and for people who have trouble staying cool in the summer heat (Mito affects the body's ability to regulate temperature, making the person tired), or anyone at all, here are some ways to not overheat.

1. Stay hydrated. Whatever outdoor thing you're doing, make sure you bring plenty of water. The longer you'll be outside, the more water you should bring. Even if you're swimming and it doesn't feel like you need to drink water, you do.

2. Find shade/air conditioning whenever possible. This is more for people who have something like Mito and get overheated easily, but it's still probably a good idea for anyone. A sunhat with a wide brim can provide shade, and they come in some cute, summer-y colors!

3. If you're at an amusement park, look for mist things and fans. People who build amusement parks usually plan ahead for keeping people cool. There will probably be mists and fans around at a standard amusement park, so keep an eye out for them.

I hope these are helpful! Do you have any ideas? What do you do to stay cool?

Until next time,

Semper Fidelis

DISNEY WORLD!!!! And School...

My school will start one week from today, but for now I'm one last vacation- I'm with my dad and my brother in Florida! We got here yesterday afternoon and went to Downtown Disney. Today we went to Animal Kingdom. On Sunday we're going to Magic Kingdom.

I discovered these cute little figurines called Vinylmation (which is apparently pronounced VINE-l-mation instead of VIN-l-mation). They're all Disney characters, and all of them are shaped so they have Mickey Mouse ears. I found three- a Minnie Mouse with a nerd/back-to-school outfit, a mystery Beauty and the Beast one that turned out to be Belle's horse, and one that was plain white with autographs of different characters on it. They're really cute!

I'm having fun at Disney World, but Disney movies in general are awesome! Aren't those songs great? I get them stuck in my head often!

I am excited for school to be back in. I'm looking forward to having a normal routine again and being a little more organized. My online Chemistry class has already started, and it seems like that won't be too much work. Has your school started yet? I'd like to hear about it!

Until next time,

Semper Fidelis

More About Cane Training

Hi everyone! I thought I'd tell you more about the cane training I had last Tuesday and Thursday. Having a cane is making me feel much more confident in getting around on my own.

First, let me clarify: my cane isn't to help me walk, it's the kind of cane that blind and almost-blind people use to "see" what's on the ground to avoid tripping over things. There are a few different ways I can move the cane when I walk with it. You may have seen a blind person using the "two-point contact" method. That is basically tapping the cane on the left when you step with your right foot, and tapping the cane on the right when you step with your left foot.

Some kinds of cane tips roll, so instead of this method I can use the "constant contact" method, where I roll the cane from side to side as I walk, still keeping it on the right when I step with my left foot and on the left when I step with my right foot.

The other method is less complicated, but I'm only supposed to use it in areas I'm very familiar with and that have few or no obstacles. It's called the "diagonal" method because I hold the top of the cane on my right side and put the bottom of the cane on the ground to the left a little distance in front of my feet.

I also learned the methods for navigating stairs and curbs. Once I get good at those, I won't even have to look down when going up and down stairs!

Like I said in my last post, I got my own cane yesterday! I've been using it pretty much everywhere to get the hang of it. I feel so much more confident getting around on my own now that I don't have to worry about looking down whenever I walk.

Also, I'd like to give a shout-out to my mobility trainer, Sean. Thanks for giving me all this awesome advice and boosting my confidence!

Until next time,

Semper Fidelis

Back to School, Duck Tape, and a New Cane!

I haven't blogged in awhile because I have been trying to finish the last of my summer homework so I'll be done by the time school starts on the 16th. I got some spiral notebooks for some of my classes, and I duck taped one of them this afternoon. Also, my new low-vision cane arrived today! On Tuesday and Thursday I was getting Orientation and Mobility training to learn how to use a cane, and now today mine is here! I'm excited to test it on my own!

The start of the school year is a pretty crazy time, so I probably won't be posting very often until I get back into the swing of things. How are you preparing for the school year? Any exciting new school supplies (duck tape spiral notebooks or a cane, for example)?

Until next time,

Semper Fidelis

Veggie Pasta- Just the Way (Great-)Grandma Made It

Most of my mom's (and also my) favorite recipes are from her grandmother, who I always called Grandmother Faith even though technically she was my great-grandmother. Unlike my mom and I, she never ate cheese. She wasn't allergic, but her reasons for not liking it were that her father didn't like it and that it smelled weird. Once, before I was born, my mom took her to lunch at Krystal's, a hamburger place. My mom decided to order Grandmother Faith's burger with cheese and not tell her. She never found out, but she said something like, "There must be something special about this Krystal burger because it's the best I've ever had!" It turns out she did like cheese after all, and she just never knew it.

One of our absolute favorite recipes is pasta with veggies. Some people may not like veggies, my brother included, but when my mom and I get the chance, we love to make our veggie pasta. Basically all we do is we cook spaghetti according to the instructions on the box, and at the same time we cook some vegetables in a separate pan. We use zucchini, yellow squash, mushrooms, onions, and sometimes red pepper or asparagus if we have it.

When the pasta is done, we put it into the pan with the veggies and put in some sauce. Sometimes we use Alfredo sauce, other times we make Grandmother Faith's Blonde Roux (white sauce). Take equal parts butter and flour-- melt the butter over medium heat in a sauce pan, take the pan off the heat and slowly add the flour sprinkling it in and stirring constantly, stir until it starts to get thinner and more like liquid  (that means it's cooked), put it back on the heat and add milk.  Whisk milk into mixture (about a cup for every 1tbs butter/1tbs flour).  Keep whisking!  The mixture will start to bubble and let it do that for about a minute if the sauce is too thick add a bit more milk.  Add Salt and Pepper to taste. 

Once the veggies are cooked (not too much or they will be soggy-- it's nice if they have a little crunch in them), add the pasta to the pan, and the sauce to the pan, and then grate lots of fresh Parmesan cheese over the top.  Delicious!  It is really good with a salad on the side.


If you want to make it in true Grandmother Faith style, leave off the cheese. After all, it smells funny!


It is one of my favorite dishes to make with my mom, and I hope you enjoy it as much as we do!

Sausage Cheeseballs- Never Out of Season

I said I'd be posting about normal, everyday stuff instead of just my medical craziness, so here goes: I'll post a recipe.

This is a recipe that my family has enjoyed around the holidays for as long as I can remember, probably even longer. Even now that my parents are divorced and my dad is remarried, both my mom and my dad still enjoy them. I know it's July, not Christmas, but there's never a wrong time for Sausage Cheeseballs.

Ingredients:

2 lbs (32 oz.) of uncooked sausage

1 ½ cups of all-purpose baking/biscuit mix (Bisquick works well)

16 oz. of sharp cheddar cheese (or 4 cups shredded)

Optional: ½ cup of finely chopped onion, ½ cup of finely chopped celery, ½ teaspoon of garlic powder; for a firmer mixture, add an extra 3 cups of the baking mix and an extra two cups of shredded cheese.

Procedure: Preheat oven to 375°F. Shred cheese and mix all used ingredients. Form the mixture into 1” balls. Bake the balls 15 minutes on an ungreased cookie sheet until golden brown. This recipe makes about 6 dozen sausage cheeseballs.

For a more summer-y snack (but again, there's never a wrong time for sausage cheeseballs), you could always make open-faced cucumber sandwiches. My stepmother and I actually made these for dinner tonight, and she wanted me to post the directions on my blog for you.

Serves 4

Ingredients:

1 cucumber, sliced thinly

4 pieces of bread

Cream Cheese

Lemon Pepper Seasoning

Cut the crusts off each slice of bread. Spread the cream cheese on the bread thinly (unless you want more- it doesn't matter how much you put), then evenly divide the cucumbers between the bread slices. Sprinkle lemon pepper seasoning on each slice on top of the cucumbers.

I hope you enjoy these recipes! If you try them, let me know how they turn out. I'll be posting more soon!

Until next time,

Semper Fidelis

Mission-Stay-Cation

Medical stuff aside, I actually had an awesome week serving people around the area of my church with a group from our church on something called "Mission-Stay-Cation". What our church usually does, and what my mom, my brother, and I did last year, is they send a group of families and their kids on a short-term mission trip to Brunswick, GA. It's called "Mission-Cation" because in the mornings we do a service project, and in the afternoons we have free time to spend on the beach on St. Simon's Island, which is right next to Brunswick. This year, a lot of the families wanted to do Mission-Cation but didn't have the money to go. The church arranged a "Mission-Stay-Cation", where the service projects were in our area and in the afternoons the whole group would go and do something fun together, like bowling.

It was an awesome week of serving God and the people in our area who needed us! Like I said in an earlier post, I missed the first day because of what's been going on. However, I was able to participate in all the other projects! Today was probably the best day of the week because I was sharing the gospel to little kids using Frisbees that had John 3:16 (in Spanish or English) and coloring pictures on them.

Here's a link to my church if you want to know more: http://fellowshiproswell.org/

Until next time,

Semper Fidelis

Still Waiting for Results, But Meanwhile...

Yesterday the neurologist told me to go to the emergency room to get some bloodwork to see if anything was wrong with my calcium or electrolyte levels or something like that. That came back OK, so we scheduled an EEG for next Monday to figure out what is going on. Your support and prayers would be greatly appreciated as I get through the rest of this mess.

I haven't had another "episode", which is great! I was actually able to go on the second day (I missed yesterday, the first day) of my church's "Mission-Stay-cation". In the morning, everyone in our group helped three different families with their yard work. In the afternoon, we took the families to a bowling alley and had lunch with them. It was a lot of fun to serve and socialize with them! It felt great to be out and doing things instead of staying home waiting for a call or being in the hospital.

This evening, my mom, my brother, and I went out to see Despicable Me 2. If you saw the first one and thought the Minions were hilarious, then you should definitely see this one too!

I want to thank everyone who has seen and shared my blog. It's doing so much better than I had hoped!

What are you doing for fun this summer? To phrase it another way, what are you doing to keep your head throughout the organized chaos until school starts back?

Until next time,

Semper Fidelis

Neurological Messes and the Cats Who Snuggle Through Them

Last night I had some kind of neurological episode. I'm still not sure what it was (my mom and I are waiting for a call back from the neurologist), but I'll do my best do describe it.

It started out suddenly, but at first it seemed like one of my "normal" dizzy spells- basically my body's version of migraines. I thought it was the kind that would go away in a minute or so, but next thing I knew I could barely think. I've had a few dizzy spells like this, but usually what happens is I get my mom and we wait it out. The confusion part is usually over in a few seconds, and it just feels like spinning. This time, though, the confusion lasted longer. I tried to describe it to my mom, but it wasn't easy. Then, the scariest part happened. My legs and arms started twitching. It wasn't as violent as a seizure, but I couldn't make it stop. We almost went to the hospital, but we decided to wait 30 minutes and see if it calmed down. It did, not all the way but enough for me to go to bed. By this morning, I had stopped twitching completely.


You know how there are some dogs that can tell when someone's about to have a seizure? I think some cats are like that too. One of my three cats slept in my bed all night, which is completely unlike her personality. Not that she's mean, she's just usually aloof and on her own. She was so sweet last night!

I hope we can get some answers to this soon. I don't want it to happen at school. Honestly, I don't want it to happen again at all. Hopefully the neurologist will have some answers.

Have any of you had something like this happen? I have no experience with this except the migraine part. If you have, let me know in the comments.

Also, are there any other Mito teens out there who are just trying to have a normal summer when everything goes wrong at once? That seems to be the pattern with Mito, and it's really frustrating, but at least we have each other.

Until next time,

Semper Fidelis

Welcome to my Blog!

Hi! I'm Semper Fidelis, and this is my first post on my new blog, "Musings of a Chronically Unique Teen". I say "chronically" because I do have a chronic illness - called Mitochondrial Disease* - that affects my life in a big way. However, that isn't what this blog is about. This is about having fun and not letting anything stop you from accomplishing whatever you want to do with your life.

I believe that there's no such thing as normal. It simply doesn't exist. We all feel out of place because we mistakenly believe that everyone but them is the same. On this blog, I'm choosing to celebrate my chronic uniqueness. I hope you'll join me in celebrating being wonderfully different!

*Mitochondrial Disease (Mito for short) is a chronic neuromuscular disorder that affects the body's ability to produce energy. Since mitochondria are in every cell of the body, it causes a lot of different problems. Basically, it makes me get tired or sick more easily. However, I never let it stop me from doing anything!

If you want to know more, here are some links to some organizations that are researching treatments and cures for Mito:

http://mda.org

http://www.umdf.org/site/c.8qKOJ0MvF7LUG/b.7929671/k.BDF0/Home.htm

-Semper Fidelis

(P.S.- in case you're wondering what my pen name means, here's a link to a good Latin dictionary:

http://ablemedia.com/ctcweb/showcase/wordsonline.html)