Mito Awareness Week -- Answers :)

First off, I just wanna say THANK YOU!!! to all of the people who were willing to put themselves "out there" and ask me a question! It was great getting so many responses, and I just want to let you know... over 3,200 people have viewed my blog! This is all thanks to you guys!!! You've helped spread awareness, and made one little girl very happy.

- What's been the hardest thing about having Mito so far? Have you noticed any new strengths that have emerged as a result of dealing with it? What's the biggest thing folks seem to misunderstand?
Well, the one of the hardest -- and most rewarding -- things is meeting those people who don't understand. I mean, when you stand up out of your wheelchair and start to move around, you can get some pretty weird looks, and occasionally some rude/embarrassing comments or questions. But there is also that emotion, that rewarding feeling, the pride you get from knowing that you've just made one more person aware. That you're that much closer to awareness and to a cure. Hmm, any new strengths? Well, when you get used to the "meeting new people, getting over the awkwardness of introductions" thing, you find that you're a whole lot more willing to put yourself "out there". You can put yourself on the spot. You meet more people, spread awareness, and find that you aren't really all that shy or embarrassed about it. Now, the biggest thing that people misunderstand is that I am a normal girl. Yeah, I've got a weird disease that no one's ever heard of. Sure, I get tired, and take breaks, and need extra time. But I still love to play piano, and talk to my friends. I may take some extra time, but I am gonna take that test and get an A+! I love to read, and since my hands get tired writing, I type my stories and poems instead.

- What is the hardest thing you have to deal with relating to mito? Is there anything those of us without mito could do to make things better or easier for you or others with mito or is there anything you wish others understood about mito (misconceptions you run into)? Anna Ziller
Again, the hardest thing relating to mito would be meeting those without. It can be pretty difficult! I mean, imagine introducing yourself to someone you've never met. You tell the person your name, how old you are, etc., and if they ask, you explain why you are .... blank. The "blank" can be filled in with "sick", "different", "conspicuous", "noticeable", "shy"... anything like that. A lot of people focus on the "blank", and not on the rest of the information. You can find yourself being labeled a certain way because of that "blank", and the person you meet might just forget that you like vanilla ice cream or that your favorite color is turquoise, not aquamarine. That can be hard. Now, something that people could -- and really should -- do to make things easier for those with mito, and many others, would be to NOT focus on the "blank." Don't forget that it's there, but don't make it your focus.

- What would be the hardest part of this disease for you? Also, Dawn asks how you manage going places. She gets tired so quickly. Kristy Garrigus
I am (usually) able to manage going places by using my wheelchair. If we're not going to be walking a lot, I might not bring my chair, and I'll walk in and out of wherever we're going. But at school, I am almost always in my chair! It does help that I have a power chair in addition to my manual. The school bus comes and picks me up in my power wheelchair (that lift on the bus is super fun!!!), drops me off, and I stay in the chair until I get home. When I'm going somewhere with my family, I might take my manual and have someone push me. Or, if I feel like being independent, we'll put my power chair on the back of the car. Another thing that definitely helps is that I have to work on conserving my energy, a LOT. I am constantly taking my temperature, pulse, and blood pressure to make sure they are staying relatively normal, and I have a nurse that goes with me to school, doctor's appointments, etc., 5 days a week.

- To what extent does mito disable your body (which body parts does it affect)? Maggie Hipps
Mito affects almost every part of your body. It can hinder people's ability to talk, walk, and even eat or drink! The parts of the body that need the most energy, such as the heart, brain, muscles and lungs, are the most affected by mitochondrial disease. People who have mito will get tired much more easily than other "normal" people. They are also more likely to have strokes, seizures, sight and hearing problems, muscle failure, and diabetes. However, not all of this affects me personally. I have hearing problems, and wear two different hearing aids at school. I do have to wear glasses. I get tired pretty easily. Mito can affect my stomach, making me feel full or super hungry at times. I wear a C-PAP to help my breathing at night, and I have a port to make it easier for my IVs. But I can walk, talk, see, hear, eat, and drink.

- What is the average life expectancy for someone with mito? Angie Hipps
This question is a little more difficult, because people with mito are constantly misdiagnosed. It also really depends on the severity of the person's illness. Some people with mito cannot see, hear, talk or walk, while others like me can lead relatively normal lives! While some of those affected can have lives that are a normal length, many affected children do not survive past their teenage years. This is due to misdiagnosis, the severity of the disease, and also just the plain lack of a real cure.


Anyone who sees my blog, please feel free to comment!! If you have more questions for me, feel completely free to post it, even after Mito Awareness Week is over! Spreading awareness isn't limited to one week per year. I will answer anything, anytime.
Thank you so much to everyone who was willing to post a question to me or share this post!!! I really, really appreciate it. And I am so glad to have readers like you, who care about the subject and post replies, and read everything I write (even the times when my writing isn't all that great).
~ Mattie <3
"Spreading Awareness, One Person At A Time"

A New Poem

 I wrote this for my Language Arts class. It is a poem called an "apostrophe", which is basically a poem that you write to someone or something that is far away, gone, or passed away. This is to my GG.

I miss how we used to sit outside

And just swing, swing, and swing some more

I miss how we used to talk

Every time I came to visit

Every morning and every night

Can you believe how much we talked?

I think we talked about almost everything

I miss how we used to sit and paint

Your sight almost gone

Yet your paintings were beautiful

You captured everything

Everything anyone else would have just pushed to the side

I miss the swish of the brush, and your look of concentration

I will never forget when you told me “your work is beautiful”

For you never complemented lightly

Without meaning to,

You taught me about life

Hard times and struggles

But also about good times and loved ones

GG, I love you and I miss you so much

Thank you for the impact you made in my life

Mitochondrial Myopathy Awareness Week!

Hey guys!
So, as some of you might have heard, September 14-20 is Mitochondrial Myopathy Awareness Week! This year, I'm going to do something a little different than my usual post about my condition. Instead, I am going to ask you all to post questions you have about mito into the comments section! I will write a post answering all of your questions during the actual awareness week.
Please, please, please remember that there are no dumb, ignorant, or silly questions! I really want to know what you guys are wondering about. A lot of people have questions about my disease, or they wonder what's going on with me, but they are usually too shy or embarrassed to ask me about it. Don't be like that! I am going to try to answer every single question posted on here, no matter what they're asking. After all, this is Mito Awareness Week, and I want to make all of you -- and your friends and family, too -- completely and totally aware of what mito is and how it affects me every day. I am totally willing to answer anything, whether it be a physical question, an emotional one, or something about my everyday life.
So go ahead and post any and all questions you have! And, go ahead and share this post with your friends and family members. I'm trying to get the word out about mito, but I can't do it myself -- I'm going to need your help!

Spread the word!
I hope you all have a great week!!
~ Mattie

School Poem

Sure You Can Ask Me A Personal Question

By: Alyssa Lorenzen, 8-16-14

Hi, how are you?

            No, I am not a diva.

No, I am not fashion-obsessed.

            No, I am a reader; yes, books.

No, not boy-obsessed.

            No, I don’t hate school.

No, I don’t hate P.E.

            No, I do not sing,

At least in front of people.

            Yes, I am a girl.

Oh?

            So, that’s where you got your flexibility —

Ballet, I’m assuming,

Or some other kind of dance?

Martial arts?

            Let me guess, white belt?

Oh, so you've practiced for years?

            Let me guess, you still hit like a girl?

 Black belt, quite impressive.

            Let me guess, they went easy on you?

Oh, so you teach classes?

            Let me guess, just the little kids? So hard.

Yeah, it is hard what you say about us.

            Thanks for the apology.

No, I don’t know where to buy blonde hair dye.

            No, this is just the natural me.

Yes, I know what equals 2+2.

            Don’t believe everything you hear.

I don’t know why these jokes are seen as truth.

            But I know that I disprove them all.

Yeah, uh-huh. Hair.

            Uh-huh. Yeah. Fashion. Totally. Shopping.

Uh-huh. Like, make-up. And stuff.

            No, I’m not going to major in cosmetology.

Yeah, some of us wear too much make-up.

            Some just plaster it on.

This isn't hidden identity.

            This is me.

School and Poetry

Hey everyone!!

So, this week, school started!!!!!!!!!!!!! I was (and still am) super, super, super excited! All of my classes at the school are amazing. :-) Even though my mom and my nurses are still trying to work out the temperature/desk size/transportation stuff, I am REALLY enjoying school!! The only really bad thing? My online classes -- PE (yeah, right, I'm totally going to wear the heart monitor and do the exercises) and AP Human Geography -- are not up yet! I have to wait until the 18th for those classes. But, to make up for it, I'm finally getting my locker tomorrow!! My mom bought me this locker wallpaper thingy (I forgot what it's called), a mirror, an organizer thing for pens, pencils, etc., and I can't wait to get my locker and combination so I can put all of my things in there!

My teachers are all super-duper awesome!!!! Ms. Shields teaches my Accelerated Algebra II/Geometry class (where I'm one of the youngest students!), and even though I usually don't like math, she's made it fun to learn and review! Well, so far, anyways.... :-P  I mean, how long can people make you think that math is actually not horrible? But Ms. Shields is pretty good at it! And she's super nice too.After Ms. Shields, I have to go up to the 3rd floor of the school for Gifted 9th grade Language Arts/Composition with Mr. Jones. (I STILL get lost trying to find the elevators, and it's been three days!!!) Today we did our SPG test in Language Arts, and yesterday we just talked/got to know each other, and on Tuesday we basically went over a couple rules and played a game -- so we haven't REALLY learned anything yet, but I still think that it's going to be one of my favorite classes! Mr. Jones is really nice, and funny. He likes to come up with little games and activities for us, and I'm pretty sure that every single person in the class enjoys them!! We also go to lunch and advisement with him. After all of that, I head downstairs (WHERE IS THE ELEVATOR?!?!) to the second floor, go over the "bridge", and find Ms. Wilson's class! She teaches my Gifted Chemistry class (where I think that I'm the youngest student there! There are seniors taking that class with me!). Ms. Wilson is awesome!!! She's fun, and funny, and crazy -- in a good way, of course. :-) She was my brother James' teacher last year, too, when he was in 6th grade. According to James, she would sometimes come to school in an astronaut suit (!), and when I asked her about it, she said that yes, she has her astronaut suit, and she almost wore it to the first day of school!! (But apparently she decided that it wasn't very... professional..... even though an being astronaut is a profession!) After Ms. Wilson's class, I have to go back over the "bridge", find the elevator again, go down to the first floor, and navigate my way to the Yearbook room!!! Mr. Phillips teaches our Journalism II/Yearbook class. He is really nice, and seems super interested in everything that's going on. Right now in class, we are trying to come up with a theme for the yearbook. We all split up into groups of 3-5 people, and brainstormed together... right now, my group is thinking about a technology/iPad theme! We want to make the cover look like an iPad with a yearbook "app". If our idea is good enough, then we'll get to use it to design the entire yearbook, and it will look SUPER cool!!!!!! Oh, and the media center at school looks amazing!! They have tons of books... but I'm a little bummed because I haven't had time to go there yet! Oh well... maybe tomorrow! Or Monday!

I'm not going to just talk about school this time -- even though I could probably talk (and/or write) about it for hours at a time!!!!!!! I wrote a poem the other day... about one of my nurses, Ms. Katie. See, we were sitting at the kitchen table and I was reading her a poem, when she said, "Mattie, how come you've never written a poem about me?"

"What?" I asked her.

"I was thinking that, you know, we could write one together, about how awesome I am!" she said, REALLY enthusiastically!!!!

"Um, how about I write one about you... but not necessarily about how awesome you are?"

She looked kind of bummed that she couldn't help, but she said, "Okay, read it to me when you're done!!"

Fifteen minutes later, I had her poem finished. I read it out loud to her:

Ms. Katie

She loves to wear gigantic rings,

She laughs, dances, jokes and sings!

Ms. Katie will cook, medicate and clean,

And she does everything in between!

It's possible she might be OCD...

Yet she still can't get the hang of the Wii!!!

She makes me laugh, and she's tons of fun,

And though I hate to admit it... I like her a ton!

She read it again to herself, and then out loud to my family, so they could hear it too! And then she took a picture of it, and sent it to her brother, her sister, her mom, and one of her friends!!! One of them messaged back, "Mattie's sure got you pegged!" to Ms. Katie. It was awesome, seeing her face when she read it, and reading the messages from her family and friends that were for both of us.

So now, Ms. Katie has her own poem, and there are two more soon to come! (One for Ms. Kristi and one for Ms. Wynona, my other nurses.) When I've got those, I'll make sure to post them to you!!! See ya later!

~ Mattie <3

A Post Full of Random-ness

Anyone who knows anything about me knows that I love to read! So, at the end of this past school year, I was super excited to see the list of books for the rising 9th graders summer reading assignment. However... I had never heard of a single one of the books before!! I couldn't decide which book even sounded the most interesting. So, about a week and a half ago when we were at the library, I went on a computer, searched for all of the books... and only one of those summer reading books was currently in the library! And I only need to read one. So, I went and found the book, and checked it out (along with my other 7 that I wanted to read during my free time)! The name of the book is "Steelheart" and it is by Brandon Sanderson. Here is the summary:
Ten years ago, Calamity came. It was a burst in the sky that gave ordinary people extraordinary powers. The awed public started calling them Epics. Epics are no friends of man. With incredible gifts came the desire to rule. And to rule man, you must crush his will. Now, in what was once Chicago, an astonishingly powerful Epic named Steelheart has installed himself as emperor. Steelheart possesses the strength of ten men and can control the elements. It is said that no bullet can harm him, no sword can split his skin, and no fire can burn him. He is invincible. Nobody fights back . . . nobody but the Reckoners. A shadowy group of ordinary humans, the Reckoners spend their lives studying Epics, finding their weaknesses, and then assassinating them. And David wants in. When Steelheart came to Chicago, he killed David’s father. For years, like the Reckoners, David has been studying, and planning, and he has something they need. Not an object, but an experience. He has seen Steelheart bleed. And he wants revenge.


19 days ago (June 16th), my gigantic chocolate lab, Raphah, had a birthday party! He is 80-90 pounds now... and one year old! At his party, we had these ice cream things that were meant for dogs... I think they're called Frosty Paws? Or something like that. Anyways, all four of the dogs loved them! But... well... Paco, the four-and-a-half pound Chihuahua, would eat a little of his, get body freeze (instead of brain freeze), and try to run off to find something or someone warm! But minutes later, he'd be back for more ice cream. The other Chihuahua, Cee-Lo, definitely was freezing, but he didn't seem to care! Apparently it was worth it. Our papillon, Chloe, didn't seem to notice or care if it was cold. And Raphah, well.... let's just say that he was done eating about 30 seconds after he started. We had to give the birthday boy some presents, too, so my dad went to the store and came back with two GIGANTIC bones. Raphah loved them... and so did the chihuahuas, who immediately stole them. I don't think my chocolate lab will ever be allowed to touch his present again!

Yesterday was the Fourth of July (duh), and to celebrate, my dad, sister, brother and I all went outside when it was dark! Some of our neighbors across the street were doing fireworks. We watched some of the fireworks, lit sparklers, and used some of those popping things that you throw at the ground and they flash (what are those called?). It was a ton of fun!!! But I had "Independence Day" by Martina McBride stuck in my head the entire time..... I love almost any song by Martina McBride, and that one is especially awesome. However, ANY song gets annoying if it's in your head for too long! But it's out of there now... it was replaced by "Anyway"!!

See ya!

... And summer break has arrived.

Hey guys!
So, you know how I'm always talking about school? It's like, school, school, school, school, school every single time I look at past posts! But, um, that's kinda because I really, truly love school!!! And now..... *sigh* ... I'm really sad, because school is out and summer break is here.

See, at my house, we have four dogs (two little chihuahuas and a papillon, in addition to the GIANT chocolate lab). I have an older sister, Alyssa, and a younger brother, James. I also have one-on-one nursing every day! And then on holidays, like Memorial Day, my dad is home from work and we usually go visit family. So, it makes sense that summer at our house is always crazy!!

And my brother loves to play Risk.... and no one else at the house really wants to play it. Ever. At all. Which can make him pretty mad, because you can't play Risk with just one person! Sometimes, he refuses to play any game at all unless it is Risk, or unless you promise to play Risk afterwards!

And my sister is obsessed with these new TV shows, and she's always watching them on her phone. (The Walking Dead? Bones? Castle? Seriously, Aly?) She doesn't want the shows to bother anyone else, so she wears headphones. And then, half of the time when you are talking to her, it turns out that she either a) didn't hear a single word you were saying, or b) she didn't understand a single word you were saying.

And, my nurses are INSANE!! (No offense to any nurse who might be reading this right now.) One of my nurses is absolutely terrified of dogs. She's starting to get used to the little puppies -- you know, the four pound and the six-and-a-half pound chihuahua -- but she still screams every time Raphah, the lab, goes  near her. She also likes to joke about us training him.... because he is still a puppy, and doesn't always want to listen when we tell him to sit, lie down, or wait. The key word for Raphah to know that he's doing the right thing is, "Good!" or "Good boy!" Sometimes my nurse will say, "Good! Good boy, Raphah!" when he's doing the wrong thing. It kinda messes with his training, but she thinks that it is awesome. My other nurse will try to get me to plan out the entire day with her! And usually our plans involve games. Every summer, she and I have a competition to see who can win the most games, total, over the entire break! So we end up having picnics (both inside and out), dressing up my dolls and stuffed animals, and playing games (both electronic and board games).

Sometimes, when the dogs see or hear someone or something outside, they start barking like crazy. My mom and I will be trying to catch them, and make them stop barking -- but we don't usually succeed.... My sister is usually on her phone, with her headphones in, paying absolutely no attention to what is going on around her. Then, my nurse (who is usually terrified of dogs, but at moments like these can be found laughing hysterically) will yell, "James, get the tuba!!!" And so my brother, who was in the 6th grade band at our school (and is moving on to 7th grade advanced band), will grab his tuba and start playing random songs out in the middle of the chaos. Fun, right?

And...... have I mentioned yet that I have a brother, a sister, four dogs (one of which is a giant puppy), a nurse, and sometimes my dad doesn't have to go to work? ... I think I did. Maybe. Probably.

But I can't be sure.