Friday, September 19, 2014

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"

1 comment:

  1. Mattie,
    FANTASTIC answers!
    Superbly well done!
    ALWAYS cheering you onward and thru each challenge as it shows up in your life.
    Much Love, Warm Support and Prayer-songs all flowing.....
    Ms Lu (and Mocha, grin)