A-Z Disability Challenge | A : Arthrogryposis Multiplex Congenita

Howdy!

So, last week I basically announced to the world that I was starting my own challenge. I have created this challenge to talk about disability topics in alphabetical order. Some will have a personal touch, like today’s post will discus my condition: Arthrogryposis Multiplex Congenita. The others will be educational and/or opinion pieces. I wanted to give you a good mixture of different themes that everybody, whether you have a disability or not, would understand a little better.


Honestly, I just wanted to write this for people who are really curious about my condition, and who are maybe a little embarrassed or shy to ask me questions up front. This will hopefully help you understand a little more about what it is, what areas it affects, and some of the stuff I’ve had to learn to do, to adapt to my surroundings.

Arthrogryposis Multiplex Congenita is simply as a joint condition that can affect many areas of the body, but it is formed in the womb. Since my joints of my arms and legs are limited to movement, the muscles never really developed, thus why they are really skinny. My arms have always been bent at the elbow, I’ve had many therapy sessions to help lessen the tension in my arms. My elbows will never unlock and I’m okay with that. I’ve always had insecurities with the fact that my hands just lie there. I was never able to use my fingers, but there are a lot of people and young kids whose hands like mine and they can actually write and draw with them. I don’t know what actually possessed me to use my feet, but it was definitely a day to remember for my parents that’s for sure!

I am not able to walk like everybody else. I have two very different feet, and neither one are able to lay flat on the ground, so whenever I did experiment with walking, I usually walked on my tippy toes instead. I grew up rolling and eventually scooting around on my bottom. The only way I can explain for the rolling is because since I wasn’t able to move my arms on my own to get them out of the way, I think my family was afraid I’d get rug burn, so I just started rolling around. Thankfully, I was so small that I could fit through most doors and hallways. I can’t give you a definite age when I switched to scooting but it had been before I was four years old, because I was going to a special school and honestly I needed a better way to get around. I was pretty slow, but I didn’t care one bit. I use to chase my sister and cousins around my grandparent’s house all the time! Of course, for long distances, I was usually carried around but when I was four years of age, I got my first wheelchair and then the roles were reversed and everybody had to chase me!

As I continue to get older, I am in more and more pain. The majority of it is around my back, but the rest of it is in my hips and knees. I was very active as a child, but as an adult, I’m a pretty-stay-in-one-place for a long time. I can sit in the same position for close to three hours and power through the pain in the sides of my hips in order to get work done. Don’t worry, I was not in any pain while writing this post! I feel like I should be considered lucky with the pain in my knees, because I have family members with different types of arthritis, so I always know it could be worse. My nana goes old school and just rubs Vicks on the affected area, I’ve tried talking to my mom about going that route but I agree with her of the overwhelming smell, so I take painkillers to ease the pain away.

If you have any other questions, I will be doing a Q&A later on in the challenge, so just leave your questions below if you’re curious about anything.

To The Ones Who Mock Us

Thanksgiving day for me, started out pretty good. We had our family meal on Black Friday, so I chilled out at home. I lounged around, watching movies and occasionally going on my Facebook and Twitter to see everybody else enjoying their family fun and the delicious food. Everything was fine until about noon and it all went to hell.

I was scrolling through my Facebook and I saw this video and a very long status of somebody in the Arthrogryposis Multiplex Congenita Facebook group that I’m happily a part of. Everybody in that group was furious. I didn’t want to watch the clip, FB just started playing it. Just reading the captions on the screen and all of the comments below pretty much took my breath away. I was so hurt. I’m not interested in politics, I actually try to stay away from it, but my folks are, my dad is still deciding I think, but my mom is, well was a supporter of Donald Trump.

After I saw everything on Facebook I retreated offline and watched the rest of Gone With The Wind from the night before. I didn’t know what to feel honestly. So I bottled it up, I just didn’t think I’d take my anger out on my parents. My poor mom came home from work to me in a mess of emotions. I was really upset and just before she took a nap I basically broke down. I was crying my eyes out. I was really hurt on how somebody who needs people to vote for him for president would make fun of another person’s disability. It doesn’t matter if that other person is a journalist, he is still a person and has feelings. People and family members of children like myself with AMC have feelings too. It’s never fun to be mocked by people who have nothing better to do.

Several days have past since seeing the video, thankfully not a lot of my family members have shared the video and talked about Mr. Trump with me in the room. I’m still fairly upset, because you know, he won’t apologize for it. At least he won’t give an sincere apology to the guy. It wouldn’t even matter if he apologized to all of the families that he offended, including mine. It wouldn’t mean a damn thing because the damage has already been done.

And then Kylie Jenner decided to piss off the wheelchair community, which is something else that I’m actively apart of since I don’t walk on my own two feet. Sad part is, I was less mad about it. Yes. I agree why everybody’s mad, she’s using it as a prop while the rest of us use it to get around. I’m on my second wheelchair but I’ve been waiting for a new one since 2013. The one thing I’m mainly upset about and I think everybody else would be too if they gave it some thought, shouldn’t this be part of the magazine’s fault for allowing this to happen in the first place? I’m not saying she’s not wrong, but think about it. Who made this to become the prop of the whole photo shoot? I doubt it was Kylie’s. So who’s really to blame here?

My most important question of this entire post is since when did it become cool to mock a person with any handicap? This goes for invisible, mental and physical disabilities. We have real problems here. I mean, the more these public figures continue to make the stupid choice in making fun of a person with a disability on television or in a magazine, who’s to say that they’re admirers won’t disagree? Everybody has said “we need to stop bullying” but yet I keep seeing these things pop up everywhere. You may have the right to freedom of speech, but it’s all bullying! Every single way you do it, it’s mocking somebody else’s daily struggle. I’ve been handicapped since the day I was born. Nobody has the right to make fun of what we might have wrong with us! And there’s nothing wrong with us, you’ll lose more people this way rather than gaining them.

So I’m done, for now.

Two Weeks Until Arthrogryposis Awareness Day!

blue

Yesterday as my time with three little kids came to an end, my sister sat in the backseat making conversation about how good the kids were to me. Because as everybody in my family would know, kids are very different adults. They don’t have filters and see things in different lights than us. Blondie had said that she was surprised of how well they treated me and how little Katie just wanted to be around me and help out as much as she could. Katie’s got a bit of her mom in her as Kristen is a CNA. So she’s got that wanting to help already inside her. She wanted to take pictures with my phone, she wanted to paint my nails, she wanted to do my arts and crafts that I attempted to do with both kids. She was just willing to do everything for me, she even feed me waffles yesterday morning. It was nice but I felt like I was turning her into my sister. You see, our roles have switched she has times were she’s had to become the older sister and protect me. I feel like she grew up too fast having to do all sorts of things for me. Seeing it happen again with Katie, makes me feel all weird like she just wanted to help me out. Help everybody out in a way. Maybe that’s what Blondie was doing years ago too and I’m just now seeing it.

At the beginning of this month I had made this sign, kind of like the one above for a blog post for a Ketchup With Us. It was a list of things about my disease that I have. The reason why I’ve been trying to create so much noise for it is because last year was my first time ever knowing that there was an awareness day and I didn’t do much to spread the word and I’m pretty sure I didn’t wear blue that day either. I wanted this year to be different, so I’m basically telling my inner self to shut up and spread as much as I can. I’m always supporting a person and I don’t always want anything back because I don’t want to be rude. I would love for everybody to help support the awareness of Arthrogryposis with my family and I. Kristen has already told that everybody will be wearing blue on next Monday and that’s makes me happy! I’ve been posting messages on my Facebook to help remind my family and friends, but now I’ll be posting on here since we’re two weeks until the actual day.

Here are some guidelines for you:

If you wear blue (and jeans count) then you can send the picture of yourself to either 

My Facebook page: Got Meghan’s Blog

or

Twitter: @gotmeghan

PS: If you would like me to not post the entire picture on my blog because I’m planning on doing a blog post of my day that night. I will crop your face and your children’s faces. I’ll post them with an initial or nickname if you don’t want your first name on the picture as well! I understand privacy is very important and I will understand if you’d like for me to do this. I don’t post any names pictures if I don’t have permission and I usually try to make sure that I don’t get their faces either. It’s just a rule that I’ve come to adopt recently.