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.

Arthrogryposis Awareness Day!

amc

Howdy!

We’re getting close to that date! Usually I start posting to spread the word for Arthrogryposis awareness day pretty early in the month, but I’ve decided to wait a bit this year. I figured If I had more time to get this post ready, I’d actually make it interesting enough for more people to join! I always try to have a reminder post and little fliers on my social medias if anybody wanted to pass it along to their friends and family. By the next day or so, I have another post publish about the outcome of it and include a collage of pictures that people had sent me of them wearing blue to show their support of my condition Arthrogryposis! This time I am thinking about writing about it for my Bloggeration August piece!

What is Arthrogryposis? – If you’re new to this blog and don’t know what my condition is exactly. The medical term as a whole is Arthrogryposis Multiplex Congenita. It’s a joint disease that starts in the womb. It’s caused from the fetus not being able to move around. So my arms are bent at the elbow and locked in place. My legs are also very skinny; I essentially have no or very little muscles in my arm, hand and leg areas. It’s the reason why I use my feet for everything because my hands and fingers can’t do anything else.

How you can show your support! – Every year since 2013, I have been celebrating with my fellow AMCers in wearing the color BLUE! That first year, I knew about it but I forgot to have my mom change my shirt and/or pants! Oops! My whole family tries to blue on the 30th and so can you! If you don’t have anything blue in your closet but jeans is fine with me! I’ve even had people paint their nails blue because they didn’t have anything else!

If you want to, I have a little flier on my Facebook page that you can use to spread the word to your friends and family. If they want more information about the condition, you can send this post to them!

Tag Me! – If you do decide to post a picture of yourself on Facebook or Twitter, please tag me in it so I can see that you’re supporting the cause! I’d really appreciate it if you could join the fun! Since I am planning on putting this piece on someplace besides my own blog, I’ll be cropping your head off so that nobody knows what you look like and just knows you supported the cause!

Hope you guys can celebrate with me on the 30th!

Thank you!

snowflake

Facebook | Twitter | Pinterest | Bloglovin

NEXT WEEK!

amc

Howdy!

One more week will be Arothrogryposis Awareness Day! If you’ve never heard of the disease before, it is a joint disease that affects my upper and lower body. This is the reason for my curved arms and skinny legs and why I’m always complaining about my hips hurting all the time! Last year, it was the first time I ever celebrated the day by wearing blue and making some noise on all of my social media accounts. I don’t like tweeting celebrities a lot, but I did sent out quite a bit of tweets last year to try to get the word out about why they should wear anything blue. I even got my favorite Push Girl and inspiration Tiphany Adams and one of my favorite singers/bloggers Anette Olzon to wear blue on the day! Yes, I cried, but I think I cried so much because between spreading the word with my family I made up a blog post of all everybody wearing blue and it was so awesome! It made me feel good to know so many people cared and showed their support!

I’d like to get the word out as much as I can without it being too overwhelming. That’s why I waited this long before to start saying something, because too far along, people tend to forget and ask you all the time when the day is so the week before will hopefully prove to be better for everybody! I’d love to get more pictures to upload onto a blog post again, but since I was being self cautious about having my friends and families faces on my blog, I didn’t want strangers going and stealing their pictures you know? So I think this year I’m going to just crop everybody heads off their pictures so I can keep the post up all year long than just three days. I’m actually really excited about telling more people about Arthrogryposis and seeing people dress up in blue to support!

How can you join? Wear any shade of blue you got! I’ll even count jeans and painted fingernails! Hell, I don’t care if you dye your hair blue for the week! If you do that I swear I’ll love you forever and I’ll put the picture at the top of the post!! I’m not going to beg for you to join, you don’t have to. If you don’t want to or in some cases don’t own any blue in your closet, trust me I don’t even have a lot of blue in my own closet! I’m pretty sure I’ll be wearing my Elsa pajamas because that’s basically the only amount of blue I have left! I’ll be making little signs on both Facebook and Twitter so you just share those instead, I’ll understand I promise!

Love,
Meg(z)han.

DIY: Awareness Glitter Pumpkins

October might be the best month for different DIY projects for my nana and I.

it also means something else too. It’s National Breast Cancer Awareness and Domestic Abuse Awareness month too. October is the only month were I don’t mind seeing all of the pink around. I’ll wear anything pink with pride to spread awareness for it. I’m a big fan of the color purple, but the supporting of domestic abuse started just last year after different happens with certain family members, so I’ve been trying to find a way to basically show my support in both charities and I thought decorating a pumpkin would be the perfect solution.

We honestly didn’t know what we were going to do with our second pumpkin Thursday afternoon. When we were finishing gluing on the crayons onto the pumpkin, we only had six of them left, five dark ones and one bright orange. That would have made the pumpkin very interesting! At first, we were thinking of combining the left over crayons with one of our many choices of glitter, but then I got the idea about using the pink and darker purple for the two celebrations of October. It makes our pumpkins very different from our past ones and I haven’t decorated anything for a charity in YEARS so I thought maybe this would work. I talked my dad into getting the package of different colored glitter shakers at Wal-Mart last weekend. Last year, trying to do the glitter was a bit of a disaster for us! The container was too large for me to grab ahold of and shake up and down, and so we had to use a spoon to pour the glitter into the spots we wanted it to go. This time I’m happy to say that I could actually grip the whole thing in between my toes and shake it, that was actually the difficult part out of the whole thing. How to explain shake a container. You can tell I don’t do it very much.

What We Used: 

  • Pumpkin
  • Glitter
  • Aluminium Foil
  • Hot Glue Gun

Directions:

  1. First’s thing first, we lined our work station with aluminium foil, only one sheet to start off with, and then you place the pumpkin directly in the middle. Fold up the edges to keep the glitter inside the foil.
  2. Plug in your hot glue gun so it’s ready for you.
  3. Now about the glitter, there was two options as far as the tops, it had a part with little holes on it and as you move it to the other angle there is a part that gets bigger. My nana had to basically break it a bit, by placing it down so move glitter would come out of it. She did this to three glitter bottles.
  4. When the glue is hot enough, we slowly made a circle on the very top of the pumpkin and I poured the glittered out of the bottle. We used the pink first.
  5. After we got made a circle of pink, we started making small lines of glue and I poured the purple glitter around them.
  6. When that resulted in small lines of purple, we got the idea of getting a second sheet of foil and switched the pumpkin onto that sheet and used the other one with the excess pink and purple glitter and directly poured it onto the tops of the pumpkin.
  7. After doing that, my nana got creative and made a swirl of glue around the top layer of the pumpkin and any excess that didn’t make it onto the first downpour, we did it step 6 again, but this time including the white glitter too.
  8. We kept both sheets of foil underneath the pumpkin just in case anything else decides to come off in the couple of days.
Our choices of different colors to use. Was it bad that I was coming up with future uses for Christmas?
Our choices of different colors to use. Was it bad that I was coming up with future uses for Christmas?
Sorry for the pictures being so blurry, my feet wouldn't stop shaking. Irony at its best!
Sorry for the pictures being so blurry, my feet wouldn’t stop shaking. Irony at its best!
Pink and purple mixed on top.
Pink and purple mixed on top.
Ain't it cute? <3
Ain’t it cute? ♥

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.