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.

Little Moments Of Peace

All I’ve seen today is about the Malaysian plane that got shut down and that killed tons of people. I’ve also seen too many tweets about what’s going on in Israel. I swear the more I heard about the both of these stories the more I thought my own mind was going to explode. What the hell is going on in this world? I’ve had to change up my prayer list twice, I no longer have a few people here and there selected, I’m just praying for the entire world now. It has been so weird today. I kind of felt like it was Christmas again, because that same feeling of being overwhelmed came over me and I’ve been drained and that was even before I took my shower. I have plans for the weekend and my mom came into my room and asked me if I was getting excited, I can’t even lie to her. I was so out of it. Even venting and talking about it with her just made me want to scream into a pillow. I’ve even got some personal stuff going on, so that’s not helping my mind. I’m usually a very positive person and tries to see the good in everything, but I’m so tired of the sorrow and pain. Crying doesn’t help either, which is the reason why I haven’t just let myself go. Nothing seems to be working like it should which concerns me even more.

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Blondie took these two pictures of Kelso and Grumpy earlier today and yes, those are her arms too. She lifts weights for fun. Anyways, a little while ago, I was on the floor attempting to play with Silver Moonlight, I got very bored and when my mom put her back outside because she felt very comfortable inside, I grabbed one of these extra little boxes and started writing on them to clear my mind. Sometimes all you need is some good lyrics to help you realize you’re not alone in this world.

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“At the end of the day, what will you choose?
Will you keep moving on, or be forced to lose.
Look inside of yourself cause the power’s in you.
There’s always hope, you’re not alone anymore.” 

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Sleepy Ivan

My little Ivan sleeping on my bed. (:
My little Ivan sleeping on my bed. (:

It’s been a long day, but I don’t know if I’m saying that because it has been a long day or if my Advil pills still have an effect on me. I got up at 7am and actually got up feeling pretty good, I felt a lot better than I was yesterday. I wasn’t as miserable. Well after staying up for three hours I fell back to sleep. I woke back up at noon and almost fell back asleep again, but I forced myself to stay awake. Sadly though when I got up this time around I felt awful around my neck area. My mom took me to the bathroom and I wasn’t feeling too bad to have some medicine then. My mom brought in Ivan twice today and I’ve been loving my alone time with him. As you can tell in my pas posts. I pretty much told my mom, we can’t get rid of him. A cat just doesn’t pass out on my bed as easily as this little dude does every time he goes on my bed. Funny thing, he came in gripping my mom’s shirt and once he figured he was going to the bed, he let go and put his front paws on the bed. So cute!

A Dying Star

Happy Memorial Day!
Thank you to all the men and woman who have and are serving our country!

Today has been an interesting and kind of miserable for my sister and I. Blondie had put on her Facebook late last night, and said that she had broken her thumb. Well, this morning our parents found out about it and they kind of freaked out about it. Considering it’s been a while since she’s had an injury. My mom took her to the ER this morning and found out it was just strain and she has to wear a splint around it. Well, that was her exciting night and the next day. This morning I woke up after trying to go back to sleep twice and when I finally sat myself up, my mom came into my room and took me to the bathroom. When she was carrying me into the bathroom, the right side of my neck started throbbing like crazy. It felt like my neck was broken because I couldn’t move it. If you follow me on Twitter you probably read me complaining left and right about my neck. I’m so sorry, but I was complaining just as much to my mom as I was on there. My mom gave me a whole muscle relaxer and it didn’t do much for me at all, but make me loopy as crap! After I started feeling the effect of it, I got offline because I thought that was a smart choice.

I’ve been in pain the majority of the day, but then again I wasn’t the only one. My mom just gave me three Advil pills for the night and I’m hoping they work out a lot better for me. My mom thinks the pain has either something to do with my tonsils, because the right side of my throat was slightly swollen. I have been having problems with my throat feeling scratchy, but it hasn’t been too bad. I mostly had pain in my neck, back, shoulder, and my head. The other theory my mom had been maybe I just pulled one hell of a muscle in my neck. I was an all out mess today.  Besides all the pain, I did get to have some alone time with little Ivan. Once before I ate dinner and I’m not kidding, I almost fell asleep with him laying on my bed. I’ve known what cuddling meant until I had this little guy laying next to me every other day. After I ate, my mom and I went to our neighbors and met some more of my dad’s friends and my mom actually asked me if I wanted a beer. I said no. I don’t think I’m ever going to feel comfortable drinking in front of my dad. My mom says she’s fine with it, but yet this was her first offer to one. There was a storm coming in so my mom and I left early, but I actually wanted to stay and watch everybody play cornhole.

The storm we had wasn’t apparently going to be bad since both of our local channels didn’t have the radar on. It wasn’t that bad though. We brought the kittens inside for a bit. My mom brought Ivan to me and he looked like he was drunk because he was laying down on the edge on the bed with his right back paw practically hanging off my bed. It was cute, but freaking hilarious! I gave his back a mohawk. It looked adorable on him! My mom finally decided to bring in Oreo, and that poor guy panicked being on top of my bed. Ivan just chilled by my legs and I had to calm Oreo down. I climbed off my bed and started meowing and finally decided going on the floor was a bad idea, so he climbed his way back up my bed. He finally laid down on my left side of my bed and Ivan had the other side. I was laying down and I had a kitten on each arm. I felt special. Ivan is still my favorite though. Now I’m doing this and I’ve got my headphones on. I’ve tried to take two naps today and I hardly got any sleep last night, so tonight should be interesting. I’m hoping for a better outcome for today’s fun adventure!

Bullet For You, And Every Pain After That.

I was on Facebook, and I had posted a comment to one of my “friends” wall and I’m still deciding if I want to consider her my “best friend” again or not. I’m still scared of being let down and so I’ve been keeping my guard up and hoping for the best. I’m really hoping for the best, but always expecting the worse. That’s actually better than the other way around really. So when it happens it doesn’t hurt as much. Friends to me, means being there always, not when you’re suddenly bored and out of the blue decide to text me. It’s quite sad, but that’s not reason why I wanted to do this best. I’m hoping to go to my sister’s homecoming game this Friday, because mom’s got the day off so I definitely want to go and watch some basketball. I’ve turned back into a fan of it, even though I don’t know shit about it. I also kind of want to go and see who I find there and maybe find some people I haven’t seen in a while and chat with them.

I’m trying to accept different things. I’ve learned to accept things that normal people would have a hard time accepting. I can’t help myself from looking at people. They stare me, so why can’t I look back? Over the years, I think I’ve got a starring problem. I watch everybody like a hawk. At games it’s always a challenge to keep my eyes off the entrance doors to the gym. I’m curious and hoping it’s somebody I know well enough that I know they’d come see me and talk, but I usually get the axe when we’re ready to leave after the game’s over. My heart doesn’t break anymore, because I don’t even think it was even whole to begin with. People destroyed me. Maybe that’s why I turned to music, Internet and books to take me away from this reality that hates me. I don’t blame the people anymore because I don’t want them to have the guilt. One of those people who says, “I’ll take a bullet for you, and every pain after that.” That’s what I’ve turned into after all this time.