A-Z Disability Challenge | M : Do You Think You Take Too Much Medication?

This is an interesting post for me because I am very self-cautious about any kind of medication, whether it’s for depression or general pain, I am always afraid that I will become dependent of it. My mom tells me all the time that I am not, but that doesn’t necessarily help my paranoia. If I could get by with taking only Advil I would probably be the happiest, but unfortunately that doesn’t help with the muscle spasms or the really intense pain that it can cause in certain places. So, I am stuck in this mental battle of knowing I am fine with my intake but my brain doesn’t allow me to believe so.

My brilliant papaw was a Pharmacist, he went to school for it and afterwards went into the Korean war, but instead of seeing any action, he was sent to Hawaii to work with the doctors on hand. We were told lots of stories about his time there like how the fresh pineapple tastes better than it does at the store and every once in a while he would tick nana off with bragging on how he had a girlfriend there. Honestly we never really trusted him with that piece of information.

My papaw was one of the smartest people I knew, but he unfortunately had issues with pain, and one of the saddest things about this was the amount of pills and empty bottles he would have stashed around the house because he went back and forth thinking that he wouldn’t have enough or people would steal them. You really feel sorry when an older man feels the need to secretly hide medicine for either reason, because if they are anything like my papaw that after discovering three to four bottles of a random amount of pills in each one, having to be monitored by not only their wife but also their daughter who is a nurse, is very heartbreaking! I know that he absolutely hated that, but he had the last laugh because after he passed away, we continued to find bottles up until the house was sold!

There has been a lot of news about doctors and manufacturers being sued for all of the opioid addicts out there, and I am not sorry for this but instead of putting the blame on the doctors, how about you put it on the addicts. It was their choice to use it to not only harm themselves but cause many issues for patients that do not abuse their medication. My dad is one of those people, he has been on a different set of medicine recently for reasons unknown by his doctor and since then he’s actually been in more pain than I think he’s ever been in his life. He has other ailments that are causing him more trouble as he gets older and it sucks to see such a person want to be in bed or on the couch with various amounts of pillows than outside doing stuff. This mess that has finally come to life has really horrible effects for both sides.

Before I end this post, I would like to say that these are my opinions. If you are an addict or have a family member/best friend that has dealt with addictions over the years, I am sorry for you, but I truly believe that most of the general blame is on the wrong people. Let’s make this clear though, there are crooked physicians out there but some of them are desperately trying to help their patients and if they know them well enough that they understand that they’d never want to jeopardize their medication for a temporary high.

So, have you ever felt like you take too much medicine just to get through? It doesn’t matter if it’s mild or intense amount of pain either. What are your thoughts of the opioid epidemic?

A-Z Disability Challenge | L : Life Lately

Hello!

It has been a while since my last post. Thankfully we are at the letter “L” on my A-Z Disability Challenge because instead of doing what I had planned I am going to change it to a Life Lately post. I hope you are all good right now so let’s get into this!


As you may know back in June, I talked about the fact that both July and August were fast approaching and I had begin to worry about how I would respond to them since I went through a huge depression spell last year and was basically miserable. I felt like I really needed to keep myself busy with blogging, in hopes that my brain wouldn’t be reminded of that time. I had lots of cool topics I was talking about on here and then one day I just got really bored and decided that I didn’t want to write anything. I just wanted to enjoy myself for a few days–which slowly turned into weeks–and I think I realized how happy I have become lately!

Since we’ve moved into this house I have been getting out of my room a LOT compared to the other house. It was a pretty small home with tiny hallways and caved-in floors. When I officially moved in at the beginning of January, I just thought I would continue my routine of staying in my room majority of the time, but my mom had other plans. She was given this nice kitchen table and wanted all of us to use it, but I thought we would only use it for holidays, so the fact we actually sit together and enjoy our meals as one, is pretty surreal!

One of the things that I have really enjoyed is when my mom is home from work. She’ll put me in my wheelchair and let me have breakfast or lunch at the table. If she has to cook or has something else going on while I’m in there with her, I’m usually looking out the back patio doors and counting our cats. I’ve figured out that both Tavis and Felix are the ones who are out there the most in the mornings. However, if nobody is there I try to find ChiChi on the couch. She likes to cover herself with many blankets and try to get some extra Zzz’s but sometimes when I see her peeking through the blankets, I can’t help myself I like to boop her on the nose and if she gets out of her little cave, I crunch down to attempt to get a kiss, trying not to hurt myself in the process, but even if that happens I will still do it because I like getting kisses from the animals.

I like to stay in my chair for as long as possible and even keep my mom company if dad is still in bed. We have some great chats and there are times where she’ll put me to work, and I’ll mop the floors or break up boxes to put them in the trash. I can be very handy at times, just let me pour pasta inside a bowl, apparently I have lost my touch.

She likes to read Closer Weekly magazines, and honestly I enjoy some of their articles too, but in the back of it they have an entertainment inspired Word Search you can complete, and I absolutely love working on these puzzles! My papaw loved Crosswords but I always found them to be a little difficult – to be perfectly honest he also had issues as well especially if they were about a lot of the recent pop culture stuff. It was interesting because there were times where he would ask my mom or us kids if we knew what the answer was; unfortunately there was hardly ever one I knew on the spot! So, that’s why Word Searches are my thing, but they weren’t always though, I have had trouble finding the ones going vertical or backwards in the past, but I have gotten better at them now!

I have found out that I am at the perfect height to reach my foam box while I’m sitting in my push chair. At the beginning of the summer, I went back to coloring again. Before my nana moved away she gave me these crayons that you can twist to keep them sharp, everytime I use one I immediately think “where were these things when I was in school?!” They’re very handy! After two days, I grew out of that because I tend to grip them too hard, I was literally causing my toes pain as I continued so that sucked!

After Nolan had his birthday party in June, he was given a lot of new toys, and there were so much that we were given a chunk of them to keep in his room. He has a new love of Hot Wheels now so I am even more happy that I purchased that city rug for him, because he can really put it to good use with these little cars! What is funny though is that Brandon and I, we were perfectly fine without it. They move better on the wood floors and since there is so much space in the living room, they can go pretty far; Nolan gets a big kick of it. Every time I ask for a car, he’ll give me one and put it in between my toes so he loves it whenever I play with them too!

One day I got the idea about playing with these little cars in his room. At least, that was my original plan, but I ended up changing my mind when I figured I could play basketball instead. They also left this large bag of these brightly colored plastic balls, and since he has like two baskets I thought this would be kind of cool, and I was right! I love being active and the fact that I am using both of my legs to do this makes me happy and I enjoy having fun with playing again, it has become a blessing in disguise. I wasn’t doing too good at throwing them in the basket at first, but I am slowly getting better at it as time goes on! Practice makes perfect.

I am still trying to get Nolan into basketball. So, I am plainly trying to get better at my shots so that maybe it’ll inspire him to play along with me! He does know how to dunk because he has a basket at his house that he pushes a basketball, soccer, and whatever stuffed animal is nearby into it. At least he gets the idea so that’s a plus! Maybe when he comes over on Christmas, he can watch an NBA game with me? It’ll only happen if I can get him to crawl (or walk as he is trying to do it!) into my room without anybody knowing he’s gone. I doubt that’ll happen as Blondie and papaw freaks out about everything he does!

What helps you relax or get you out of a funk? Have you learned anything new about yourself or a hobby this summer?

A-Z Disability Challenge | K : Why Kids Should Be Educated About The Various Types Of Disabilities

When I was busy coming up with the letters and their themes, I was a little worried whether it would be a good idea to basically talk about children and how they view people with disabilities twice. After discussing it with my mom, she pretty much convinced me that it would be interesting to speak up on different ages, because as I’ve found out over the years, children under the ages of 5 are curious of their surroundings but they want to learn about everything! Kids in that are higher in age and in school may hang out with friends that can influence them to bully other kids. So, this is what we will be talking about on today’s post!

I remember when I was in grade school, we were all in separate classes for all of our subjects. The only time you basically got to see the other students was at lunch and recess. I knew at the time that there was one other kid with a disability, we never saw each other but only on the occasional field trips and grandparent’s programs. That was it! So, I was hardly ever around somebody that was remotely like me, until I had my surgeries in 2002.

The reason why I bring this up is because throughout my entire time in elementary school, I was basically taught to be like everyone else. I never really experienced any bullying although there was one girl who didn’t like me, but we were at least civil with each other. Anyways, I grew up actually hating to be around other kids with disabilities, because they acted differently than me and my friends–now of course, I feel horrible thinking that way but that was my mindset back then; I wasn’t like them but yet I was!

You can never really tell what a kid thinks about things unless they tell you, but when they don’t ask you questions, they will almost go through life not knowing the real answers. They will begin to seek them through their friends, and you hope that everything those kids have been taught are saying good things but unfortunately not all children are being told that having a disability of any kind can be a beautiful thing. Instead they are fearful by what they don’t understand and relying on that information to others.

I always wished that there were more motivational speakers that came to schools with a variety of disabilities. Unfortunately, I also worry if this were to happen, if they would appericate it because I know everytime we had people come in and talk with us, it would literally go in one ear and out in the other. However, there is that small chance that a few kids that enjoy learning about everything, so it could be a positive experience as well!

I think it would be useful for these youngsters to see a plethora of differences in their bodies, we are not going to look like athletes or supermodels, and it’s important to remember that at any age!

I had a thought the other night about this subject. For some reason, all of the speakers that came to talk to us were all adults. What if kids saw teenagers or someone in their early 20’s? If I saw more women and talking about her disability, I wonder if that would have made a difference because I didn’t learn how to love myself until two years after I graduated from high school altogether. It really sucks to know that not only .did I have to be away from my classmates and watch X-Men: First Class to feel like I can love being the way that I am!

When you were in school, how did you view the speakers that came to talk about the aftermath of drunk-driving or their disabilities? Do you think there should be more people talking about other topics that could be helpful to children as they continue to get older?

A-Z Disability Challenge | J : Just Watch Me

Hello.

I don’t think people will ever understand the importance of this phrase. It is like Nike’s motto, but it’s more straight forward. Whenever you say it that means you already know you’re going to do it, there’s no use of trying to talk you out of it. While the other is telling you to do something, you’re still liable to think about it and see whether or not if you need to do it.

For people with various types of disabilities, this is like embed into their brains. It’s definitely been into my head for what feels like forever. There is nothing like proving people wrong, and I always strive for that opportunity to look at someone and not necessarily say it to their faces, “do not underestimate me.” It’s the most amazing rush, as it’s second to being an adrenaline junkie, which a lot of us will put the two together and that is usually a recipe for both excitement and disaster, but we normally don’t go looking for that other part!

I think a lot of people can learn from people with disabilities, especially if they have a physical disability. We tend to push ourselves harder, because it’s not all about proving others wrong, we’re also trying to prove us wrong too. Our bodies get weaker the older we become because that’s part of life, but sometimes once we realize we’re missing out on something or losing an ability that helps us to do things can help build up our strength within and we try to change it for the better!

Here is something to keep in mind:

There is one thing that I need to speak up about first, we do have our limitations like everybody else. Sometimes those limits need to be tested of course, but it’s all about patience. Nothing you do will come to you overnight. If you’re like me, you’ll be up all night trying to come up other ways to complete something! I do not like to throw in the towel as some people would say but if none of my plans work, there is no shame in letting go. This is a harsh thing to think about, because we as humans hardly ever want to accept defeat, and when it comes to disabled people, it certainly feels like the universe is letting us down. If something is not working out for you, you can either think of it in another perspective or you have to leave it in peace.

When I lost the ability to get myself onto my bed or couch by myself, it was the worst feeling in the world because to me, that was my main thing I could do if I wanted to get out of my floor or room in general. It does continue to hurt (mentally) every once in a while, and in the last few years my parents have been losing their strength in being able to lift me off the floor, and that means I am not able to do anything on the floor like I used to. I don’t like to accept something I can no longer accomplish on my own, but I am able to look at it in a different way, because now that we’ve moved into our new house, I am getting out of my room a lot more because there is so much space between rooms. Being able to move around in my wheelchairs is as good as scooting, plus there’s a lot less pain in my back and hips too!

How are you with proving people wrong with your limited abilities? What is your mindset whenever you cannot do something that you’ve worked so hard to finish?

A-Z Disability Challenge | I : The Real Definition of the Word “Inspiration”

Hello!

Today we will talking about a rather touchy subject, and that is the word “inspiration” when it is used to describe a person with a disability. I’d also like to say a warning before we continue on with the post because I tend to get a little angry with this topic, but only for that it’s super important to show others that because we have disabilities that we do not strive to be an inspiration to anyone. So, I’m hoping you’ll understand where I’m coming from as a person and be able to respect that.

So let’s start with the definition of the word, and I used the first thing that popped up on Google for this.

A person or thing that inspires.”

The synonyms include “influence and muse” and the first things that came to mind after seeing these two words were: art and blogging. An artist can have a muse or multiple of them for he/she to find a sense of creativity that might be lacking for a piece. Now anybody that is using a platform to promote a product is a Influencer, whether they are a blogger or YouTuber, that is the term that’s generally used online. These are real and true ways to describe a person, but it says nothing for people with disabilities, because there isn’t a word for us. We don’t fit in that box and that is the one thing we’re perfectly fine with too!

For us, it’s all about adaptability. We’ve had to find ways to figure out how to do things on our own without any help. If we want to be independent this is what we have to do in order to achieve that way of life.

Unfortunately, it’s usually the little things that gives us the most praise. For me, it was always my art or being able to grab things in various sizes with my feet. When I was in school, I did enjoy the attention I was getting in art class, but once I got into middle school, if you had the talent you were basically taught to seek out perfection, and whenever I couldn’t get there in the same amount of time as my peers, it really hurt me mentally. It actually took about three or four years after I graduated just to feel comfortable to do art again, mostly painting, and I never enjoyed doing that in school so that worked out well!

When it comes to doing things with my feet out in public, it always a depends on my mood, sometimes I don’t care who sees what I can do, but there are also times where I can sense somebody is watching me. Now I don’t mind children or elderly people staring at me or asking questions, but it’s everybody in between that annoys the crap out of me because that’s when I usually hear the word often. As much as I’d like to look at them and say, “I’m not here to inspire or motive you!” I usually give them a nod or smile to them because I know they’re not doing it to hurt my feelings, but when you’ve heard it pretty much your whole life, it’s the least compliment you’d ever want to receive, okay?

So what can you say when you’re standing or watching next to someone who has a disability that you find fascinating? Honestly, there isn’t the perfect solution to this, but my advice is you could smile at them. A simple smile to a person usually makes them happy, so if you notice something a person is doing that’s “inspirational” just give them a smile as a way to say “what you are doing is absolutely amazing!” This will make that person feel so much better, because you’re not focusing all of that unwanted attention on them for something that they had to learn to do at some point in their lives.

I hope you enjoyed this post and take my advice the next time you’re around a person with a disability. Please be respectful to one another, that’s all you really need to do! ­čÖé

 

 

A-Z Disability Challenge | H : Asking For Help

Yes, I am going to try to get back to my A-Z Disability Challenge! I have been kicking myself for not doing it for so long but I think I am finally ready to start on it again. If you have missed any of the other letters, I have them at the bottom of this post so you can check them out afterwards.

This week I will be talking about the notion of asking for help. Although it is a fairly popular topic of other disability bloggers and YouTubers out there, I think it’s a good idea to have many pieces out there for people of different generations in multiple point of views to help people learn more about what they should do if they ever found themselves in a situation where they want to help, but are not sure on what to say or do at the time.

I will be firstly talking about why a disabled person will probably never ask for help. It’s honestly a mixture of things, I think the most important reason is because we don’t want to look weak. We actually love doing things for ourselves. Every ounce of independence we get, we relish in it for as long as possible. However, the day it runs out, it is a heartbreaking day. For example, after I had my back surgeries in 2002, I wasn’t able to jump back into my regular physical therapy, we did a lot of moving around and my body wasn’t used to all of that yet. Our main objective for me to learn consisted of how to transfer from wheelchair to couch, chairs and toilet. I finally re-learned how to transfer again two years after I recovered. Unfortunately I never learned how to get on my bed by myself, which was probably the biggest blow out of the whole thing. I can scoot down off, but I do not have the strength to pull myself back up anymore.

If you were raised like me, you basically had full rein on what you could do, and it made you feel “normal” for once. We love to challenge ourselves in our daily lives. and being able to learn something new is the biggest drug we can seek out. Unfortunately, some of these challenges can be more complicated with some of our limited movements. So, we can sometimes be slower than not only we would like, but for other people too. I’ve realized in the recent years is that our families are usually the ones that have the lowest points of patience of the bunch for some odd reason! They don’t like to see us struggling, especially our fathers, so they want to “help” us. What they don’t know is that they’re doing more harm, as it is better for us to learn how to complete a task than leaving it for someone else.

I do understand the reason why people feel like they should help us. Even though you should always ask that person if you can lend a hand, we will try our hardest to make sure to let you know we don’t need you. Something you may not know is that we have a huge sense of pride within ourselves. Giving up on anything that lets us be like everybody else is the worst thing possible ever. So, when we can’t finish what we started, we will reluctantly ask for help. We will not be very happy with ourselves, but at that time it will be something that needed to happen.

I have always had a difficult time accepting help. One thing that I despise is when someone close to me will automatically do something for me, when they know I can clearly do it. I love trying to find new things to do with my feet, nothing really makes more happy in life than discovering new ways to do ordinary tasks around the house or out in public, but it does make people nervous, they think I’m going to get hurt, so they try to dodge that obstacle as fast as they can and yes, it is very annoying but you have to let it go and hope for the next time. You have to realize your patience is not the same as others so in a way, I think both sides need to keep that in mind when it comes to these things. It also ultimately depends on them on if they can learn to grow to trust you with the various tasks you know or learn later in life..

Here are previous letters and their links if you want to check them out now!

Arthrogryposis Multiplex Congenita | Building Trust | Be Truthful To Your Children | Dear Disability Community | Events | Treat Your Friends The Way You’d Want To Be Treated | Long Term Goals

A-Z Disability Challenge | G : Long Term Goals

Howdy!

For today, this post will hopefully be lighthearted; the kind to make you smile with some of the things that I’ve been collecting as part of my long term goals to accomplish in the future. It’ll have the same format as the other post about my goals for 2019, but I’ll explain a little more about each one, so you will understand why they are important to me.

I like to think there’s a big difference between a bucket list and long term goals. In my Pinterest board for my bucket list things, are not very realistic. You’re wishing to do them rather than actively trying to seek them out. Now, I’ve seen a lot of people who make bucket lists and actually cross off certain ones, but not everybody is that lucky. I’ve never thought about having or even listing out my own personal long term goals like this before, but since I wrote out my other top five goals for the year, I figured maybe I’d be lucky and actually push myself a little bit to actually make a dent in my list. I’m hopeful that’s all that matters to me!

When I created this list, I tried to list them in some kind of order, but we all should know that life doesn’t always follow this rule all the time, but at least it’s organized for me to explain each one for you below!

Write A Cookbook 

I’ve always wanted to write a cookbook, between being my dad’s guinea pig for years and the beloved recipes that my nana was taught by her parents, and then papaw’s family, I just feel like this is the next step! What I find interesting is that I have these big plans of writing it and including inventive gadgets that could help other disabled aspiring cooks and/or bakers, but I still have yet to actually do anything in the kitchen.

When I was with my nana, I could convince her to let me help her mix or pour the various things into the bowl, but I can’t even do that with my own parents! Recently, I went out into the kitchen to watch my mom make broccoli and cheese soup and she would not let me do anything. In her defense, she hadn’t made it in a long time so she was basically panicking making sure she had everything and it was all coming together. I was basically there to express my cooking knowledge with her, which that part was fun, but I yearn to actually do something. I’d love nothing more than to make my parents dinner one day, but these two goofballs won’t let me!

Go To The AMC Convention 

In 2012, I found out about the Arthrogryposis Multiplex Congenita Convention. This was also the same year, I found the whole mother-load of fellow AMCers and the fact that we even had an awareness day for us! I was extremely happy because I love to talk to people, especially family members of kids that have various types of disabilities. Parents and guardians are always looking for others that may have experienced similar situations, and I enjoy being a voice to the younger generations to gain some independence and be who they want to be. This was one of the main reasons why I created my blog in the first place!

It wasn’t until 2017, when the AMC group basically announced to everyone where they were going to host the next convention – because they go to a different state every year, so it keeps things interesting for everybody that attends. Well, I usually like to look on their Facebook page on the last day to see where they will be going to, and for 2018 they were going to Louisville, KY. I was happy! I showed it to my mom, who basically told me “if you can talk your dad into it, then maybe.” Now this came out at the end of July, my sister announced to us in October that she was pregnant and that she was possibly due at the beginning of July… So, my nephew was the reason why we basically dropped that idea from ever happening.

I would love to go to the convention one day, which is why I have included it onto this post. I would love to meet other people to see how they’ve managed to do things. I also think it would be a good thing for my family too, because I’m always hoping that they’ll want to help other families, especially my sister, she’s very helpful and I think she’d enjoy meeting the siblings and basically talk to them about her experiences of being the younger sister of someone with such a physical disability. I just think it would be a great experience for all of us!

Speak On A Panel At AbilitiesExpo

A couple of years ago, I heard about the AbilitiesExpo. I know there is one in Chicago and the other is in Los Angeles. I saw a vlog on YouTube of an attendee that jacked a tripod onto the foot pedals of his wheelchair so he didn’t need somebody else holding his camera for him. I was stunned at this, and I immediately showed it to my dad, we’ve been tempted to do something similar to mine. Anyways, I think the expo is very cool! It is usually for three days, and includes small sections of different companies for fashion, wheelchairs, biotechs, etc.

I have had the same recurring dream of speaking on a panel with other wheelchair users, it usually included Tiphany Adams, Jordan Bone, and myself. These ladies are very special to me as they’re always talking about their experiences of becoming a wheelchair user, and what keeps them going and thriving! I think being able to speak to a large crowd with several other fellow disabled ladies would be interesting! We could discuss real topics like sex and relationships, and give people another outlook to women with disabilities. I don’t know if AbilitiesExpo has ever done anything like this, but I thought it would a cool idea to do in the future!

Visit England

I think everyone knows about this one. I actually didn’t have it in the original line-up, I had a totally different goal but I realized that it kind of went with the first one, so I switched it out.

I’ve talked about how much I love England, and yes, most of it goes with the royals, but I have become kind of obsessed with the overall history of the country. I love the cities, London being my favorite! Bath and York are two of my favorite cities that like to show off their impressive structures, from the cathedrals to a row of houses.┬á┬áRecently, I’ve been loving various pictures of the countryside. The villages are beautiful, they’re completely different compared to what I see here in the United States. Buildings and houses that were built in the 1600’s still being used to this day, the architecture is gorgeous! If you’d like to know all of the places I’d like to visit one day, click here.

Have A Baby

For a long time, this was the only long term goal I ever had and as the years go by, it continues to go further down the list.┬áI’ve talked about this in the past, so I’m going to attempt to keep this as short as possible.

Years ago. I did include the words “get married” before it, but I’ve sort of lost my interest in wanting to do that. Even though I have my parents and sister’s marriages to look at for inspiration, marriage as a whole in this day and age doesn’t appeal to me. People make vows and sign a certificate but will cheat on their spouses anyways. I don’t want to say because of my disability, I’d always be faithful, because I am not invincible to anything, especially my own temptations.┬á However, being attached to someone that could be the one to give a child frightens me, because they could always come up with a story that I could be a bad mom, adding to the stereotypical image of people with disabilities can’t bear and raise children.

I’ve always wanted to be a mom. My maternal instincts come out whenever I am around young children. I want to teach them how not to be afraid of someone like me. It is hard sometimes to be around my sister and nephew together, I still get fairly jealous that she has a son to call her own, but I also have to tell myself that I get the easy job as an aunt, but I’ve always wanted to do the things that she does on a daily basis. I have met with other disabled moms out there and they do ease the questions of whether or not, if it’s possible to have a child, but it’s getting to that point where I can fulfill that dream of mine that feels impossible. Hopefully one day it will happen.

Do you have any long term goals? What have you done to try accomplishing them?