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Thursday, February 22, 2018

If I could write a letter

Does a letter really make it better

Have you ever just sat and wrote a letter? One that you know will never be read? How did it make you feel? Writing has always been something that gave me some form of relief. Maybe it’s because I’m getting my thoughts out and no longer weighed down by them. That’s kind of where I am at tonight. I will say this, I honestly have no idea where this will go, but I need to write. Sometimes I feel like the most selfish person ever for needing or wanting to talk about my life. I completely understand that so many people in this world have it a million times worse than I do, and that’s why I feel so torn right now.

If only a hug could make it all better

When we are little, momma can fix anything. Just a hug and a kiss fixed the bumps and scrapes. The tears got wiped away and you ran back off to play. If you didn’t feel good, you can bet that momma would be there. Then one day we grow up and it seems we don’t need our parents anymore. We become parents and it’s our turn to fix all the aches and pains of the world. What happens when you need the comfort of that hug as an adult? Most of us would have our spouses to lean on. Some have incredible children who take on the weight of the world to care for another. Siblings and even friends can be a source of great relief. Other moments we are just completely alone.

How do we decide what’s too much or too little

Many times people in our lives don’t know how to respond. If you have a concern are you just exaggerating things, or is it more serious than you are letting on? I am facing my own inner struggles, so how on earth would I expect anyone else to really understand it? Am I supposed to act like it’s no big deal or do I need to push for better medical understanding? Truthfully all the things that happen to my body make no sense to me at all. I feel crazy saying it, so I know others must think that. Maybe I am over thinking things, but how do you not have questions when your body decides to react negatively. At what moment is the line drawn in the sand? I don’t recall anyone handing me a guidebook that says what to expect or how to deal with it.

My life was headed one way, then suddenly it wasn’t 

For eleven years my job has been more than just a job, it’s been part of who I am. I had dreams and goals and success. Now, my life is on a very different track. I feel as though I lost a part of me, and suddenly I’m left searching for this piece that’s missing. Then my health comes into play, and I have to face how very different I may need my career to be, understanding that it’s very possible I’ll never work in the same field, or if I do it will be very different. Why on earth is it so hard to let go of something as trivial as a job? How is it that I feel I’m supposed to be this person, but my body doesn’t want to allow it, or pure dumb luck gets in the way? Sadly tonight I have a million wishes, and tonight my questions go without answers. Tonight I lay my head down without the comfort or reassurance that everything will workout. Tonight, my dreams of kicking AS are just dreams, and my reality is that it might just be my defeat.

Until next time.......always try to Kick Some AS!!

Tuesday, February 6, 2018

Be the change you want to see in the world

Facing life’s hurdles 

I thought a lot about this and really went back and forth on how I felt about writing it. The idea behind this blog is to raise awareness. Not just about AS, but about the hurdles we face along the way. It isn’t that I have an issue with sharing my personal experiences, it was more about figuring out how to write and not get off topic due to my emotions. We all face hurdles every day in life. Especially in this day and age. A world full of people who have a self entitled attitude, you owe me something because you hurt my feelings. You all know what I am talking about. People are not accountable for their actions anymore. It has led to a world with more anger and hate, rejection and disapproval, worst of all everyone is offended by everything.

A world that passes judgment 

Yes, as much as we like to pretend it isn’t true, the world is full of people judging us. From what we wear, to who our friends are, the color of our skin, the area you grew up in, your past, and everything you do day to day. This judgement is passed by people who don’t bother to get to know you. They don’t know your story and they don’t want to hear it. I have plenty of friends who have faced their share of struggles, and yes, I am aware that my life was probably far better and easier than some while being far worse and harder than others. It was only recently that I even felt like anyone judged me for something I couldn’t control. This is what brings me to this blog.

My disease isn’t all that I am

Just recently I discovered one more thing that I struggled to do because of AS. It wasn’t impossible, it was just far more demanding on my body than I ever expected. For 11 years I have been certified in CPR and First Aid, that is until a week ago. I attended a course held by a member of the local American Red Cross and I quickly discovered how difficult this was going to be. I recognized the need for possible adjustments to prevent a flare of increased pain and lack of range of motion. I asked for the instructor to allow me to do a full round of CPR with supervision as required to pass, I was instantly told I would be failed. Now, tell me if you don’t watch my skills then how do you know I need failed?

Facing mistreatment 

Now I explained what AS was and why doing CPR while not observed would not be a benefit to anyone and explained I was happy to do it while she watched, but I had to consider my bodies abilities to continue through the rest of the day for doing more than what was required. I never in all my life felt like suddenly I was a lost cause because of my AS, in fact, I have always believed this is the reason I can overcome so many difficult situations. I was ignored from that point forward, refused to answer any questions I had, singling me out with clear differences in how I was treated compared to other students. I was failed, actually I was passed off and not taught. Why? All because I expressed interest in protecting my back from more pain. I asked for a little consideration because I have a chronic pain disease that greatly impacts my ability to move normally. From day to day I never know what I’ll get. This somehow made me incapable.

That’s not acceptable 

I’m sorry, but I can’t be okay with that. Yes, this time it was me, it was my disease but none of it is acceptable. I don’t care if it’s the young man at the store who doesn’t look like he needs the handicap spot, or if it’s someone who is clearly different than you because of their handicap and definitely not if it’s because your own ignorance makes you think someone is clearly different than you just because of how they look. Not one bit of it is acceptable. I am disappointed in the things I see coming from just about everyone. I see it regularly at my job, and it’s disgusting how much it’s in social media.

Be the change you want to see in the world

Yes, my if you want to use the term “disability” is AS, well, that and maybe putting to much stock in people genuinely treating others with respect. Yes, I have made my fair share of these mistakes, I’m far from perfect. I don’t write because I’m seeking attention, I write to offer some glimpse of hope to those who might be worse off than me. I can get a million negative responses and that one needle in a hay stack gives me strength to do it again. My thoughts might not change the world, but all of ours can! Put those thoughts into actions and words, be the change you want to see in the world. I never won’t anyone to feel like I have because I have AS, that’s why I lead a support group, why I blog. I also think everyone deserves fair and equal treatment no matter what.

AS is my diagnosis not my disability 

Yes, sometimes I struggle to shave my legs and put on shoes. Other days, I can clean my entire house and possibly run a marathon. Well, maybe that last part is in my head! My point is, I have AS, and yes I have had to accept that I might need help, or that I just can’t do something. Maybe I just have to adjust how I do it. None of this is seen as a disability in my eyes, this was my gift, this gave me passion, drive, strength, dreams, friends I never would have had otherwise, and countless opportunities. Nobody gets to make me feel like I don’t matter because of this. Yes, one door might have closed, but many others opened. I took an opportunity to turn life’s lemons into lemonade. I will hold my head up high and like always.....

Kick Some AS