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Wednesday, November 29, 2017

Pain can only lead to strength

 Don’t let it defeat you

I won’t sugar coat anything, when I write it’s raw and it’s real knowledge from my life. That being said, some days just flat out SUCK! I most definitely get knocked on my butt my share of days. I however have a choice and so do you. You can choose to get defeated or you can get up and Kick Some AS! Yesterday was one of the hardest days I have had in a very long time. So I stopped what I was doing and I rested for a bit, put a pain patch on and then went to work living my life. My life is far from what some call normal, but I live it the best way I can because I refused to be beaten by this.

Make your  HLA-B27 Be positive

What does that even mean, make your HLA-B27 Be positive? Let me first clarify that to those who don’t know, HLA-B27 is the gene connected to AS (Ankylosing Spondylitis) and you absolutely do not have to have the gene to have AS, and you can have the gene and not have AS. I am HLA-B27 positive meaning I do have the gene and of course I have AS as well. When I was struggling with my day yesterday that phrase make my HLA-B27 be positive came across my mind. The term positive is supposed to be a good thing, I think we can all agree that being diagnosed with a chronic pain,  disabling, life long disease that can’t be cured is the farthest from a positive thing.  That’s when I realized that I have the power to make it a positive thing and I have done just that.

Kick Some AS

Kick Some AS is much more than a hashtag, or just a term I toss around lightly. In the past 2 years of being diagnosed I have seen many ups and downs. One day not long after diagnosis I was out hiking this massive beast of a trail up in New York. I kept saying to my self “man this trail is kicking my ass” but I didn’t give up, and I didn’t let the fear of unknown, or the fact that I was alone defeat me, I was going to accomplish this goal. Once I made it to the top, it was all down hill from there and that’s the easy part, so I felt better than I had ever felt. I was bruised, bleeding from a few minor scrapes, sweating horribly, hungry and tired, but I made it! That’s when I realized that if I can do that, I can beat this thing too. Kick Some AS became my motto and began my undying passion to bring others support and comfort when they might be struggling.

Anky What

When I first heard the phrase Ankylosing Spondylitis from my Doctors, I said just that Anky what? Then when I began telling family or friends they said the exact same thing. My children when I came home the day I was diagnosed and told them what I had, they immediately said “Mom has a prehistoric disease, she has ankylasaraus spindlefiber.” From that day forward that’s what they have called it, my dinosaurs disease. I was clueless and began a relentless research of AS. I discover a non profit organization and began the work of becoming a voice for the AS community. I’m my State there was not a support group, so I completed an application to become the leader of  the Spondylitis Association of America’s first leader of a support group for the state of TN.  Having my dinosaur disease has turned into something hugely positive. I have been able to spread so much awareness, learn from others and from myself. I am a better, stronger person because of this, and that is why I can say my HLA-B27 is Positive. That is why now when I encounter people, that don’t look at me confused and say “you have Anky what?”

Self help is the first step

I only needed a year to figure this one out, well I suppose you could say 19, because I refused to do anything to accommodate the way I felt prior to diagnosis. Mostly because people kept saying I was just crazy or depressed. I’m no longer ashamed of when I need a little help. I am super independent, so allowing anyone else to help me in anyway has been very hard. I understand more than ever that I must take care of myself first. I make myself rest when needed, I ask for help and I adjust my lifestyle to fit my pain level day by day. This allows me to participate actively in my kids, families and friends lives. I can work, maintain a relationship and have the energy to keep on going to build Kick Some AS into something wonderful. I’m not afraid to tell my Doctors what I need or how I feel.  If I didn’t do this, everything in my world would come crashing down. I am the only parent my children have, so I don’t have a choice, and I refuse to let my kids think this is something that will prevent them from achieving their dreams and goals if they are ever diagnosed with it. I’m a spoon yielding warrior in battle and my blue ribbon hangs proudly as a badge of honor because I get to help others help their self.


Now get out there and Kick Some AS

Friday, November 17, 2017

Someone asked me how I do it, I said I wasn’t given a choice!

Inspiration comes from the strangest places


It took me longer than I planned to sit down and write this time. About two days ago inspiration struck at the strangest moment. I was getting dressed for work and it just really sank in how difficult that task was. I know I have talked before about those simple task we do everyday, however I don’t think it will ever be something I will get used to. It’s just not supposed to be that hard to complete the daily task of life. It is much more than just cutting toe nails, it’s putting shoes on, shaving my under arms, writing, typing, putting on a seatbelt. My body simply does not want to cooperate.

36 Going on 96

I know, you are thinking I must be exaggerating, surely it’s not that bad?  Yes and No! Obviously I don’t think I can be compared to someone in there mid 90’s, but some days it sure feels like a few of those lucky enough to reach that age are doing way better than me. I actually asked for a shower chair and a claw grabber for Christmas, and not because I’m lazy and short. It just really came to my attention that I may actually need to adapt a few things to better work with my bodies limitations. Let’s face it, I’ll never get any better so all I can do is make things as easy as possible for myself. If this means sitting down when I get dressed or shower, I’m all for it. I will take the easy road any way I can in order to keep blogging as long as possible. Then it will be time to vlog or use voice to text.

To Vlog or Not to Vlog

That is the question my friends, should I go ahead and start doing some vlogs now? Should I be doing that in conjunction with my writing? That’s probably not a bad idea, and I need to work on my social skills a bit anyway, if I am going to lead a support group. Bet you would never guess I have social anxiety and truly hate facing new people and new things, especially when they involve talking to new people. All of these things have not just impacted me in a way that’s made my life more challenging, but it’s also been the greatest blessing. It is forcing me to become comfortable with my less than perfect side, pushing out into the social world and causing me to spread my wings a bit. I have been blessed with the opportunity to turn a bad circumstance into a wonderful learning and growing experience. So next time you get down on yourself, think of the positive that you could make. Lemons=Lemonade right? Until next time....

KickSomeAS

Thursday, November 2, 2017

My AS was meant for more

I have wrote many times about what symptoms I have and what this process has really been like. Most of the time, I am still putting on that brave face. I act as if it's all okay and I  don't need anything. I try to be real and give you the raw truth, but it's hard to be that vulnerable. The fact is that it is the biggest fight I have ever fought. Each day is a battle and some days I lose! Many times I lay in my bed because I don't have the energy to do anything else. I am not lazy, I am not giving up. I truly don't have the strength sometimes to get out of bed. I toss and turn hoping I can sleep, but sleep never comes and the pain never stops.

Every minute of every single day for 19 years of my life I have felt pain, years ago it was a minor ache that I could pretty much ignore at all times. It began to increase and I wanted someone to comfort me, rubbing my sore body soothed me just a little, heat became a really good friend of mine, as it seemed to dull the pain enough for me to sleep. Then one day it just became impossible to ignore anymore. I needed to seek medical guidance on what was causing this pain. Little did I know that it would be years of stressful Doctors appointments filled with no answers, a course of constant changing medications that did not work but made me sicker, and no motivation to continue fighting. I gave up, I had lost hope that anyone would ever find the answers.

As the years went by I found myself dealing with increasing levels of pain and more symptoms showing up. I wondered over and over why this was my life. I wasn't the person I wanted to be and I wasn't sure I ever could be. I felt lazy and unproductive because I never wanted to do anything. I wanted to just be able to relax as much as possible. This meant no house cleaning, or hanging out having a good time with friends and family. I shut everyone out and I avoided everyone that I could. I felt like nobody would understand. Some of the people in my life already believed I was making up the way I felt.

I created kicksomeAS because after my diagnosis I had an answer, I knew why I felt so bad. I became determined the more I learned to not let this disease take over anymore of my life. Sometimes I still have really bad days. I can spend hours just trying to make myself build up the strength to get out of bed on my days off. Something I have figured out along the way is that I can't just force myself into everything. It is just as important for me to let my body rest and recover as it is for me to fight for a life I can live everyday. I will be the first to tell you that I still ask that question, why me? Why is this my life? The more of my heart I put into kicksomeAS the more I believe that I can make a difference.

Did you know that there's not a single support group in the entire state sponsored by an AS non profit organization? How about this, did you know that The Spondylitis Association of America is at the forefront of research, education and awareness? They do not receive any government funding so they rely on the donations of others. They use the money they receive to do fundraising, research, and spread awareness, not to line the pockets of some CEO. I have had the privilege of getting involved with this organization to begin the process of making kicksomeAS something much bigger.

I need support from all of you, so if you read this, if you follow what I post, then please take the time to find my social media pages and follow me there as well. If you live in the Tennessee, southwestern Virginia, Southern Kentucky, Southwestern North Carolina or Northern Georgia area and cant find anyone near you that offers a good support group than please feel free to contact me. I am available to talk, or offer any assistance I can. reach out to me by email at kicksomeas@gmail.com find me on istagram under kicksomeas facebook group Kick Some As as well as following me here at k.kicksomeas.com and of course be watching for me to post about the KickSomeAS support group that I will be starting in January of 2018.

I look forward to building kicksomeAs into something big. I am working on all the things I need to begin fundraising and of course will always be doing my part to spread awareness. I have learned that I am not alone, there is someone out there who understands exactly what you are going through. I never thought for a minute that I could use my diagnosis for so much good. It is very empowering to know that I can take control and make this life anything I want it to be. When those days come around that I am struggling to get out of bed, or new symptoms pop up and I sit waiting for more answers, I remind myself that I must kick some AS. I have gained so much strength because of that. I don't let it rule my life, and you don't have to either.

Join in on the fight to #kicksomeas and become a part of something great. I look forward to growing and learning with all of you. Now get out there and .....

KickSomeAS