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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

3 comments:

  1. Thank you for posting this. I am learning more about AS and really in the struggle of my life right now. I had no idea there is no assistance for research.

    Honestly, I am not sure when I was diagnosed, but my doctors have always treated me like a unicorn. The only reason I'm reading a bout this after 29 years of being ill, is my doctor retired and the new doctor who took over casually mentioned "my AS". I've been angry, for thge past week just trying to wrap my head around why I was not told. My original doc said it was fibromyalgia but I alea us felt there was more to it.

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    1. There is just not enough knowledge about this and other similar types of diseases. I truly enjoy being able to speak about it and create awareness. I look forward to being able to do so much more. Please feel free to reach out to me anytime.

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