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Saturday, December 12, 2015

My Chiari Malformation Diagnosis and Running & Life

It's been a really long time since I posted an update on my blog. I came from a place where I was inspiring others and felt led to spend more time inspiring my children, raising them up and gaining a greater aspect of this life. I took on the challenging, yet blessed adventure to home school my three children.  I made the decision that Running was not who I was, but a part of who I am. I am, you are, more than what our body says. We are more than what our body looks like. We are more than what is defined my numbers, scales and social acceptance.

I had personally realized, for me, a distorted perspective on what was most important in this life, what I could take with me and give to others, my LOVE!

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Whatever the World throws at you , Take it On!



I didn't know it at the Time, but Chiari is what stopped me from training for an ultra, instead I did what I could, I climbed my first Mountain! with my symptoms it was not easy! But I did it!
 





I was Diagnosed the Summer of 2015 with Chiari Malformation. I had been experiencing a myriad of neurological issues. After a lot of sickness over the course of 2 yeras, I was diagnosed with Chiari. It made it all make sense. I then began a journey to heal my heart, soul and body even more. At this point I have spent major chunks of two years with a different array of neurological issues from eye shaking, buzzing in legs, arms, neck pain, swallowing issues, head pressure. I thought for sure I had a brain tumor or MS, but it was Chairi. I won't need surgery as so long as my symptoms stay manageable. What was a stressful time with Doctors, I have a new team of specialist sand doctors on my side to help me in the future with my health. For that I'm so grateful. It was not easy being sick, it was hardest knowing something was wrong but not knowing what, it was hard, but I'm blessed in the end. To see that God's Grace was there, that he was always with me in my suffering and that I was a prisoner not of despair but of Hope! That's my Jesus!


 
What am I left to do? Fight and Keep Dreaming!
 
 
 
  I have some tips that I have discovered for me in this Journey with Chiari, forgive me if they are different from what you have read, what you have been told. Forgive me if in this short period of time of mourning, grieving and finding my way to Hope that I'm remotely wrong on anything. But this comes from love.


1) Your Story is your own. Don't make someone else's story yours. This can cause a lot of unnecessary fear.

2) Don't let a lay person's suggestions take place of a  Doctors. Online community forums and chat groups, I'm sure can be great. But what I saw constantly is a list of to do's and not to do's. How unfair to put such rules on people, when most doctors don't even do that.

3) Listen to your body. Don't listen to someone else's. Rest when you need to. Don't beat yourself up for it. We have enough to endure, guilty feelings are the worst weapon against our own selves.

4) Don't ever let a Doctor tell you nothing is wrong when you KNOW something is not right. Fight, Fight, Fight for answers. Don't take second best. Take the best. Find a doctor that respects your decisions, your desires for treatment.

5) Not every Chiari person needs surgery. I rarely see anyone sharing how they have NOT had the surgery. Share and show others that you are fighting without the surgery, not because you are braver, not because of anything you have done, but because Chiari does not have to take everyone under the scalpel.

6) Keep hope alive, don't get lost and desperate, don't struggle alone. Find  support, someone, a group, someone that you can talk to. They can't take it, but they can help carry the load.

7) You are NOT Chiari. I know that firsthand. If you have Chiari, it does not have you. Fight to live a life where you forget you have it. Don't let it control your day, your thoughts.

8) Fight to not let others and what they don't understand to deflect their thoughts, judgments onto you! There is no right/wrong way to live and exist the way you know how. One day, it will be easier, or we keep Hope!

9) Don't ever give up. The Apostle Paul said it was better for him to pass from this life onto the next. But it was better for others if he stayed. That truth is for you too. You may feel worn out, tired and feeling hopeless, but its' better for others if you stay. When you feel this way, the devil wants to come and even take that from you too. He would love for you to feel that others are better off without you, don't fall for that lie. Want to know why? Your breath, it's there because God loves you, he has a plan and purpose for you! Let God. Let God dictate your days and hours left here on this Earth.  Your Breath = Life Given .....let's make a plan to Live it!

10) Stay active! Don't let Chiari rob of you staying fit, healthy. I am back to running, I'm back to chasing some goals, because it's better for me to do that. It's better to have hope for goals, dreams then to stop dreaming all together. Run Your Race, I'm running mine! Don't let anyone cut in on you! I'm not!

11) Remember your Close Family that live with you. When you suffer, they do too. Think about the impact on them. Celebrate their support, draw them close and never let go.


I'm chasing a dream....will I get there? I don't know! It will try, I will hope, that's all I can do! Fight, Hope, Chase, Be More than a Conqueror, I can do all things through Christ. The Journey will be worth it!


 
 
 
Thanks to my Best Friend, Lover, Husband for Eternity for all his support and Love ♥
 
Thanks to my Kids, who are by all means the purpose why I do anything that I do! For them! ♥

2 comments:

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