So why can’t I write? Why am I blocked and filled up with fright? Why am I worried of judging from people I don’t know?
Oh my dear Lord when will I let this go?
Chiari malformation what a bitch you are!!! You see, before you swooped in, I had gotten so far! I had goals for my future and accomplishments were made. I was working full time, money being saved. Studying. Studying finally. That was a big thing you see..
And finally, crippling fear was finally not ruling me.
Years spent building confidence you see, my childhood wasn’t kind to me and then the diagnosis and the surgery and anxiety swoops in and consumes me…
I feel at war daily, and this voice keeps saying to me ” it’s to late, you can’t do it, there’s no point”
I must break free
I must break free
I know I was created with greatness in me.
I must break free!
And why does everything I write sound like poetry? I can’t seem to get the rhyming out of me 😀😅
I was thinking as I was rollingthroughthecarline at my son’s school this morning, watching all the teachersstandingattheircarlinestations retrieving our children from ourcars so that they can teach them and take care of them all day for us and I started thinking,wowthesearetherealrockstars!
There’s a saying that goes something like this, “If you can read this, thank a teacher”
Thank you teachers out there for all the wonderful things you do!!
You are the real stars, the everyday hero’s of our society, and you definitely do not get the credit you deserve!
Trying to explain my chronic illness to people can be tough.. in layman’s terms, my brain is falling out of my head. Now, when you tell someone that, they tend to think you’re joking… because really, have you ever heard of someone’s brain falling out of their head??? Until June 27th 2017, I hadn’t heard of it either. So, explaining a chronic illness that you suffer from, to people who have never heard of it, when you yourself have just learned about it… is terribly difficult to say the least. I have Googled and Googled and Googled…
What I have found from all my researching, and my own personal experience, is Chiari malformation affects every part of your body. This is partly because the cerebrospinal fluid flow is restricted. This causes problems with nerves, the way your hands work, the way your legs and feet work, it affects speaking and thinking! The fluid is supposed to be flowing through your whole body freely, cleaning the garbage out of your brain so to speak… I couldn’t tell you how many times I have lost my train of thought right in the middle of a sentence, in a conversation that I myself started.. it is embarrassing, it is humbling, especially to be 34yrs old…
Life has changed drastically and don’t most out of nowhere having been in pain my whole life I just assumed that’s the way it was supposed to be. Boy was I wrong! I’ve ignored the pain as best I could my whole life because it always got in the way of all the things that I wanted to do! Well, unfortunately I had to surrender to the reality of my illness, the one I did not know I had until this year, on August 23rd, and have brain surgery. I woke up to find I had many limitations… but I also woke up to find how strong I’ve really been this whole time! The willpower that I possess inside of me! Something that should have knocked me down years ago, I fought through! I will never stop fighting Chiari! And Chiari will not beat me!! I may have to live with this for the rest of my life but it will not be my life! Chiari will always be a part of me and there’s nothing I can do about that, but I don’t have to let it tear down and break the person that I am.
Whatever you may be going through, you are braver,stronger, and more resilient than you think!! Don’t you ever give up on yourself! You never really know how strong you really are.
Try as you may, try as you might, you will find in life that there are some people you just can’t make happy. No matter what you do, or don’t do, say or don’t say, you can’t make them happy. And, the reason you cannot make them happy is because it is not your job. They choose not to be happy. All too often these very people are your own family. Whether they be in-laws, or blood, you will find some people are just best to stay away from. They are poisonous. They are so unhappy with their own lives that they choose to drag down anyone around them.
Please spread awareness! Chiari Malformation, also known as Arnold Chiari Malformation, is a rare brain disorder where the skull does not form big enough to hold the cerebellum. It is related to spina bifida, that is how serious Chiari is. It reduces the flow of fluid throughout the brain and body. It can be extremely debilitating, worsening as time goes on. Sadly, there is no cure for Chiari there are surgeries to help ease the pain and pressure that the brain puts on the spine, but there is no cure! So please help raise awareness! September is Chiari Awareness Month. September is the month for all invisible chronic illnesses! Wear purple! Google it! Research it! Talk about it! If you are a doctor or nurse, or in the healthcare industry at all, please learn about it! There are so many people who are misdiagnosed!
Surgery was Wednesday August 23rd, and as you can tell I made it. My Neurosurgeon said it was a mess in the back of my neck and head, just as he thought it would be.
I was released from the hospital two days after surgery. I never vomited once!👍 That was surprising for all of us including Dr. Koebbe, he had warned me that vomiting would more than likely be the worst side effect after surgery.
My movements are limited for a while. No bending, twisting, or squatting. I’ve got a lot of adjustments to get used to.
So here we are, one day away from surgery. I’m running around the house putting Post-it notes on drawers and cabinets, because, we just moved about a week and a half ago.. My son and husband have no idea where most of our stuff is.
I must admit life has been extremely hectic, but, I’m remaining as positive as possible, because, I know my emotions affect my family…
I am terrified!! Yet I walk around with a smile on my face.
Tomorrow, the back of my head will be shaved and cut open. So today is the last day before my whole world drastically changes.
Chiari is a monster. It torments you. Some days it makes you believe that you’re okay and you begin to try to live a normal life like you did before it got so bad and out of the dark it’s swoops in and knocks you down.