I logged on to my YouVersion Bible app this morning to find today is the hundredth day I’ve connected with God. This may seem like a small silly accomplishment to some, but today marks 100 days since I decided to put myself first. 100 days since I decided to completely stop pretending for other people. I am not ok everyday, and that’s ok.
I’ve been almost completely cognitive for 100 days straight lol. The first 3 months after my decompression surgery was rough. I struggled every day to try to live my life like I did before surgery. I struggled to pretend for friends and family. I exhausted myself, was angry with myself. Today marks a hundred days since I’ve blamed myself for this, because Chiari malformation is not my fault!! Over the past 100 days I’ve stopped spending so much time wondering why almost everyone left me when I needed them the most, and I’ve begun focusing on the people who stayed and reminding myself everyday that I am stronger than even I know! This was NOT my fault. I was born this way, and I don’t have to apologize for that. I also don’t have to make excuses for anyone else; what a freeing revelation! I’m only responsible for myself and my own well-being.
This journey with Chiari malformation (or any chronic illness for that matter,) is lonely. That’s the part no one really talks about. And the vast majority of us don’t want anyone feeling sorry for us! We would just like a little consideration and a little compassion.
You see this journey is lonely, and it’s rough, but if you decide to focus on the right things, the little victories and the small growth. The day you decide to focus on finding the strength in the weakness, is the day you will begin to find your true self. You will begin to find freedom.
The healing power of pets is real. While dogs are great in their own right, do not limit your choice of therapy animal to just a dog. You may find you’ve a better connection with a cat, or even a bird. I found an unlikely therapy animal in my Russian tortoise, Miss Turtle. She’s great! We’ve figured out how to communicate with one another, and I just love watching her excitement when she’s asked if she would like to go outside.
I’m fortunate enough to have found comfort in two of my pets, and as fate would have it, my two good buddies enjoy each others company as well.
The healing power of pets is real. Their love is unconditional and pure. Suffering from a chronic illness, disease, or mental illness can take a toll on the quality of ones life…the simple act of adoption can change the course of your life for the better. Make yourself move outside what ails you as much as possible! Live the life you were created to live. Remove toxic people and things. Add in healthy habits and thinking processes, and sprinkle in the love of a rescue animal, you’ll be well on your way to the happy existence you were meant to enjoy!
It has been 6 months since my surgery. Sadly, I report… I do not feel better. To be honest, I feel worse. I feel worse than I did a year ago, before I even knew what Chiari malformation was… the nerve pain in my limbs is returning full force as is the burning under my shoulder blades and on top of that here is the new nerve pain throughout my head. I’ve got some form of a headache/migraine everyday. PT seems to only be making things worse. We are trying to remain positive but, I fear a trip back to the neuro is imminent.. I do not plan to have a decompression surgery again unless it is absolutely medically necessary. It is hard to admit, but I am more than a little angry about this whole situation. I know, God’s will and plans, not mine, but sometimes I can’t help but wonder why…why does my son have to watch this happen to his mom? I’m supposed to be strong, my family shouldn’t have to watch me struggle!!! Why can’t I just beat this? And Bless it all, why doesn’t positive thinking just fix this?!*sarcasm*
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 😀😅
That curl up and die feeling is not foreign to me, nor am I able to successfully evade it every day. As it should be plain to see, that is not a comfortable place to be. Just curl up and die the demons will cry. Not I I reply, not I!
The scale of my pain, is to hard to explain, and harder still to understand. The body I live in was not a choice I was given. Who would choose to fight a battle daily?! Who in their right mind?! The choice was not mine! Yet here I sit, stuck with this shit!
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!