Real in-depth honest conversation, the type that’s hard to come by, is the type of conversation we should be having with the people we care about. More often than not this conversation is never had and is replaced with the assumption that people should know what we want, and how we want to be treated.
Sometimes, we fall in love with the idea of a person. I believe this is where our disappointment comes from. We tend to fall in love with our idea of a person and not the reality of that person… so we become disappointed when they don’t meet our invisible and unspoken standards. We feel mistreated and uncared-for simply because of our own expectations.
Without expectation there is rarely disappointment. Now that doesn’t mean that you should aim low and accept whatever treatment people give you, but what it does mean is you should not expect a person to know your thoughts and feelings without you communicating them, and vice versa.
With proper communication almost all conflict can be avoided.
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.
I am going through a whirl wind of emotions. With surgery about 4 days away my mind is all over the place. Humour has always been my place of refuge; sort of like Chandler on the epic series Friends, comedy, humour, they are my armour.
Walking through my local dollar store I found this little gem 😁 oh the smile this brought me is priceless! I’ve warned my family to watch out, now I’ve got a service bell.
Between packing for our extended house sitting adventure at my hubby’s grandparents, school starting in a few days, and my surgery that’s 16 days away… I just don‘twanna today. Iamhurting. Iamnauseated.Iamexhausted. AndIamfullofanxiety.