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!
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.
When I started this blog my aim was to try to stay focused, but, my mind pulls in so many different directions! I think I’ve decided that that’s exactly what this blog will be. It will simply, be. I will allow my mind to pull me in whatever direction it wants to go in, and write about whatever passionately takes hold in my mind, in that moment!
I’ve been contemplating life for the past couple of years. I feel like I’ve grown a great awareness and a very deep connection with my God. He talks to me and he guides me and my intuition has never been stronger!
I’ve learned that I have to get out of my own way if I ever want to accomplish anything! I have never felt more free, more content, more fulfilled in my life, and I’m weeks away from brain surgery.. it is crazy the way things seem to just fall into place, the obviousness of divine intervention, the peace that I feel most days, even whilst in the most excruciating pain I have ever experienced, has cemented that old adage that everything in life happens for a reason. Every heart ache, mistake, missed oppurtunity, all bring me to right here, right now, who I am in this moment.
“This is me. And I am in love with her!”
I have learned to say no to people, people that I love and care about, and for a people pleaser which I have been my whole life, that is extremely hard to do! I stand up for myself now, the way I always stood up for others. I have learned to love people where they’re at, but, I now know that, that does not mean I have to allow them to treat me badly.
I choose to get up each day and believe that there will be good in that day, no matter how I feel and no matter what is happening.
I have allowed God to work in me and make me the person He created me to be!
Getting out of my own way has been the best thing I could have ever done for myself! And it has prepared me for what is coming soon. Every trial, every ache every pain, every hardship, has made me who I am and has gotten me ready for what is to come.
I know there are quite a lot of pictures in this post but you see, I’m very visual. I love the brightness in the color of life and if I can bring a smile to at least one of your faces, then my job is done for the day.
I want to share what Joy I have and give people hope, that no matter what you are going through, you don’t have to be miserable, you don’t have to be ashamed, you don’t have to feel guilty. There is always someone who cares, even if you don’t know them, even when you feel like there is no one. I care, even when I don’t know you, or don’t like you, or really don’t want to *laughs* it is exhausting, but, I always care. I was made that way, and each day I will embrace it more and more.
Be the most authentic version of yourself! Life is to short for anything less!
You are either moving
Sour, and standing still
Life if an endless journey of growth and change
Get up on your game
Grow, learn, change!
You use it or lose it
There’s still time so get to it!
You can do it
Put yourself in to it
Or go sour…
Effervescent shining light
Loveliness unfolding in broad daylight
Scarcely huddled under sight
The pinks and blues the whites of sky
Perceived differently somehow
Through pain filled eyes
Glory hidden slightly when life was good
So many things misunderstood
Touch of the divine
The closer I climb
This narrow path I’ve chose
The pressure filled
Deep pain instilled
Not what one would have chosen
Glorious climb towards the Divine
Endless opening of the mind
When I was a child I would spend every weekend with my grandmother. It was my favorite part of the week. She would take me to Publix and buy me carrot cake and let us pick what was for dinner my sister and I and just all-around dote on us for a whole two days. I remember sometimes at night I would have terrible pain in my legs, and she would rub them, and try to make me feel better. She told me they were just growing pains, and I remember wondering why growing hurt so bad. I don’t fault her for not knowing the pain I was having was actually a sign of the condition I am now diagnosed with, Chiari malformation. My skull is not big enough for my brain. I look back over my life and I see the signs so clearly. The pattern is so plainly insight now, with each new level of pain I would be in agony and then I would get used to that level and it became just another part of my life. Until the next new level of pain would come. I would wonder what the hell is wrong with me. And then I would get used to the pain again. I’ve done this for 33 years, until a few months ago when I simply couldn’t get out of bed.. when you think about it almost every type of growth hurts at first. Growth pushes us out of our comfort zone. It gets us ready for the next level. It makes us wiser, and lets us be the most authentic version of ourselves.
I wish I was pretending about the pain that I am in. I wish I didn’t feel as tho I’m trapped in my own skin. I wish I really was being ridiculous in jest. But I promise you this pain I’m in is really quite the pest. It tries to steal my joy and fill me up with doubts. I drain a lot of energy keeping the pain from seeping out. I can not run away from this. I live it every day…I’m going to have brain surgery. There is just no other way. Chiari malformation. 1-1,000 are the odds..this makes me strangely special, but please, hold your applause.
This mask I wear…it’s falling off. Reality setting in. The fear…the anxiety…it crawls beneath my skin.
I slap this smile on to convince ME I’m okay… I’ve got friends “by my side” but it sure doesn’t feel that way… Their fault? Or mine? Should I keep saying I’m fine?… To many decisions to make..
Holding it all under this mask for fear that I will break.
I’m surprised with me, my anxiety, would usually be in out of control..
Strangely I feel a sort of peace in my soul..
I wear this mask to hide my fear..but who am I hiding it from?
I like to tell myself I’m hiding it from my husband, mother, daughter, son..
I’m finding revelation and its hard for me to see…because quite possibly the person I’m wearing this mask for…is really me..