Chiari Malformation AwarenessΒ 

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.

Keep fighting the good fight!


Breaking Point

We stay quiet too long, say we’re fine too many times, and put yet another person in front of ourselves we mustn’t keep doing this! Living life this way is exhausting! Crushing, at times terrifying… who’s going to take care of me? I’ve spent my whole life taking care of everyone else.. now who’s going to take care of me? they don’t know how to they’ve never had to really do it before now.. who’s going to take care of me? I’m at my Breaking Point feeling, the darkness creeping in, who’s going to take care of me??

Toxic Family

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. 

A drowning person will desperately, and blindly, grab on to anything to stay afloat. Throw them a lifesaver, and keep your distance.

Chiari Malformation Awareness Month is September

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! 

Save a life! Spread awareness!πŸ’œ

After Chiari SurgeryΒ 

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. 

Day after surgery selfie. My family said I looked terrible directly after.
It appears that I didn’t lose to much hair πŸ‘β˜Ί

I was released from the hospital two days after surgery. I never vomited once!πŸ‘ 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.

I’m so thankful to be home!! πŸ˜ŠπŸ’œ

One Day Until Surgery

Tomorrow this will be no more…

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.

Humour in times of Anxiety

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.

$1.07 can really go a long way sometimes

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. 

*ding ding*

My Mid-Morning Breakthrough

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! 

No more analyzing. No more. Ive wasted so much time in my life over analyzing, overthinking. So much has happened so recently, so much change, in such a short

The original intent has been completely lost and this has become my place, this blog is for me, and if somehow it helps someone, anyone else, icing on the cake! 

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.

After nearly a life time of feeling like not enough and too much at the same time, I can honestly, joyfully say, 

“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 don’t waste my energy on the petty things that I used to think were so important. 

I am uniquely and wonderfully made, and so are you!

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.

In all the pain I am in today, I feel like I have finally fully decided to be completely and totally, unashamedly, undeniably, me.

Be the most authentic version of yourself! Life is to short for anything less!

Feeling Ill Today

I knew it was only a matter of time. I’ve been pushing it to the back of my mind, but today it has caught up with me. I don’t feel very well you see.. my head it hurts, my face feels full, my stomach it churns.

 I just want to be whole

I guess I had too many “good days” in a row…

The weather looms dark overhead. I wish I could have stayed in bed, butI can’t lay back on this blasted head! Alas, it is too full. The pressure is too great.. maybe I should meditate.

 I feel ill today and it won’t go away, it weighs heavy on my soul

The pain looms as Thunder booms with dark skies overhead oh how I wish I could find comfort in my my my head.