So here I am 8 months after surgery and 2 + weeks after having stopped taking Lyrica, it’s hard to explain how I somehow feel better and worse all at the same time 🤷 I highly doubt I will ever take Lyrica again. I know it may work for some but I found it was not working for me. Sadly most of the symptoms I had a year ago have returned; added to them is the feeling of an ogre squeezing the bottom left side of my head all day long..
I just try to remind myself that my CSF flow being severely blocked was reason enough for the surgery and I guess if I really had to weigh it out honestly I do feel better than I felt in August of 2017.
Hmm 🤔 maybe had I been able to lock myself up in a safe little box away from the world while I was recovering things wouldn’t have felt so rough 🤷 but life keeps happening no matter what else is happening.
I’m learning to adapt, as I always have, that’s what a chronic pain Warrior does. I’m determined I’m still going to live my life!💪 Chiari has had me for too long, it’s time that I have Chiari.
God put it on my heart to write this today. I hope it reaches it’s intended audience!
Taking the time to listen. Listen to the silence. Listen to the whisper in your soul.
The world continues to grow busier and busier, so how do we learn to listen?
I’ve experienced first hand what not listening can do to a person. The chaos it causes in our hearts and souls and in turn our lives. I’ve experienced what listening can do for a person as well. Thankfully I’ve spent the last five years of my life making listening a goal. The dramatic change it makes is well worth the work it takes.
By now you may be wondering what exactly I mean by listening. What I mean is learning to listen to your soul. That whisper inside us all. There are many names for it, I personally choose to believe the whisper inside me is God. It is him speaking to me. And learning to hear him, to listen to myself, my gut, my true self, has caused me to grow more than I ever thought I could! If we would all just stop and take the time to be still and quiet, and stop listening to what everyone and everything around us is telling us about ourselves! And start listening to what our God is telling us about ourselves! You see all the power we need is inside of us and we allow noise and fear and obstacles, we allow life to get in the way of listening.
Trust me it’s not easy learning to listen and it doesn’t happen everyday but my God the days it does!! The days it does makes all the effort worthwhile.
The day we stop asking “why is this happening to me?” and start asking “what is this trying to teach me?” That’s the day we become free.
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.
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!
No more analyzing. No more. I‘vewastedsomuchtimeinmylife over analyzing, overthinking. Somuchhashappened so recently, so much change, insuchashort.
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 getoutofmyown 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 everythinginlifehappensforareason. 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, andforapeoplepleaserwhichIhavebeenmywholelife, 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 choose to get up each day and believe that there willbe 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. Icare, 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!