Brain Surgery May 9, 2013 – Chiari Malformation

May 9, 2013 is marked within the deepest part of her soul. 

It’s only brain surgery they said.

8 hours into a place of the unknown, she drifted to a deep sleep. 

You never know who or what may change your life – until it does.

And the 8 hours are up, she awakes to a new life – a life of chronic pain that can only been seen in her face.

It’s an invisible illness they said. 

She struggles to maintain her composure.

How does one live with pain, deep pain, pain that doesn’t discriminate and doesn’t stop to ask you your name.

SHE does, she struggles, she cries, she hurts, she screams, she writes, she draws, she smiles, because when time doesn’t stop, she can’t stop.

And when she asks for help, he says, I can’t take the pain, but I can give you something for the pain.

She continues to scream the silent scream.

Be grateful, be thankful – they say.

But when one has no other choice but to be strong, then strong she is. 

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May is Mental Health Awareness Month and being that our mental health is just as important as your physical health, I encourage you to get screened, get help or ask for help. There are both adults and children going through some type of mental illness – break the stigma, it’s not bad, you’re not crazy and you can get better by getting help.

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Photo: Max van den Oetelaar

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“Hang In There”

I suspect you already know that with every chronic illness come a few doctors appointments – or many. I had to see my doctor recently as the pain in my neck doesn’t get any better and the medication was running low, so back I went to see my Neurologist. There is a strange thing that happens but with each MRI comes a new result. In reviewing my last MRI on his monitor I noticed a curve on top of my neck in the shape of a letter ‘C’ you could say. But we simply continued talking and moved on. However, I couldn’t stop thinking about it and asked him about it. He said a curve like that is normal say on an 80 year old, but not on someone my age. The two surgeries I’ve had, the first in 2013 and the other on 2017, both have been entered through the back of my neck, so my neck has taken quite a bit. The result, it’s caused the top part of my spine to collapse – hence the letter ‘C’ shape, the other result, pain, the remedy, more medicine. We will try a new medication to manage the pain and come back to revisit the issue. I thanked him for his time and as I’m leaving he says, “hang in there.”

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Those simple words have taken over my mind. How many times does something unprecedented happened? And you, “hang in there” or you have absolutely no choice but to do just that?! Aren’t we all doing just that for different reasons, for the sake of your own sanity, because you’re going through a break up, a job loss, marriage issues, financial issues, whatever the case maybe, you’re “hanging in there.”

As anger wanted to creep up inside me, I thought of hope. The word hope. The hope that this will continue to help me gain patience for myself and my body, and hope that I will continue to live life, this new life with much gratitude, the life with physical pain, but life nonetheless.

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Reblog Wednesday: Lies I Tell Myself: IV — chiariconversations

This weeks ‘Reblog Wednesday’ has come at the perfect time, and it’s by none other than Michelle over at Chiari Conversations. She’s a fellow Chiarian and her vulnerability and honesty is like breathing fresh air each time I read her posts. If you have neurological issues, or are a fellow Chiarian yourself, please follow her journey along!

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And I say it comes at the perfect time because I have not been quite myself, the body pains have increased, my left leg and foot have been getting increasingly numb and the vertigo, well, the vertigo is a pain in the rear end! I’m going on 6 years since my brain surgery for my Chiari Malformation and every day feels much like I’m going through a slow death – only I’m still here and my brain is being squished by the minute. The stabbing pain behind my neck doesn’t subside and what seems to be the never ending hospital / doctor visits can make me feel much like an elderly than a young mom.  As Michelle clearly states, a few years ago I really don’t know how I could have handled these constant headaches. It’s not your casual headache, ‘you missed a meal, you are a little stressed’ kind of head ache – no my dearest friend and reader, this is a, run and close the blinds, turn off the lights, turn off the volume to everything, including the neighbors barking dog and let’s hibernate for say, a few weeks – kind of headache! The one where you momentary just wish to be a vampire, because lets face it, I wish the world around me was pitch dark, complete darkness.

If you have Chiari Malformation or not, maybe you are dealing other health issues and can relate …

The feelings of wanting to feel like wanting to enjoy life / social gathering without having the next day or even weeks be filled with even more pain and misery. Yes!

The feeling of not wanting to be told ‘you’re strong’ but know that I’d rather lay in bed in a fetal position because I can’t take the pain. Yes! 

The wanting to go to the store and not have to worry about my left leg – body, being overstimulated and being at risk of falling in public. Yes! 

The wanting to go out to a public place, say, church, etc. and just setting it on mute because the chatter and noise level is too loud for my brain to handle. Yes!

The need to want to be ‘able’ and not ‘unable.’ Yes! 

The feeling of constantly needing help, because lets face it, I can’t do it all – literally. Yes!

The need to want to tell scream people to ‘get.to.the.point’ because conversations overstimulate my brain. Yes! 

The wanting to stop being told, ‘but you look good’ because I know that if I looked like how I felt, I’d scare even my own offspring. Yes! and Yes!

What are some of your new normal’s?

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It can be difficult to really KNOW whether the pain is normal or not when dealing with neurological issues. It doesn’t help that pain is personal even in the temporal sense. Five years ago, I WOULD NOT have been able to handle this level of constant headache. I would have thought I was dying. Today, […]

via Lies I Tell Myself: IV — chiariconversations

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