Brain Surgery May 9, 2013 – Chiari Malformation

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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.

A-

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Photo: Max van den Oetelaar

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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?

A-

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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Versatile Blogger Award

I’ve been nominated for this award by the ever so strong and wonderful James over at My Place 3187. This is my first ‘Versatile Blogger Award’ and am beyond excited, so thank you again James for thinking of me.

Versatile Blogger Award

Rules:

  1. Thank the blogger who Nominated you for this Award.
  2. Include a link to their blog.
  3. Select 15 Bloggers that you’ve recently discovered or follow regularly.
  4. Nominate these 15 Bloggers for the Versatile Blogger Award.
  5. Let each of your Nominees know that you have Nominated them on one of their blog posts.
  6. Finally, tell the blogger who nominated you 7 things about yourself.

Seven Things About Myself:

  1. This is a BIG one – ready?! My name is Ana not Chiari
  2. I don’t like chocolate – but do enjoy other desserts and treats
  3. I have six little’s – no twins, you read right, six (Enlgish), seis (Spanish), sei (Italian)
  4. I’m fluent in English and Español 
  5. I know my numbers in Italiano – only, I tried
  6. I was diagnosed in 2013 with Chiari Malformation + Syringomyelia a congenital condition and brain disorder, I’ve had brain surgery for Chiari Malformation (decompression craniectomy) and in 2017 spinal canal surgery for Syringomyelia (laminectomy) – was placed a syrinx-shunt
  7. I have a YouTube Channel – simple and easy nail polish tutorials

Bonus: I enjoy all types of music – including country … my current replay / favorite Bebe Rexha feat. Florida Georgia Line ‘Meant To Be’ – so good!

My Nominees Are:

Bereaved Single Dad

All The Shoes I Wear

Cole Camp Fire Blog

Jason Frels

The Eclectic Contrarian

Something To Stu Over

Everyday Magic With Jubilee

Maggie Tiggles

Fight MS Daily

WCR 281

Simply Chronically Ill

Miraculous Smile

My Namaste 365 Online

A sweet thank you to all my nominees, I always enjoy your posts and look forward to reading ‘seven things’ about you all!

A-

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Random Acts Of Kindness Award | 2018

This is incredible! Such a wonderful way to remember a few positives in our lives. So often it’s easier for me to dwell on what’s going wrong, I forget what’s going right. This is one of those moments. Thank you Stuart this is so amazing – if you haven’t read his post, you must! It’s a true testament of never being alone in your struggles, God is always listening, God is always providing for you and sending His angles to help you. I continue to see His providence in my family – daily.

Here are the rules:

• Tell who you nominate and why.

• Copy and share the picture that shows the award, posted above.

• Share a paragraph of something that impacted your own life in the way of receiving kindness or how you extended kindness to someone else.

• Nominate anyone or share to your own page. If you so choose to Participate. Tag or ping-back to the original person who nominated you, or the original post.

The first act of kindness that came to mind was one from back in 2013. I had just recently been diagnosed with Chiari + Syringomyelia laying in my hospital bed awaiting my decompression surgery. I was feeling so lost and scared – but did well in hiding it all, not wanting to worry my family even more. I had three little ones home at that time, the youngest being 2 years old. My husband although a great support, still had to be home to care for our little ones. When my 8 hour decompression surgery was over, I was in so much pain and still feeling alone and scared. My first night after surgery, not being able to sleep, the night shift nurse came in – she had the sweetest voice, so comforting to hear, began to talk to me. I can tell she wanted to put me at ease and we began conversing. We spoke about our families, she spoke about her baby girl and we continued until she saw that I drifted to sleep. I will always treasure such sweet memory. She was my angel that night, she saw that I had my medicine for my physical pain, but she also wanted to comfort my soul, my heart. There are angels, that I’m sure of.

My nominees:

Julie

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Bethany

Shantanu

Alyssa

Caz

My nominees – as for you too, I admire you all for so many things, but most of all, you encourage me through your wonderful words, your output on life, your perseverance to make things lighter and more positive. Thank you!

A-

Patience – ‘Three Days Three Quotes’ Nomination Day 3

The last day for ‘Three Days Three Quotes,’ thanks again to the wonderful blogger over at Reveuse.

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AND don’t forget to visit my nominees ….

To you three ladies, I’ve followed you three amazing women since day one of my blogging journey and have – and continue, to learn so much from you! I see your strength and vulnerability shine through in each one of your writings! Please know that you are loved, appreciated, that I admire you and continue to enjoy following your journeys!

HERE ARE THE RULES:

Thank the person who nominated you.

Post a quote for 3 days andexplain why it appeals to you.

Nominate bloggers each day!

MY THIRD QUOTE:

“Patience is bitter, but its fruit is sweet” Aristotle

I was so intrigued to find the proper definition for patience, that I Googled it. Patience is ‘the capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset.’

If you’ve followed my journey you know that I have chronic pain, not from time to time, not every other day, but daily. D-a-i-l-y. I like to say, I don’t have ‘good’ days,’ I have bad days and I have even worse days. And I’ll be transparent and allow my feelings to be shown through your screen. It’s my reality, anyone living with a chronic illness knows that we have to practice patience every single day. And I’m not talking about having patience for your spouse, children, co-workers, family, etc. no! You see, we have to be patient with ourselves, be loving to myself, my body and mind, not to get upset or angry as that can trigger other symptoms like the infamous frustration, that can ultimately make things much worse.

I am my worst enemy. I beat myself up for not being a ‘normal’ woman – because who wakes up daily with pain?! I beat myself up for not being able to stand for long periods of time – because my legs get so weak I’m a risk of falling. I beat myself up for allowing the everyday things ‘bother’ me – you see I am sensitive to noise, light, you know the sun is the worst for me, yes, how do shut off the world in order for me to feel ‘good.’ I beat myself up for not being able to meet others expectations – they’re just too high for me to meet. I beat myself up for not being able to get in the car for long periods of time – you see with Chiari Malformation + Syringomyelia I get nauseated in the car when riding for too long and require I keep medication on hand and bags in the car in case the need arises to regurgitate, Disney trips are as daunting as they are lovely for the children. I beat myself up for having anxiety – you see I can’t have last minute invites, last minute guests in my home, etc. my anxiety will go through the roof, I can’t do things on a ‘whim,’ I can’t do things like the ‘average’ woman can, like go to the grocery store without feeling pain run through my body, I can’t get last minute notices from my children’s teachers for a school event, my agoraphobia will prevent me from being present.

I need to have patience with myself, patience to love myself as I am and not want to change a thing about me, pain and all. I remind myself that I am me and there’s no one quite like me. I am beautifully made by the most high that has made me in His image. I am here to live with Chiari for reasons I am too stubborn to understand. I am doing the best that I can and I am as best of a mother as I can be. As this wonderful quote says, ‘patience is bitter, but it’s fruit is sweet.’ Yes! It’s so bitter, it’s harsh, it’s a pill too hard to swallow at times, it’s a tough reality too many times hard to accept, to face, to know! To know it’s there staring back at me …

Yet, yet! It’s fruit, it’s a message, it’s an everyday motivation to keep going, to keep walking, to stand on my weakest days, this makes patience so sweet! It’s as sweet as they come, to be taught to have patience from such a horrible illness is the sweet reminder of the strength that lies within me.

NOMINATIONS:

1. Magic In The Everyday

2. Simply Chronically Ill

3. Discovering Your Happiness

If you’ve missed any of the other two days of the quote challenge, you can read Appreciate Life Day 1 and Forgiveness + Hope Day 2.

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Hope you all enjoy doing this unique challenge and I look forward to reading the quotes you’ve chosen!

A-

Forgiveness + Hope – ‘Three Days Three Quotes’ Nomination Day 2

In continuation with the ‘Three Days Three Quotes’ I will not do ‘Nail File Fridays.’ I was nominated by the wonderful blogger over at Reveuse.

AND don’t forget to visit my nominees! They are such amazing women. I absolutely love following their blogs, they’re so interesting and inspirational!

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HERE ARE THE RULES:

Thank the person who nominated you.

Post a quote for 3 days and explain why it appeals to you.

Nominate bloggers each day!

MY SECOND QUOTE:

“Forgiveness is giving up the hope that the past could have been any different” Oprah Winfrey

I have kept this quote so dear and near to my heart – I mean how can I not?! I grew up in a single-parent home, my mother raising three kids on her own, working two to three jobs at a time, trying to make ends meet. I was the youngest of three. I was about 5 years old when I quickly realized I hated did not like the weekends with my father. I also disliked anything related to Father’s Day because at school I would be obligated to participate in making Father’s Day cards and such things. It wasn’t for any particular reason other than this meant being away from my mother – they were divorced for about 11 years, reconciled and have now been married for about 15 years. All thanks to Him. So, this quote among other things have helped me see that my father was not one, in any way a monster two, a cruel man or three, the enemy – he made mistakes because of the weakness that lies in man. We have recovered our father-daughter relationship that was once non-existent and have healed what was once broken.

Also, my Chiari Malformation + Syringomyelia Diagnosis – it’s incredibly exhausting just thinking about it! I have begun therapy which has been a great source in my journey to healing. I go back and forth thinking of the what-if’s, what if I was born different and not with Chiari – there is no such thing as having been born ‘normal,’ what if I hadn’t gotten married and maybe this wouldn’t have happened – Chiari was inevitable because I was born with it, what if I was stronger – I am as strong as I need to be, what if I could be like these other school moms without a care in the world and living pain free – looks are deceiving and I may have physical chronic pain however these other school moms I so ‘admire’ are battling other life pains.

This quote reminds me that giving up the hope that Chiari if not present in my life today things could have been different, is a lie! I am not Chiari rather I am living with Chiari. It’s given me the strength I never knew I had and that is worth not hoping my life could have been any different than what it is today.

NOMINATIONS:

1. Four Jordans

2.

3. A Disney World Adventurer

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Hope you all enjoy doing this unique challenge and I look forward to reading the quotes you’ve chosen!

A-

Appreciate Life – ‘Three Days Three Quotes’ Nomination – Day 1

I’m so excited for this nomination by the wonderful blogger over at Reveuse for the ‘Three Days Three Quotes.’ I find her blog so encouraging, she speaks on all things life, love and positive thinking – love her posts! She has a way of lifting you with her words, if you haven’t gone to visit her page – you must. Thanks again Reveuse!

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AND don’t forget to visit my nominees! They are such great women with even greater blogs. I love when they post, always so inspiring and interesting each in their own right!

HERE ARE THE RULES:

Thank the person who nominated you.

Post a quote for 3 days and explain why it appeals to you.

Nominate bloggers each day!

MY FIRST QUOTE:

“I think you need to go through some stuff to really appreciate life and understand what it means to persevere, overcome and have faith. I think those tough times make you a stronger person.” Judith Hill 

I had my life significantly altered due to a few surgeries and because of this, I now live with daily chronic pain. However, I have also seen a different perspective of it all, they’ve happened to me for a reason. They’ve helped me become a stronger woman, a loving no BS kind of woman because life is too short to live for others.

NOMINATIONS:

1.Middle Me

2. My Li’l Place

3. Magic In The Everyday

Hope you all enjoy and I look forward to reading the quotes you’ve chosen!

A-