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: In Defense of Stay-At-Home Moms — Autism in Our Nest

As a stay at home mom whom didn’t stay home from the beginning, I must say the transition was rather smooth. I loved my position in the corporate world, but once I had my oldest, my heart yearned to be with her and raise her myself.

I came across this post from Autism Family Power where she mentions coming across an article where a working woman asks, “what do stay at home moms do all day?” The question wasn’t ill intended, but rather out of curiosity.

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I chuckled a bit and then had the sudden urge to detail and justify my role at home. However, each of us has different reasons for our decision to stay at home, and the role of a parent that stays in the home is like no other. His/her role comes without a financial earning, without breaks, days off and too often are running on fumes.

However, the internal satisfaction of making sure my kids are taken care of, taking care of my families daily needs and each of my children’s individual needs be it school or otherwise, is beyond any pay check I could ever receive. The ‘tasks/jobs’ are endless, from scheduling doctors appointments, to making sure my son is thriving in school since his autism diagnosis, to potty training – still doing it. The list goes on and on. All the while praying I am doing a good enough job at raising good, compassionate citizens. Also, caring for myself as I have Chiari 1 Malformation – a congenital disorder.

So, if you’re a stay at home parent or not, our goals are all the same. We’re all caring for our homes and our families needs to the best of our abilities, being in the corporate world or not.

A-

Recently I read an article where a woman asked Stay-At-Home Moms what they did all day. At first I got defensive, but changed my mood. Read more about this, here!

via In Defense of Stay-At-Home Moms — Autism in Our Nest

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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.”

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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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The Liebster Award – 4

Thank you to my fellow blogger The Eclectic Contrarian. If you haven’t read his incredible poems or been to his blog for some lifting and motivational writing – pay him a visit! Thank you again for your support, I’m humbled.

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Here’s How It Works:

• Create a new blog post on your blog thanking the person that nominated you, link to their blog and put in a graphic of the award.

• Answer the questions that were provided, and then share some facts about yourself.

• Create a new set of your own questions for others to answer.

• Nominate 5-11 others and share your blog post with them so they can accept their awards

I’ve Been Asked The Following:

-Whats a topic you love and don’t love to write about?

Always appreciate humor. And honesty. Or should I say honesty in form of humor.

I began this blog with Chiari Malformation + Syringomyelia in mind, however, I have my days when I just can’t get myself to speak on the subject. It just seems to drag me down at times, realty sometimes can get the best of me and I choose to not think on the matter.

-Who and what influences you to write?

Life itself, the brutal truths, the humor in life, my kids and what’s been on my mind at that particular time.

-What emotion gets your creative gears rolling?

Whichever emotion I am feeling at that moment is the best in getting me to write. Whether I’m feeling a bit low, happy or excited.

-Do you write from who you are? Or, who you wish you to be?

I like to go with who I am. I may not be everyone’s cup of ‘tea’ but being myself, authenticity is what will be the greatest in the long run. Those whom choose to stay, will and those who don’t, won’t. And that’s OK.

-Are you a city, country, foreign or even fantasy/sci-fi type of person?

Let’s go with foreign. I’m a little complex, but authentic.

Interesting Things About Me:

I’m a whopping 5′ feet tall!

I’m a righty and have two of my little girls that are lefty.

One of my favorite actresses is Julia Roberts and comedians Robin Williams†

I dislike talking on the phone – and texting

I will hold you to your word, which can be both a blessing and a curse.

I like to be punctual / on time to places. I believe firmly in respecting peoples time.

I think communication is key in any relationship, friendship or otherwise.

My family absolutely loves all things Disney World, including Walt Disney himself, his story, life, how it all began, etc.

Am very much looking forward to the movie ‘Toy Story 4’ being released later this year

As a stay at home mom, I like to work in an organized and clean house, otherwise it’s a no-go!

If I can learn how to do it, and do it myself, I will, for instance, painting walls, dying my own hair at home – been doing it for years, and just recently, cutting my boys hair at home because at $20 x3 boys = doing it myself! No offense to the professionals  🙂

I Nominate:

Simply Chronically Ill

Daily Grind Of A Stay At Home Mom

Bereaved Single Dad

Stubaby777

Gods Whispers Of Truth

My Questions To You Are:

• Do you feel your blog represents who you truly are?

• When in a rut, what motivates you to continue to write?

• Is there a topic that is off limits in your writing / blog?

• Was there any one person that motivated you in starting your blog?

Thank you to my nominees, I appreciate your time, so please take your time in responding.

Ana

The Liebster Award – 3

The Liebster Award

I want to thank The Pink Herald’s Blog for this nomination! It’s always such a great feeling knowing you are doing something remotely right that you’ve touched a fellow blogger enough to think of you. Thank you Lynn! If I can describe her for you in one word it would be, survivor! She’s a survivor! Get to know her, her blog, her story and how she created her blog in memory of her sister Kathi.

What The Award Is:

The Liebster is an award that is given to bloggers by other bloggers. Liebster in German means sweetest, kindest, nicest, dearest, beloved, lovely, kind, pleasant, valued, cute, endearing, and welcome.

The Rules:

Thank the person who nominated you

Answer the questions about yourself provided by your nominator

Nominate 5-11 fellow bloggers with fewer than 1000 followers who you think deserve the award

Create a new list of questions for your nominees

List the rules in your post

Let your nominees know of your nomination personally

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Questions:

1. Who would you most like to meet (dead or alive) and why?

I would have loved to have met my paternal grandfather – he was Korean. My grandparents divorced and I only got a chance to meet my paternal grandmother that has been deceased for a few years. I saw her a few times on trips to Nicaragua. She was such a strong lady, so creative, so loving. As I grew up, either I was teased at school or was nicknamed for my Asian facial features, specifically my eyes. As time went by and now as an adult, we finally were told about my paternal grandfathers side of the family. It was such an amazing feeling knowing that even if only to have his Korean features – I’m happy to know something of him lives in me. My children also have my facial features and it just reminds me of how far our blood line goes – incredible!

2. Who is your favorite author?

One of a few, the author Lauren Weisberger that has written titles like The Devil Wears Prada – great by the way! I’ve been recently itching to read When Life Gives You Lululemons – have to get that!

3. What is one thing you would like to accomplish in your lifetime?

In my lifetime, to know that I’ve done a good job raising the children God has sent to me. I try to raise them to best of my abilities and pray that I can continue to lead them on the path to knowing the Lord as their one and only true Father. As my life will not last forever, but the love of Christ will live in their hearts forever.

4. What is your biggest regret?

Regret, I try not to look back at my life with regret. However, there are a few events, heartbreaks, friendships that I would have liked to have gone differently, maybe have been more honest. I would have wanted myself to have been stronger and able to have been willing to speak on what was in my heart, things have remained left unsaid – on my behalf. Isn’t that unfortunate, when you didn’t speak on something and would have liked to?! Ugh!

5. What is one thing you could start doing to make a difference in someone’s life?

Aside from living with chronic pain and spending most of my days on edge due to the pain. I try not to be snappy or disrespectful to people. I try but if you come to me with some nonsense about life’s hardships, to me – I apologize in advance for my lack of interest. It’s hard to want to make a difference in someones else’s life when I’m barely making a difference in my own. I do want to make a difference through this outlet – my blog. And outside of this outlet, I try to be a good ear to whomever needs one, be a good listener – not always a talker. Again, living with chronic pain on a daily basis can get in the way of trying to be a ‘good’ friend by societies standards, but I try my best. If I think of you, I try to reach out and take advantage of that moment and send a text or anything to let you know, I’m thinking of you. I can definitely start wanting to build stronger, better friendships.

My Nominees:

Four Jordans

Cole Campfire Blog

Parks & Recreation

Sparkkling Thoughts

Journie 2 Woman

My Questions:

(I’m going to borrow one here from Lynn, thank you Lynn!)

  1. Who is your favorite author?
  2. If you could recommend this busy mama a book that you think is worth the read, which would it be?
  3. When was the last time you did something for yourself?
  4. If you could only choose one, what would be the one quality you look for in a friend?
  5. How would you like to be remembered?

Thank you blogger friends for participating, I think your blogs are amazing! I can’t wait to read your answers!

Have a wonderful day!

A-

Sunshine Blogger Award – 2

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Hey everyone, how exciting to know I got nominated by the very talented blogger over at All Things Alexyss, she’s a makeup artist, writes about makeup, fashion and lifestyle – stop by her blog and say hello! Thank you Alexyss for the nomination, I appreciate it!

The Rules:

  • Thank the blogger who nominated you in the post and link to their blog
  • Answer the 11 questions asked of you
  • List the rules and include the Sunshine Blogger Award logo in your post
  • Write a new list of 11 questions for your nominees
  • Nominate 11 bloggers for the Sunshine Blogger Award

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Questions from All Things Alexyss:

1. How did you first get into blogging?

I got into blogging, I believe in February of this year. After years of contemplating as to whether or not to do it, having a passion for writing but not believing I can do blogging, I finally gave it a go! And here we are. My main focus is to spread awareness for Chiari Malformation + Syringomyelia it’s a rare congenital neurological disorder – phew! That’s a mouth full, yes, it’s definitely a fun task to have to explain this to people.

2. What motivates and inspires you to write?

As my therapist put it oh so nicely, it’s free therapy! Yes, I agree. I get to write about things from my family to things that interest me. If I don’t write about Chiari, it’s because I find myself in denial at times not wanting to face the music, not wanting to accept things, however when I do, it’s a release. Chiari can be like the ‘ole ball and chain, just following me, slowing me down and trying to get me to the lowest of the lows.

3. What is your favorite season/weather and why?

Summer. Although it’s technically Hurricane Season in Florida, Summer is when the kids are home from school, they can spend more time with the little ones without the rush of homework and other things that get in the way during regular school days.

4. If you had the opportunity to travel anywhere and stay where would you go?

How relaxing does Fiji sound?! To lay by the clear blue waters, having some coconut water, enjoying the nice view, the breeze and stay on those over-water bungalows, yes please!

5. If you could start over in life would you change anything?

I wouldn’t choose to start my life over. I know the ending of some events in my life brought me great sadness, like the end of relationships or initial diagnosis of my illness. But all that is inevitable. Things happen where either you learn from them, you learn through time to accept them, you keep them in your heart, but never allow them to hold you back from anything. From moving forward. My diagnosis was bound to come into my life sooner or later, and I think it’s best to always know, go to your doctor and know what’s wrong. So that then you can take the necessary steps to get you on the right track.

6. What is the one makeup product you cannot live without?

My OLAY Moisturizer  have used it for years and haven’t nor would I trade it for any other.

7. What is your #1 passion in life? Why?

I think it’s more like my mission in life. And that is to raise good people, good citizens and followers of Jesus. The Lord has granted me the blessing and privileged to care for the children that He’s sent to me. I struggle daily, I do something that shows the impatient mother in me, but He always has enough mercy for me to give me another day to make things right.

8. What are the three things you would bring with you on a desert island?

OK, this list is way too short, can we group my tribe aka family in one?! Thank you! 1. Familia 2. my phone because Lord knows if the tribe will be bored and 3. food because there’s always someone hungry around these parks, always!

9. If you were going to college right now what would you major in?

Criminal Justice. I’ve loved law since I first started to work in a law firm at about 16 years old and my heart just fell in love with it. I’m an artist by trait, but love law.

10. Favorite quote?

I love many but if I can apply one for today, it would be …

‘If life changes to be harder, change yourself to be stronger’

So, incredibly true, we can’t change life, the things, the breakups, the heartaches, the diagnosis that have been dealt to us, but we change our perspective.

11. Favorite genre of food?

I love Thai food. So, yummy – some of my favorite dishes are Tom Yum Gung – the lemongrass with mushrooms is delicious, Pad Thai and for dessert, not exactly an authentic dessert from Thailand, it was introduced by the Thai restaurants in America and labeled “Thai Donuts.” You must try these small fluffy biscuits drizzled with sweet condensed milk, so savory! This must be what those white fluffy things floating in sky taste like, it just must!

My Nominees:

Outside Air

My Li’l Place

Simply Chronically Ill

Questions: I’m going to borrow these from Alexyss because they were great! Thank you Alexyss!

  1. How did you first get into blogging?
  2. What motivates and inspires you to write?
  3. What is your favorite season/weather and why?
  4. If you had the opportunity to travel anywhere and stay where would you go?
  5. If you could start over in life would you change anything?
  6. What is the one makeup product you cannot live without?
  7. What is your #1 passion in life? Why?
  8. What are the three things you would bring with you on a desert island?
  9. If you were going to college right now what would you major in?
  10. . Favorite quote?
  11. . Favorite genre of food?

To my nominees, I hope you know that I love your blog and that I think you are amazing! I look forward to reading your answers.

Have a wonderful night!

A-

Syringomyelia – MRI Post Surgery

I had an MRI following my November 7, 2017 Syringomyelia surgery. I had a syringo peritoneal-shunt placed, this shunt will remain in my body forever. This is the procedure that helps divert fluid from one space to another. The name for the shunt is given by the doctor and it’s based on where they start and end. The decision to do this procedure depends on the person’s health situation and the surgeons preference. A syrinx is also most commonly known to be a side effect from another health condition, in my case, I have Syringomyelia because I have Chiari 1 Malformation. A way the doctor would know if a syrinx is present is by performing an MRI of the spine. When I was diagnosed In 2013 Life Began with Chiari + Syringomyelia an MRI of the entire spine was immediately ordered to look for syrinxes. My most recent MRI was done a couple of weeks ago and shows how my syringo peritoneal-shunt has been diverted successfully to the peritoneal space or my abdomen.  It’s always good to continue to check on the shunt because it can fail after having had successfully worked. The failure of the shunt working may be due to various reasons one, the catheter becoming clogged and can no longer able to divert the fluid from one space to another. This failure in the shunt can be seen by MRI, the shunt will show being refilled with fluid or enlarged. However, one way of knowing a failure in the shunt is that you will notice the symptoms returning. My recovery from Syringomyelia surgery is expected to take about a year. I’m still feeling the numbness on my left side, weakness in my legs, numbness in my neck area and back which can only be described as cape like, among other things. The neuropathic pain I have is a type of pain that is difficult to treat as this is damage caused to the nervous system. However, it is found to be common in Syringomyelia patients.  As far as knowing for sure the long-term outcome after surgery, for Chiari related Syringomyelia although surgery will reduce the syrinx, research has shown to stop it from growing 80% of the time. Surgery however still doesn’t always provide significant improvements in symptoms and many people will still experience pain and other symptoms after surgery.

February 2018 Post Surgical MRI

MRI – On the right showing syrinx and on the left showing post surgical placement of shunt.

-Ana

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