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

 OJSPRIDE

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-

Life Perspective After Chiari + Syringomyelia Diagnosis

When I was diagnosed and operated for Chiari 1 Malformation I had three young little ones, my oldest being in kindergarten at the time. So, I arrived to the ER in May 2013 and never imagined the diagnosis that would result from that visit.  You can read more in depth of my story in my post titled In 2013 Life Began with Chiari + Syringomyelia So, after the neurosurgeon came in to my hospital room and told me I needed emergency Craniotomy or brain surgery, I requested to leave home to get things in order before the surgery. The mom in me wasn’t ready for surgery, I wanted to get the house in order before my absence. I can’t ever seem to get my mind to stop, it just never stops. I was in observation for a couple days before my surgery day and during this time I was able to do homework with my daughter from my hospital bed. I was also able to inform her school of the situation that the family and I were having. It really did take a village to get through surgery and recovery.

 

Then you fast forward to 2017 when I had Laminectomy surgery for Syringomyelia, this time I had six little ones – and still do. The recovery hasn’t been easy but it’s also helped me see my husband and the little faces of God’s perfect creation looking back at me. Children really do give you the inner strength you thought wasn’t in you, the courage and fight you thought you didn’t have. I now, few years later look at this disease in a different perspective. I’m not well, probably won’t ever will be and that’s OK. It’s about accepting things for what they are and stop trying to change things that can not.  If I decide to physically shop at a store, I have to know the store, I have to know the layout, so that my shopping trip is as quick as possible. I like to call this my new normal as opposed to something being wrong. There is no normal, there is no right or wrong way your health should be. Also, know that you don’t have to try to make other’s understand what you’re going through, try to explain this rare disorder you find yourself living with. This could be such a burden and so frustrating. If you have even one person you can rely on, that’s great and if you know of another Chiarian, lean on them! Also, feel free to be present in your pain, know it’s OK to not have a good day when living with Chiari, especially when this disease is physically unseen, it’s an unseen disability.

-Ana

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In 2013 Life Began with Chiari + Syringomyelia

As short as I’d like this post to be, I have an inkling of a feeling it’ll be anything but. However, my goal is to try to be as thorough as I can, starting from the beginning of my journey with the disease. A little history of my health, as far back as I can remember as a child and adolescent, I had ongoing headaches and migraines. As my mom would later realize, she’d give me Tylenol just so that I could get through school hours without having a headache mid day. My first episode to what we know now to have been Chiari 1 Malformation, unfortunately went undiagnosed at the hospital. After many tests, I was sent home with what they said was a migraine. This is unfortunate but true to many Chiarians. So after I had a second episode we decided to now go to a different hospital. The official diagnosis came in May 5, 2013 when what was supposed to be a quick trip to the ER, would be the trip that ultimately changed my life. The reason for the ER trip, muscle weakness, problems with coordination, trouble walking, blurred vision, seeing blotchy black spots, sensitive to light, sensitive to noise, dizziness, headache, vomiting and nausea, vertigo, decreased sensation on my left side and trouble swallowing. Things like bending forward, pulling, pushing, straining, lifting became intolerable. After blood work, CT Scan and MRI the diagnosis was Chiari 1 Malformation and Syringomyelia.

We’ll go through a quick crash course for this rare disease, Chiari 1 Malformation is a condition in which brain tissue extends out of the skull causing it to press downward into your spinal canal, present at birth. What does this mean you ask, basically the brain is too big for the skull and it’s causing the brain to stick out or herniate at the base of the skull causing pressure to the spine, my cerebellar descended 12.8 mm downward.

As to Syringomyelia, this is a rare disorder in which a cyst forms within your spinal cord. This fluid-filled cyst or syrinx, can expand over time and compress and damage part of your spinal cord from its center outward. My syrinx began at C3 to the top of T2. You must know that in most circumstances, to have a syrinx present is considered to be a side effect of another problem, in my case, Chiari. The surgery that one can have to relieve the pressure in the head caused by Chiari is decompression surgery.

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What is decompression surgery? I’ll go a little more in depth with my personal 2013 decompression surgery for Chiari. I’ll give you small snippets of what was done inside the operating room. While I was fully sedated, endotracheal intubation was done by the anesthesia team. The eyes are then taped shut and I was placed on the Jackson table with Wilson frame. The head was clamped in the Mayfield 3-pin head holder and affixed to the bed. Then, moving the neck slightly forward, the hair is now clipped and/or shaved with a hair clipper. The surgeon now makes a mid-line skin incision from the back of neck area up to the head to release pressure at the base of the skull. This is done by sawing off bone, opening the dura and then closing the dura matter with a patch. The bone would not be returned back to area. Because the cerebellar tonsils descent or herniation was significant – 12.8 mm to be exact, the decision was made to shrink the tonsils. They removed the tonsils and cerebellar tissue by a few mm’s on each side. A dural repair graft was sewn in to achieve further dural compression and the dura was stitched closed. Lastly, I was then  flipped over to a regular bed and extubated before leaving the operating room. The patient would have a hospital stay of a couple days – mine was 15 days. The neurosurgeon on call the day I arrived at the ER on May 6, 2013 would also be my surgeon on May 9, 2013, surgery day. After my discharge and before my post operative follow up visit with the surgeon, I was admitted to the ER twice, both times diagnosed with aseptic meningitis also known as viral meningitis. Note that viral meningitis is more common and less severe than bacterial meningitis. I was also placed on medications to help with the anxiety that followed from surgery, pain medications and muscle relaxers.

Although I was also diagnosed with Syringomyelia at the same time as Chiari, the surgeon did not attempt to touch this at this time. He mentioned that addressing the Syringomyelia would be  too risky – but aren’t all surgeries risky?

Please keep in mind that I am not a doctor by any means and by writing this, I am expressing my personal experience with the disease. The one of many obstacles Chiarian’s face is that it seems as if no one has ever even heard of these conditions. The lack of general awareness Chiari has, has encouraged me to be a voice and help spread awareness – hence the reason behind creating this blog. Because ultimately this can become a burden – huge, to patients trying to inform family, loved ones, friends, co-workers etc., about what they go through. Where do you begin, how to even explain?! Also, as you may already know, be informed that like any surgery there are potential risks and other procedures may be needed in the future even after a successfully performed decompression.

So, fast forward to 2017, endless complaints to my neurologist and surgeon regarding my 2013 diagnosis of Syringomyelia, all of which assured me all was good. I was still since my 2013 diagnosis, experiencing ongoing symptoms, had countless ER trips, on many pain medications that I decided to make a change. I changed hospitals, doctors and started from zero. I then visited multiple doctors in different hospitals, had MRI’s done for all of them and all of which said to continue medication and that addressing the Syringomyelia surgically would be too much of a risk. Finally after having a borderline break down came a break through. I remembered and decided to reach out to a surgeon I had researched in 2013 after my decompression, Dr. Barth Green, a neurosurgeon. His office isn’t too far from where I live in Florida and so I made the decision to call his office. I had a lot of digging to do first for the neurologist Dr. Martinez-Arizala -they work in the same office. He first needed to see my medical records to determine if my case would be moved to surgeon Dr. Green for final evaluation. The process would take weeks. Yes, this is the system and this is the way things operate. This meant I had to go back to the hospital where I had decompression surgery to gather it all. I had to get all of my records, from MRI’s to CT scans, all to be saved on CD’s, this included before and after surgery, any and all medical records, operative report, all doctors notes, etc. etc.! All. Of. It. He wanted to see it all! Thankfully all was not in vain, I was called by the surgeons nurse to come in and meet with Dr. Green soon after all my medical records were sent. He had already evaluated my case/records on our initial visit and recommended laminectomy with a possible shunting of the cyst, meaning placing a shunt was a possibility. They say, “possible shunting” because even after having done an MRI prior to surgery, the final decision is made at the time of surgery. There is really no way of knowing what the doctor is dealing with until he opens – too graphic! Sorry! The date of surgery was on November 7, 2017 and here laminectomy was performed and a syrinx shunt was placed. The syrinx shunt diverts the fluid from the syrinx into another space where it can be absorbed. There’s a few locations where the fluid can be absorbed and this is what differentiates one shunt from another. The shunt I have is absorbed in the peritoneal space or abdomen. The space location is determined on the patients case and the surgeons personal preference.

I appreciate you coming this far in the post and following my journey. Those of you that can tolerate not so pleasant images, I share some pictures of my hospital stay following my most recent November 7, 2017 surgery for Syringomyelia.

Xo – Ana

 

 Pictures following my November 7, 2017 surgery for Syringomyelia