Chiari Is My Unwelcome House Guest

The past week has been a whirlwind. I’ve had my ups and downs and have been a ball of emotions. Last weekend I had to be taken to the ER due extremely intolerable symptoms due to Chiari and since then have had this week to recover at home from such events. Yes, I do take medication for many of my ongoing symptoms but when the medicine doesn’t do what it’s meant to help with, I progressively feel worse, and that’s when I take a trip to the ER. It’s no fun, it’s tiring and unfortunately I’ve been to my local hospitals ER more than I’d like to admit.

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While at the hospital though, I came to thinking about Chiari and what it means to me. I was thinking of what I can compare it to. I had so many nurses and a doctor come in to see me in my room and had no idea what Chiari nor Syringomyelia was. I don’t blame them though, the lack of knowledge and education on such a rare illness is seen too often, especially in the medical field.

I finally narrowed Chiari to this – that unwelcome house guest.

The one that refuses to leave no matter what signals you throw at it.

The one that has no remorse in overstaying their welcome.

The one that doesn’t shy away from being loud.

It has the worst timing!

It doesn’t care what day of the week it is.

It’s there and it isn’t looking like it has a departure date set.

If you have someone close to you that has chronic pain, lives with Chiari Malformation, Syringomyelia or any other illness, the best thing you can do for them is educate yourself on the matter. It’ll mean more to them then you’ll ever know.

Happy Friday,

A-

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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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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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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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Food For Thought – Parkland, Fl + Syringomyelia

While I am not here to debate, I did want to share my thoughts and feelings on Tuesday’s tragedy. I had what I thought was an important appointment scheduled on Valentine’s Day but later realized something else would be of greater importance. I had my 12th week follow up appointment following my November 7th Syringomyelia surgery. As we made our way to the hospital, listening to the news on the radio the report came in on what was just transpiring in Parkland, Florida. It was all just developing and any further detailed information other than location wasn’t being said. While we waited to be seen, nurses outside my room began to talk saying there were confirmed casualties, my heart sank. When we arrived home, we were immediately updated on the horror that was happening right in our home state, a shooting in a high school. Since then my heart continues to ache and my prayers have been with these students and parents. These parents that have lost their babies on this tragic day and the unimaginable pain that they are feeling. I also woke up not wanting to send my 3 older kids to school. I thought it was too soon to have our children return to school when such horror is still so fresh on our minds. I’ve spent the day between watching cartoons my little ones enjoy and going back for updates of what is going on in Parkland, Florida. It’s been a day of sadness, frustration and disappointment. And because I don’t want to go to a place of hate or anger, I chose to spend the day in prayer – constant prayer. It’s worrisome and frightening knowing this is the world my kids are growing up in. A world in which on February 15th every parent felt a heart wrenching fear as they took their kids to school, a fear that shouldn’t correlate with school. A lot is being said about mental illness. I believe that many think of mental illness as taboo. I live with Chiari and Syringomyelia, symptoms that include daily pain – life altering pain and discomfort. An illness that doctors have said, has no cure and surgery is but a relief. All this, all of it, takes a back seat when I take care of my son whom in 2011 was diagnosed with speech delay and later in 2016 with Autism and ADHD. This is real, mental illness is real and more needs to be said and done for our children. It’s not taboo and it’s a conversation worth having if it’ll change the social custom of our society. It’s OK to have Chiari, Syringomyelia, depression, anxiety, agoraphobia, postpartum depression, baby blues, Autism, ADHD and the list goes on and on. Also, we need to stop being silent and feeling ashamed of mental illness. My consolation in times of struggles and triumphs is the reminder that I am not alone and that the Lord is my Shepard – Psalm 23: 1-6.

Xo – Ana

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