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-

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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!

NORDSTROM Half-Yearly Sale! SAVE up to 40% on selected styles now through June 3.

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-

Hard Mom Days: A Kindhearted Woman Gains Respect

Hard Mom Days: A Kindhearted Woman Gains Respect

The topic of motherhood can be a bit of a free for all – some think that either you’re doing too little or not enough and their need to give unsolicited advice to tell you what you should be doing with your children. This is why, I always choose to hold opinions of others to myself. As I myself run on survival mode.

So, I’ll begin by telling you how exhausted I am, how physically draining I feel, how sleepy I feel – that sleep that has you not being able to choose whether to eat or sleep and you choose to sleep, how hungry I feel to have maybe 5 minutes to myself! Not to go out, but rather have 5 minutes without the door to my bedroom or bathroom – because you know you can’t lock the door there, continuously opening with little voices asking where my ‘X’ toy is, where my ‘X’ shoe is, where my green ‘X’ shirt is and the list goes on! Yes I am grateful for the little ones, yes I feel overwhelmingly blessed to have them, yes I know they’re growing up, yes they will grow and leave my home. Yes, yes, yes! But give me a minute to let this out! Give me a moment without judgment! It’s OK as a mom to say, I need a break – and not only on Mother’s Day, a breather, a shower, a time to do my hair, a time to eat without sharing – is that being selfish? And a time for rest!

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What a week it’s been!! I have a house full of sick kids – and I won’t remind you how many there are, because the school going children tend to bring home all the germs they can gather and then spread them to the little ones. You know, that snowball effect?! And the only not-so sick child I had, today woke up throwing up. Welcome to motherhood! The land of the unknown, where anything can happen and where all things change at any given moment. Also, where your title as mom can quickly shift from mom to nurse to lullaby singer to clean up crew person of projectile things that come out of little ones mouth to sleep rocker of sick children, just name a few. And then just like that, it’s 4 am. I am so thankful that on most days, I can gather enough strength and not take out my chronic physical pain onto the children. We mothers can do that so quickly – especially when we are exhausted and running on no sleep. If I feel overwhelmed with the children, I give myself a time out. I take this time – be it 5 minutes or 2, to practice my breathing, gather and center myself. Because as mother’s we choose which road to take with each particular child of ours. The impatient child – that can test our own patience, the not-so still child, the loud child to the one that never seems to stop the crying.

‘A kindhearted woman gains respect’ from Proverbs 11:16 is such an encouraging scripture, it serves as a reminder how yelling and anything other than showing respect to the little ones is not a solution to solving a chaotic situation. Because when I’m tired, when I haven’t had the time to eat and had very little sleep, I can get mean, fast. The voice gets higher and I get snappy. So, this is a beautiful reminder to be kind and from my kindness the children will respond kindly in return. It’s so refreshing to know that in any ‘hard’ mom day, through your actions as a mom, you will gain your children’s respect.

‘As one whom his mother comforts, so I will comfort you.’ – Isaiah 66:13 I often think that I am giving my all, to my children to my home to my spouse and at times ask, what about me, where do I stand, who comforts me?! Because as a mother, I comfort my little ones, at homework time – encouraging them, when they fall – healing them, when they can’t sleep – comforting them and when they feel scared – loving them. I say them because it makes me feel less of a priority and feel myself being pushed more and more to the far back of the line. However, this verse reminds me that I am a priority, that I am loved and that I am comforted by the most faithful of them all. With this He reminds me that as I comfort my child, He also comforts me – and you.

Hope you’ve had a wonderful Sunday.

A-

LIFE OF A MOM WITH CHIARI 1 MALFORMATION + SYRINGOMYELIA

This rare disorder has quickly changed and altered the course of my life. So, my hope through this outlet is to raise awareness for it. I think the most important thing like everything, especially an illness is early detection, early diagnosis and ultimately receive treatment is essential. I can’t stress that enough. The importance of knowing what you have is key. So, if you’re feeling any kind of way, overly tired even after getting a good nights sleep, rapidly putting on weight or loosing weight, have ongoing headaches, having unbearable back aches, etc., go get yourself checked! I know many people have a fear going to their doctors out of fear, fear of being told they may have something, like an illness. But understand that this will allow doctors to properly treat you if something were to arise and time is always of an essence.

Chiari Awareness Picture

The changes that have happened due to  In 2013 Life Began with Chiari + Syringomyelia have been things that have affected my entire family. My life as a stay-at- home mom having Chiari and Syringomyelia has affected the way I do everything has changed. I make the changes to accommodate the levels of pain that I may feel on that day.

A few of the changes I’ve made are …

 shop online

  have family movie nights in the comfort of our home

 bring the ice cream home

⇒ As far as cooking, if you’ve read More About Me you know I am Nicaraguan and I love cooking and baking. It’s such a stress reliever, but it’s then been limited.

So, overall I have really had to change my way of thinking to care for myself, to foresee situations, for instance locations I may be traveling to, perhaps on vacation. So, have self awareness. Also, don’t feel afraid or guilty to say no, make changes to your plans or feel bad to say no to people. Just know this is your honest truth and you come first. You can read more about that here Life Perspective After Chiari + Syringomyelia Diagnosis I get pressured into feeling “normal” but what is normal? Because I do consider myself normal, just not the definition of everyone else’s normal. This is a chronic illness that comes with chronic pain. Chiarian’s are often called Zipper Heads, because of the scar that is left behind our necks from decompression surgery. It’s a scar that I was once afraid of showing but have realized that everyone wears a scar. Some scars are just seen while others are not. You can wear your scar on your arm from a fall, on your face from a burn, behind your neck from decompression surgery, scars from c-sections – such as myself from my 6 littles or on your heart from a breakup or loss.

I also find ways …

⇒ to sit and play with the kids, we love to draw, paint and do puzzles.

⇒ I spend countless moments with them cuddled up in bed, reading a book or watching an Elmo or Peppa Pig video – a few of their current favorites.

This is an invisible illness and symptoms can flare up at any time. So, never be ashamed or embarrassed to alter your day. I have noticed that simple things like smiling or am seen outside my home, is quickly misinterpreted as me miraculously being cured and feeling better. However, a smile simply means that you’re trying your best to get through the day.

-Ana

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