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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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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Actress Selma Blair And Her MS Diagnosis

If there’s one thing I enjoy doing, is watching early morning TV while sipping on coffee. The older children have gone off to school and my littlest babies are still in bed asleep. This morning was the same, only today, an interview with actress Selma Blair with host Robin Roberts resonated with me.

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In this interview actress Selma Blair shares her journey of living with MS – Multiple Scoliosis, a disease in which the immune system eats away the protective covering of the nerves. It can affect the brain, spinal cord and the optic nerves in your eyes. Aside from causing problems with vision, it affects your balance and muscle control, just to name a few. She has the most aggressive form of MS, and it has now affected her speech, as you’ll notice in her interview – spasmodic dysphonia, as well has her walking, which she now relies on a cane for assistance.

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Once again I saw yet another disease trying to strip away the life of a woman and first and foremost a mother. I can relate to her, as I myself am living with Chiari Malformation. It makes you forget all that you knew, the life you knew and emerges you in a new life that is so foreign it may as well bring you to your knees. At times not even knowing what hurts more, as it becomes nearly impossible to vocalize what is wrong and what one is psychically feeling.

In this interview actress Selma Blair mentions …

an experience while having to take her son to school about a mile away, when returning home, having to pull over mid way to take a nap. I can’t take my kids to school, physically my driving is limited, and when I do, it must be close to home. And I understand the need, that dire need to nap. It’s an overwhelming feeling, it takes over your body and mind, and you absolutely have to lie down – ASAP, and sleep.

shame, shame that comes with having chronic pain and a disease that inevitably prevents you from being the mother you desire to be. And all you can do is what you can, to the best of your ability.

telling her son. She mentions that it wasn’t at all difficult sharing her diagnosis with her son. And I agree! Telling the children is so important. In my case, we’ve been open with the children, from why mommy needs quiet, why mommy needs to sleep, to why mommy needs to visit the doctor and why mommy needs to do an MRI. It is paramount to keep the children in the loop!

‘what gets you through those difficult days?’ … she gets in bed and doesn’t move. You just can’t do it all and it’s fine to feel crappy. Her son gets it and she has learned not to feel guilty. This is such an important message. A message to all those parents, that feel the need to play a role they can no longer play, the one where they can do it all, without the need of a break. When you’ve been diagnosed with something like MS or Chiari Malformation, you will have those days where you can’t move, where you get stopped in your tracks and can no longer move. Don’t do more than what your body can handle, put the guilt aside and live your truth. As she said, ‘it’s fine to feel crappy.’

If you haven’t seen the interview, I encourage you to do so, spreading awareness is essential as it motivates others to come out of the shadows and not feel ashamed or alone. When you voice your experience, you not only give a face to the illness, but you help others that are going through the same.

A-

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Chiari Sister, I See You

Chiari Sister, I See You

As a stay at home mom, I frequently think about other moms that are in my position. It’s no secret that the stay at home parent doesn’t get enough credit. The day to day seems lost in translation to many, except the one living it. And often we need the reassurance, because as mothers – humans, we want to be seen and loved.

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Whether you have Chiari Malformation + Syringomyelia or any other illness that physically impairs you from feeling your best, know that you are doing your very best. I often compare myself to the wrong people, to those that don’t have physical pain and not needing to be medicated for pain relief.

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As for the stay at home parent living with chronic pain though, the day to day is different and is a tiny bit more challenging. And for me, the physical pain can cause me to have self-doubt, so today, to my chronic pain brothers and sisters, I want you to know, I hear you and see you.

I want to reassure you that you are enough.

Just in case you haven’t heard it today, you did good!

You did more cleaning than your body could handle. It’s OK, not to do more, your body will thank you later.

Yes, it’s OK, the rest can wait.

You folded the laundry that had been sitting in the basket for over a week – no judgment, you did it!

You cooked a meal with love, and that’s all your family could ask for.

You’re pushing through the pain with every step you take – you’re a warrior!

Don’t be hard on yourself, you’re 1 in 1,000 uniquely designed people and not everyone will understand – and that’s OK!

Push through, shower; push through, brush your hair; push through, push through, push through.

Take a break, a much needed break.

Know that your illness doesn’t define you – you are beautiful, believe it.

You are so loved, and you are just as beautiful on the inside as you are on the outside.

You are not alone.

Chiari sister – I see you.

A-

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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

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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Reblog Wednesday: My story — God’s Whispers of Truth

In my short blogging journey I can say, that I’ve come across some great people here on WordPress – phenomenal! These individuals are going through their own struggles yet still find a way to find strength and continue to find the light through the chaos that life can sometimes be. This is where today’s share comes in, I want you to meet Vivian, a fellow blogger, a sweet mama of four, wife and warrior fighting TBI – traumatic brain injury. I share her story in hopes that it allows you to know that what you’re going through today, you will get through because of Him.

Cast all your anxiety on him because he cares for you. 1 Peter 5:7

When I was diagnosed with Chiari , I can’t tell you I didn’t feel alone, I can’t tell you I didn’t feel scared and I can’t tell you I felt hopeless. But with time, things became clear and I became aware that through my diagnosis God has been helping me, helping me with patience and helping me accept myself, as I am – illness and all. He’s ahead of it all, ahead of any diagnosis and ahead of the plans He has for me.

A-

Welcome, my name is Vivian and I’m a TBI warrior, homeschooling mom of four and wife to a great and hard-working man. As a Christian walking through the valley of brain injury and recovery, I can not stress enough how much the power of God’s strength has held me up and given me courage and […]

via My story — God’s Whispers of Truth

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