Brain Surgery May 9, 2013 – Chiari Malformation

max-van-den-oetelaar

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. 

Try Amazon Prime 30-Day Free Trial 

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-

Follow my YouTube channel for easy nail art tutorials – click and subscribe!

Photo: Max van den Oetelaar

Shop warm-weather workwear at NORDSTROM. FREE shipping, pick up in store and more.

Advertisements

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.

Try Amazon Prime 30-Day Free Trial 

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

Visit my YouTube channel and subscribe for easy to do nail tutorials.

Shop the latest denim from Topshop at NORDSTROM.

“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.”

Try Amazon Prime 30-Day Free Trial 

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.”

Related image

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.

A-

Find my YouTube channel here for easy to do nail art tutorials.

Guys, find everything you need for your next vacation at Nordstrom.

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.

Try Amazon Prime 30-Day Free Trial

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.

Wal-Mart.com USA, LLC

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-

Have you visited my YouTube channel, please do so, and subscribe!
Shop the latest denim from Topshop at NORDSTROM.

Reblog Wednesday: I Asked God: A Facebook Post From A Friend — Something to Stu Over

This post for ‘Reblog Wednesday’ couldn’t have come at a better time. The thoughts of wanting to feel better physically are reoccurring thoughts, coming in too often throughout my day. And the fact that I can’t change my circumstance or diagnosis is evident in this post and is the perfect reminder of things I conveniently choose to forget. This ‘Reblog Wednesday’ is from a blogger I hold dear and near to my heart, Stuarthis honesty, love for Christ and life, is what I appreciate from reading his work. I couldn’t appreciate him more than I already do.

This post unraveled the truths of my reality. I can either learn to accept my reality or continue to live in the falsehood of reminiscing of what my life once was – life without the prescription medication and physical pain. It’s up to me. If I can only touch ground, ‘come back to Earth,’ as they say, and stop living in the clouds, I’d be able to open my eyes to see my life as it is. And perhaps only then will my sense of purpose fuel my desire to live a more happy and fulfilled life.

Try Amazon Prime 30-Day Free Trial

The conversation with God in the post reminded me of my own conversations with God.

I  want to tell God what to fix in my life …

my diagnosis – fix it, reverse it,

my physical pain – take it away,

my old, ‘normal self’ – bring her back,

my finances – increase it,

my brain / head – make it stop spinning,

my son’s autism diagnosis – make it better,

my happiness – give me more of it.

And all the while, I’ve been praying for what I cannot change. He’s saying surrender, trust me, leave it to me as I do all things for a reason – beyond your humble comprehension. The reasons for it, all will be revealed in due time – patience. And love, love is what I need, it’s what I should be praying more for, so that I may accept my diagnosis with love, accept things that I will not be able to change.

The trials and tribulations are only there to get me away from worldly things and closer to Him.

Have a blessed day.

A-

I asked God to take away my habit. God said, No. It is not for me to take away, but for you to give it up. I asked God to make my handicapped child whole. God said, No.. His spirit is whole, his body is only temporary. I asked God to grant me patience. God […]

via I Asked God: A Facebook Post From A Friend — Something to Stu Over

Have you seen my latest YouTube nail tutorial?!

Wal-Mart.com USA, LLC

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.

 Try Amazon Prime 30-Day Free Trial

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.

adam-jang-260876-unsplash.jpg

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-

Shop Coats for Now and Later at NORDSTROM.

Reblog Wednesday: Lies I Tell Myself: IV — chiariconversations

This weeks ‘Reblog Wednesday’ has come at the perfect time, and it’s by none other than Michelle over at Chiari Conversations. She’s a fellow Chiarian and her vulnerability and honesty is like breathing fresh air each time I read her posts. If you have neurological issues, or are a fellow Chiarian yourself, please follow her journey along!

Try Amazon Prime 30-Day Free Trial

And I say it comes at the perfect time because I have not been quite myself, the body pains have increased, my left leg and foot have been getting increasingly numb and the vertigo, well, the vertigo is a pain in the rear end! I’m going on 6 years since my brain surgery for my Chiari Malformation and every day feels much like I’m going through a slow death – only I’m still here and my brain is being squished by the minute. The stabbing pain behind my neck doesn’t subside and what seems to be the never ending hospital / doctor visits can make me feel much like an elderly than a young mom.  As Michelle clearly states, a few years ago I really don’t know how I could have handled these constant headaches. It’s not your casual headache, ‘you missed a meal, you are a little stressed’ kind of head ache – no my dearest friend and reader, this is a, run and close the blinds, turn off the lights, turn off the volume to everything, including the neighbors barking dog and let’s hibernate for say, a few weeks – kind of headache! The one where you momentary just wish to be a vampire, because lets face it, I wish the world around me was pitch dark, complete darkness.

If you have Chiari Malformation or not, maybe you are dealing other health issues and can relate …

The feelings of wanting to feel like wanting to enjoy life / social gathering without having the next day or even weeks be filled with even more pain and misery. Yes!

The feeling of not wanting to be told ‘you’re strong’ but know that I’d rather lay in bed in a fetal position because I can’t take the pain. Yes! 

The wanting to go to the store and not have to worry about my left leg – body, being overstimulated and being at risk of falling in public. Yes! 

The wanting to go out to a public place, say, church, etc. and just setting it on mute because the chatter and noise level is too loud for my brain to handle. Yes!

The need to want to be ‘able’ and not ‘unable.’ Yes! 

The feeling of constantly needing help, because lets face it, I can’t do it all – literally. Yes!

The need to want to tell scream people to ‘get.to.the.point’ because conversations overstimulate my brain. Yes! 

The wanting to stop being told, ‘but you look good’ because I know that if I looked like how I felt, I’d scare even my own offspring. Yes! and Yes!

What are some of your new normal’s?

A-

It can be difficult to really KNOW whether the pain is normal or not when dealing with neurological issues. It doesn’t help that pain is personal even in the temporal sense. Five years ago, I WOULD NOT have been able to handle this level of constant headache. I would have thought I was dying. Today, […]

via Lies I Tell Myself: IV — chiariconversations

New shoes for the new year at NORDSTROM.

Check out my latest YouTube video and subscribe!