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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Unapologetic and Living With Chronic Pain

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It’s been with me for so long that I forget who I was before my Chiari diagnosis. The pain-free, care-free days are behind me. I have enough pain meds too embarrassing to say. There are days I want to go on without them – and feel human.

As time has gone by I’ve realized how much time I’ve spent trying to make others understand the depth of my chronic pain. I can’t change the way people perceive my illness, my diagnosis, my feelings, my physical limitations, nothing! The ‘ole ‘but you don’t look sick’ gets old quick. I know myself, what my day to day looks like, and I, myself know exactly what I have to live with – and that is enough.

There’s are certain feelings of guilt that come with chronic pain. The guilt of not being the mom I want to be, the wife I want to be, the daughter, friend, etc. and not living to peoples expectations of who they want me to be.

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I am not physically able and available and that is nothing I should continue to be ashamed of. I can’t be present in others lives as much as I’d like – or at all. I am physically unable to do many things, and only desire to push myself to my limits for my children, my family – no one else. Others expectations should not affect me, the Instagram worthy pictures of family outings should no longer tug at my heart, yearning those days to return to my own life. This is my perfect life, I am perfectly chronically in pain and will continue to be until my days end. I’m not sorry for others not understanding what I live with. I’m only sorry I’ve spent so much time convincing them my words and behavior are due to the constant struggle of battling with chronic pain while being positive. I will not allow others to cut me with their words. There is no need for excuses, I’m struggling and I don’t owe anyone an explanation for my absence.

Because no one is worth allowing them to break me down.

Happy Saturday.

A-

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Reblog Wednesday: I’m more than just a Mom — Momma Meets World

This reblog comes from Momma Meets World where she speaks on asking herself, who she is, who she is as a whole, as a person, as an individual. It struck a cord with me as Mother’s Day is rapidly approaching. As a stay at home mom often times I feel defined by just that, a stay at home mom. And nothing else. I’ve too often felt like there’s a certain shame behind being a ‘stay at home mom.’ As if there’s nothing interesting, nothing exciting, nothing substantial behind the title. I’m not even speaking solely on mom’s, perhaps you’re a single dad, or single mother, or someone going through anything that has a title attached to it that has a negative cognition.

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Why has society placed a negative stigma over parents wanting to raise their kids at home?

And why are some stay at home parents – as myself, seeking to put more on their plates then what they already have? 

Are we trying to prove something? And to whom?

Truth be told, stay at home moms are not at home eating Dum Dums (lollipops) all day – I know, shocker! In my quest to put my ‘stay at home mom’ title on the side somewhere, I realize I’ve done just that, fill  my plate – to the rim. And you can see more here, on the different things I have going on aside from caring for my kids at home. Yes, granted, because of my diagnosis I do these things from home, however they do  take up my time nonetheless. Also, I’ve realized that there’s no other title more important to me than that of a parent, of a mother and that of a stay at home mom.

If you’re on this quest to redefine yourself or rediscover yourself, know that your kids don’t see a title, but rather a loving parent.

In your own quest to find yourself, don’t lose who you are for the sake of proving society wrong, or anyone else wrong, do things for yourself, for your family and know that at the end, all will be well.

A-

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It’s taken me a very long time to realize that I’ve lost who I am. Who is Monica? A few weeks ago I woke up feeling numb. I’m not sure if I felt sadness, or darkness, or anything for that matter…I just felt blank.

via I’m more than just a Mom — Momma Meets World

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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.

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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

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Reblog Wednesday: It’s Ok To Have A Bad Day — MakeItUltra™

I share with you today a post from Dr. Perry. It’s such a reassuring post, full of truth and honesty – a must read!

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As a stay at home mom, let alone mom, I too often feel the pressures of being the ‘perfect’ mom and meeting societies expectations of their definition of a mom. This is far too difficult and overwhelming. I can say that these thoughts are also due to judgmental parents, parents wanting to scrutinize other parents, while they themselves don’t have their [bleep] together. The stress that comes from these thoughts and the constant wanting to be ‘on top’ of everything and trying to go the ‘extra’ mile to try to make others perceive that I am that ‘perfect’ mother can be too much. It’s also close to impossible for me to physically do that because of the chronic pain that comes from living with Chiari + Syringomyelia. I do try remind myself to be easy, loving, and patient, but self motivation can be hard on days where optimism is nowhere in sight.

I believe in having a good laugh as well as having a good cry. In being present and acknowledging your emotions. It’s not being negative, it’s being honest. It’s also not going by what the world expects from you, it’s what you believe to be what’s right for you. It’s also not pushing your body to the point where it retaliates and begins shut down. In my opinion sadness is also needed to truly appreciate when we are happy. How would you know happiness if you haven’t felt sadness?! These sad days will also be some that won’t last for long. And as Dr. Perry pointed out, balance.

We need balance in our lives, everything in our lives are teaching moments, take those moments and learn from them.

Also, knowing what to take on and what not, knowing what things are best to let go, because somethings are just not worth the emotional turmoil.

-A

By Dr. Perry, PhD “Bad times have a scientific value. These are occasions a good learner would not miss.” ~Ralph Waldo Emerson I believe in maintaining a positive attitude in my life. But I also acknowledge that life is not perfect. It is impossible to live your life in an inexhaustible positive state of mind […]

via It’s Ok To Have A Bad Day — MakeItUltra™

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Happy Meme Monday: Parenting + The Hunger Games

If there’s one thing I’ve learned about parenting is not to judge someone else’s parenting –  speaking about toddlers especially. Have you heard the saying, ‘terrible twos’?! Yes, they were wrong, there’s the terrible twos, threes and fours. Maybe even beyond, but who am I to judge?!

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Have you been present when a mom – or dad, is clearly struggling with their child, you know, and then you see the parent trying to kneel down to the child’s level, whispering in the child’s ear, all in hopes the child listens, only to land on deaf ears?! I know the feeling. I’ve seen that, I’ve experienced that, and it all can be a bit brutal!

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Here’s to supporting one another in parenthood in this task of raising our children and surviving the process.

A-

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Nail File Friday’s: Neon Yellow + Gray Nail Art

I’ve been in search for the perfect neon yellow color, you know that really bright yellow, possibly glow in the dark, possibly border line in-your-face yellow, yes, that one! At a recent trip for new nail polish, I came across this beauty from Orly, so vibrant and with the clear top coat, it just makes it even more amazing! With nail art, the idea is not to do anything overly complicated because as a mom, I know, as beautiful as nail art is, I don’t have time for anything overly intricate. And when picking nail polish colors, get out of your comfort zone, try something new and try new shades – you won’t regret it!

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Nail Polish Used: Orly Road Trippin (neon yellow) and Essie Chinchilly (gray)

Nail Tools UsedNail Brush and the French Manicure Stickers – Mix Styles I used the thick straight lined sticker for the pinkie finger. They’ll work as an easy guide for nail art or you can use scotch tape.

Steps For Nail Art:

Step One:  1 Coat of ‘Seche’ Base Coat

Step Two: I painted all the fingers, excluding the ring finger, in gray. Allow the nail polish to completely dry – these stickers are really sticky so you need to be sure the nail polish is completely dry before you apply the sticker to begin the nail art. To achieve the angled nail art on the thumb, you can use the nail labels or scotch tape to help you achieve a straight line – remove it while the polish is still wet, clean up the sides of the nail by simply dipping the nail brush in acetone, after each nail. For the pinkie finger – allow the gray to dry completely, and then with a nail sticker, place it in the middle, pressing gently on the sides of the nail and using the neon yellow, paint over the entire nail, including the label, you can do two coats, depending the amount of yellow coverage you want – remove the label while the yellow polish is still wet.

…. Allow the nail art to completely dry to avoid smudging ….

Step Three:  1 Coat of ‘Out The Door’ Top Coat

This is optional ….

‘Cuccio’ Cuticle Oil – Milk & Honey  – Cuticle oil will avoid your cuticles from drying that can happen from the nail acetone, it helps keep your cuticles moisturized.

A-

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