‘I Look To You’

This morning while trying to get somethings done for my social media accounts, I decided to put on some background music. And I decided on this song, ‘I look to you,’ by the late Whitney Houston. I don’t normally work while listening to music, it’s really distracting and I get nothing done. My work area needs to be quiet and in order. But the calling was there, for me to go back to this song, and it lifted me.

I’ve been connecting with others with Chiari and although I’m grateful, it also tends to try to pull me down. On one hand I’m happy there others experiencing what I’m going through, but on the other, it’s incredibly sad to know there are others trying to get through their day with chronic pain.

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I get asked a few questions when someone realizes my diagnosis, and one that always sticks out is, ‘how do you do it?’ I understand because it’s almost dumbfounding to see this mother of six living with chronic pain. And there is no one answer, there is no perfect answer, actually there is no answer other than Him. He gets me out of bed when my body isn’t able to, He reminds me I am loved when I feel I’m a failure, He helps me take the steps when I’m in too much pain to walk, He holds my head when I feel it’s going to explode in pain, He helps me care for my children when I feel too ill, He reminds me to take my medication because He knows how much I dislike them, it’s Him, that’s how I do it – daily.

If you’ve never heard this song – or haven’t heard it in a while, I invite you to listen. It’s an amazing song, full of hope, because what you’re going through today you will get through by looking up to Him.

My favorite verse in the song, ‘After all my strength is gone, In you I can be strong.’ 

I Look to You
As I lay me down
Heaven hear me now
I’m lost without a cause
After giving it my all
Winter storms have come
And darkened my sun
After all that I’ve been through
Who on earth can I turn to
I look to you
I look to you
After all my strength is gone
In you I can be strong
I look to you
I look to you
Yeah
And when melodies are gone
In you I hear a song
I look to you
After losing my breath
There’s no more fighting left
Sinking to rise no more
Searching for that open door
And every road that I’ve taken
Led to my regret
And I don’t know if I’m gonna make it
Nothing to do but lift my head
I look to you
I look to you
Yeah
And when all my strength is gone
In you I can be strong
I look to you
I look to you
Oh yeah
And when melodies are gone
In you

A-

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When You Lack Motivation

I came across this picture and it gave me a great perspective on how big things have come from the modest of places – like a garage. How amazing is this picture?! What more motivation does one need?! I’ll be honest, I stared at it for quite some time.

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If there’s one thing you and I have in common is that there’s always something that is holding us back. We want to do something, great or small, but we create excuses that keep us from getting it done.

What do you want to do?

Where do you want to go?

How will you get there?

… What’s holding you back?

What’s holding me back? …. It’s either my illness, my family or some other excuse that I allow to convince me, that now is not the time.

I was once in a place where I felt stuck, frozen and hesitant about taking the next step.

I was ‘thinking’ about creating a YouTube channel, if you are too, I’d say, ‘just go for it.’

Or ‘thinking’ about creating a blog, if you are too, I’d say, ‘just go for it.’

Or ‘thinking’ about creating an online store, if you are too, I’d say, ‘just go for it.’

Or say an Instagram account, if that’s you, I’d say, ‘just go for it.’

Because the growth will probably be slow and the learning will take some time, but all that matters is that you’re doing what you’re passionate about – continue to grow, continue to learn, and let’s be honest eventually the money will come.

Lastly, if you’re living with chronic pain like I am, be patient. Our bodies are not what they were before our diagnosis, your body will guide you, get things done when you can – or pain levels allow, prioritize things, create a schedule for yourself – even if it’s one task a day. You’ll see that slowly but surely things will come together and things will get done.

Do you struggle with staying motivated? What keeps you moving?

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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Sunshine Blogger Award – 3

Thank you to the very witty and lovely blogger Sean over at The Land Manatee – if you haven’t read his responses, you must! Because who wouldn’t want to be sipping on some ‘Cuba Libre’ otherwise known as ‘una mentirita’ or ‘little lie’ while trying to decide whether to travel to Italy or Greece?!

About the Sunshine Blogger Award:

This award is given to bloggers by other bloggers who feel they display positivity, creativity, and sunshine via their content. It’s an honor to be recognized by your colleagues and peers. It keeps the motivation high which is essential in the writing community.

The Rules For the Award:

  1. Thank the blogger who nominated you and link back to their blog.
  2. Answer the 11 questions you’ve been asked.
  3. Nominate 11 new bloggers and ask them 11 questions.
  4. Inform your nominees through commenting on their post.

Sean’s Questions for His Nominees:

1. Why did you start blogging?

To shed some light on Chiari Malformation and Syringomyelia.

2. What have you learned along the way and how have you improved as a blogger?

Consistency is key. Also, connecting with your subscribers, being able to answer to the comments is appreciated.

3. What’s a challenge in life you overcame?

Lack of self-confidence. I’ve realized that you’ll never truly make others happy. Because when others are unhappy with themselves, they’ll find a reason to put you down, no matter what you do. So, I’ve learned to overcome and stop trying to make others like me and have gained self-confidence along the way.

4. Who has been a big influence on your life?

Because I live with chronic pain, I’ve learned to look up and not down. In other words, Jesus.

5. Do you have a hidden talent? If not, what do you wish it was?

I like Sean’s answer to number 9 – patience, God knew what He was doing when He sent me my little ones, it’s not always easy, but definitely worth it.

6. Where would you like to be in your life in 5 years?

I’d love to move somewhere in the Orlando area. We’re Disney Annual Pass Holders and can’t get to Disney World as many times as we’d like – even living just a few hours away.

7. What would your dream job be and why?

It’d be something in the legal field. I was working in the legal field before becoming a full time stay at home mom, and my heart loves the legal world.

8. How would you describe your perfect day?

No medicines and a pain free day!

9. If you decided to move to a new country or city, where would you want to live and why?

Somewhere in the Orlando area, close to the Disney World parks. I’d like to take advantage while my kids are still little.

10. What famous person or celebrity at any point in history would you like to meet and what would you want to talk about or ask that person?

I would love to meet this super star – in my eyes, Keala Settle from the movie “The Greatest Showman.” The song “This Is Me” has become an anthem in my heart and I’d love to let her know just that, ” … I’m not scared to be seen, I make no apologies, this is me.”

If you haven’t seen the movie, or heard this amazing woman sing, I share this clip with you below.

11. In what fundamental way have you changed over the years?

A health diagnosis in 2013 changed me – for the better or worse, I’m still trying to figure that out, but it’s definitely helped me appreciate today.

My Nominees:

Simply Chronically Ill

The Eclectic Contrarian

All The Shoes I Wear

My Questions for My Nominees:

(taken from Sean)

  1. Why did you start blogging?
  2. What have you learned along the way and how have you improved as a blogger?
  3. What’s a challenge in life you overcame?
  4. Who has been a big influence on your life?
  5. Do you have a hidden talent? If not, what do you wish it was?
  6. Where would you like to be in your life in 5 years?
  7. What would your dream job be and why?
  8. How would you describe your perfect day?
  9. If you decided to move to a new country or city, where would you want to live and why?
  10. What famous person or celebrity at any point in history would you like to meet and what would you want to talk about or ask that person?
  11. In what fundamental way have you changed over the years?

Thank you in advance to all my nominees!

A-

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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!

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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

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Reblog Wednesday: Badass — Real Life of an MSW

There have been so many moments in my life where there has been self doubt. The moments where I think of doing something and I hold myself back. Because as the saying goes, ‘I am my own worst critic.’

The negative thoughts often are too hard to avoid and the positives are often hard to believe.

If I’ve ever thought of starting to live, to breathe, to be free in my own skin, I think that time is now. The time to take the leap, the jump, that jump that’s going to take me to where I want to be, that time is now. I was reading a story on a Texan woman police officer, she was and still holds the record for being the oldest woman to ever been sworn in the academy in her city, at the age of 54. Her story was both astonishing as it was inspiring.

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In the few months that I’ve been blogging many have touched my heart, inspired me and motivated me, as living with Chiari + Syringomyelia can really take a toll to ones spirit. But as I battle my days with chronic pain, this post by Real Life Of An MSW was a great reminder of the abilities that lies within a woman. It reads, ‘a badass woman starts her projects …. doesn’t wait for an invitation.’ This here reminded me of how regardless of my physical pain, everyday I still need to continue to push through – keep pushing. Since I began my journey here – I’ve surprised myself more than anyone, I’ve open an online shop and just very recently Simple Nail Designs – my YouTube channel.

What the mind can overcome when the will to thrive rises.

It’s also a reminder that a woman is far greater than anything, far greater than she can even imagine, she’s strong, she’s powerful, she’s determined, because she’s simply, ‘a badass.’

Happy Wednesday.

A-

A Badass woman doesn’t wait for people to ask her to do something or notice how great she is, she says. She starts her projects, take up space, or raise her hand because she doesn’t have to wait for an invitation. -Jennifer Baumgardener Positively Purging-I welcome your feedbacks in the comments and your likes […]

via Badass — Real Life of an MSW

Nail File Friday’s: Red + Gold Nails

This week I wanted to make something extremely simple – yes that’s possible! You know when you want to do something, but feel so busy, too tired and out of energy. But, know that certain things just should be done. Doing my nails this week resulted in just that. As someone that lives with chronic pain, things can easily slip by, so it’s essential that I try to motivate myself in finding ways to get things done for myself as easily and efficient as possible. Because as they say, it’s the small things.

The red nail polish in this look is so vibrant and the gold makes it look so fancy! It can even be recreated for a holiday party, work gathering, festivity or celebration.

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Nail Polish Used: I used the color ‘Really Red’ but this is the next best thing Essie Russian Roulette (bright red) and Good As Gold (gold)

Nail Tools Used: Nail Brush + Dotter  for cleaning the sides of the nails and dotter for making dots on all nails.

 

Step One:  1 Coat of ‘Seche’ Base Coat

Step Two:   2 Coats of the red nail polish (three strokes per coat on each nail)

…. Allow the nail polish to completely dry before doing any nail art ….

Step Three:   Using a piece of aluminum foil, place a bit of the ‘Good As God’ Nail Polish on it, dip the dotting tool and create a few dots just on the side of the nail – wipe the dotter clean by dipping it in acetone after each use, going in a zig zag like pattern, continue to create the dots

…. Allow the dots to completely dry before applying the top coat ….

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

This is optional ….

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

A-

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