Note To Self For This New Year – 2020

How incredible that I’ve made it this far?! I want to start the month off by writing a few truths to myself and what version of me I want to be moving forward.

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In living with chronic pain there are always different feelings, one minute I’m tired, the next I’m happy, excited, the next I’m drained and filled with intense physical pain. So, as much as I can’t control nor predict how I’ll be feeling physically, I want to be a little more positive moving forward. It can be draining to feel as if I’m a walking ‘Debby Downer.’ Or am I just imagining that?! Perhaps I am – I tend to be a little dramatic.

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Note to self for this new year – 2020. Be honest with self.

+ Stop feeling sorry for your illness. Things happen, trust in Him that all will be well.

+ Yes. You are sick. Accept it.

+ No one’s judging you for your illness. They just don’t know better.

+ Take your medication, including your vitamins, they’re good for you. Less pain equals less mood swings.

+ Schedule your doctors appointments. It is for your well being. If not for you, for your family.

+ Take charge of your life.

+ Don’t make commitments. You can’t keep them. Not because you don’t want to, but because you can’t predict how you will feel.

+ Your children will admire your strength and determination to keep going – despite it all.

+ Stop wanting people to understand your illness. They don’t. And they won’t. And that’s OK.

+ People don’t understand the energy that it takes for you to be open to ‘doing’ things – accepting visitors etc. It’s OK.

+ Put your energy into those who matter.

+ Be patient. Patience will get you far.

+ Be loving with yourself. Love yourself. Your body will love you for it. The weight gain is minuscule to what really matters. THYROID equals your weight gain. No one is entitled nor deserves to know this. You do. And that’s enough.

+ You’re sick. Accept it. Once you do, you’ll see life differently and only then, will you truly begin to live.

I’m sure there are one or two things that may have slipped my mind. But for now, this is a good start. These truths are not to demean or shame myself, they’re to help me see who I am and who I’d like to be moving forward.

A-

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Birthdays Call To Be Grateful

Another year, another day to feel incredibly blessed and grateful. It can be so easy to see the negatives, to see that things don’t go as ‘planned,’ as I’d like, as I wish they could be. But the storm doesn’t come in vain. It comes to teach lessons we may not see right away – in due time instead. It comes so that I may practice patience and love.

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And can I just add, thank you, your  patience with my being absent from this amazing community – for what feels like forever, is appreciated. Thank you!

A quick run down, my son that is in the spectrum / autism is growing up and while I am incredibly blessed to see his growth, it also comes with it’s challenges. My 5 year old daughter was recently diagnosed with Dyslexia, something that didn’t come as a shock, as I had already suspected she had it. If you have someone in your life with Dyslexia, I’d love to know more on it? Please share! And as for myself – well this mama is pushing through! Because He gives us grace to take on what would otherwise break us.

My final thoughts for today: Happy Birthday to this girl! To the one who continues to face challenges but refuses to let them define her, who’s carried SIX little ones when the professionals told her she couldn’t and to the one who refuses to give up!

YOU are AMAZING!

 

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Happy Tuesday!

A-

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Picture By: Brooke Lark on Unsplash

‘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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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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Netflix: Tidying Up With Marie Kondo

This morning GMA (Good Morning America) covered a story on a Netflix Original that has just begun! If you already know, or don’t, Marie Kondo is a Japanese best selling author. She is known for her expert advice on all things organization and I just so happen to have a deep love for all things organized. And this Netflix Original Series is based on the ‘KonMari’ method which is from her best-selling book, The Life-Changing Magic of Tidying Up. I also had written the post titled, The KonMari Method + Clutter Free Home, so if you haven’t read it, please do!

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The plot behind this newly original, Marie Kondo lends a helping hand to people in need of decluttering their homes.

In the interview linked below with Marie Kondo, one of the things that struck a cord with me is when she is asked, what is wrong with American’s, why do we have so much stuff, to which she responds, that the homes are huge. Which only got me thinking about the homes I’ve visited – those smaller spaces and large, and how every inch of the home is covered in stuff! Have you been there?! Perhaps it’s because I live with chronic pain, but living in a space that is begging to be cleared is not something that is appealing to me. Either way, my hope is that this inspires you to declutter your home to make it a more loving and inviting space for yourself and your loved ones.

https://www.goodmorningamerica.com/video/embed/60227303

I’m excited to watch and see how she transforms lives, one home at a time.

A-

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The Best Child Friendly Nativity Set

With little ones at home, I have to be very careful of the things I bring in the home and leave within reach. So, there’s a no-glass rule we go by because sooner or later, little fingers are bound to get to it.

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That’s where the ‘Little People Nativity Set’ – this is the updated set, comes in. I purchased ours years ago, perhaps in 2009, and it’s yet to let me down! My kids play with it, turn on the little angel to hear a beautiful melody and the best thing of all, it’s all plastic! I have the ‘Nativity Set’ and The Three Wise Men.’ I know the complete set is made up of three – it contains more animals.

Our family tradition includes getting the nativity set up. However, for picture purposes I photographed baby Jesus, but I will put him away and bring him out, as the children would say, for his birthday – Christmas morning. I’ve included a before and after because it’s exactly what happens once little fingers get a hold of this very cute set.

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