My Life With Medicine – The Chronic Pain Truth

When you’re living with chronic pain, medicine is a part of your life. The year is filled with doctor visits, follow-ups, tests, prescriptions and refills. The medicine helps relieve some of the pain. That sharp pain, the pain that takes your breath away – and not like in the fairy tale books. This is the type of pain that stops you in your tracks and makes you close your eyes in pain and at times brings on those silent tears. The ones that no one other than you knows about. You’re unable speak and find yourself closing your hand in a fist – from the pain. After a few minutes, that intense pain is gone. And you think, “I’ll take my medicine to help me get through the next one.” And I do.

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I take the concoction that the doctor thinks will truly work this time! He say’s, “take these two in the morning, this one for nausea, this one for vertigo and these 2 at night.” I see him on my next visit and tell him, it’s a go! It’s working, the combination that we’re trying is working!

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And because nothing is perfect, nothing comes without a ‘cost,’ I tell him about my side effects. The medicine although helping relieve the pain, discomfort, aches and the daily needle like pain, the side effects take time to accept. All medicine have side effects and that’s the truth. And my medicine, are for the most part, muscle relaxers. If you recall, what I have is all in the nervous system – the brain and spinal cord. These muscle relaxers cause a ‘sedation’ type effect on your body. It brings on fatigue and weakness, which in turn cause me to feel extremely tired.

It’s a feeling of having not had slept in a long time. That sleep that causes you to close your eyes while speaking to someone – oh but you don’t intend to be rude! You just can’t help it! And you sleep and sleep and sleep. Because the sleep is what removes you from the pain and for short periods of time, you’re taken to a place where you are in pain no more.

In turn for taking my prescription medicine …

I feel left out,

Alone and afraid,

Like a bad mom, wife,

Like I can’t keep up with life or my kids.

It’s caused me to …

lose friendships,

give up friendships,

cancel, and

feel frustrated.

Yes, it’s true! You take something on to then give up others. You give up the life you once knew, for the life that’s been handed. The new cards. The new circumstance. The life with chronic pain.

A-

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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

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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‘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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