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.

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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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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