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

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