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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Brain Surgery May 9, 2013 – Chiari Malformation

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May 9, 2013 is marked within the deepest part of her soul. 

It’s only brain surgery they said.

8 hours into a place of the unknown, she drifted to a deep sleep. 

You never know who or what may change your life – until it does.

And the 8 hours are up, she awakes to a new life – a life of chronic pain that can only been seen in her face.

It’s an invisible illness they said. 

She struggles to maintain her composure.

How does one live with pain, deep pain, pain that doesn’t discriminate and doesn’t stop to ask you your name.

SHE does, she struggles, she cries, she hurts, she screams, she writes, she draws, she smiles, because when time doesn’t stop, she can’t stop.

And when she asks for help, he says, I can’t take the pain, but I can give you something for the pain.

She continues to scream the silent scream.

Be grateful, be thankful – they say.

But when one has no other choice but to be strong, then strong she is. 

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May is Mental Health Awareness Month and being that our mental health is just as important as your physical health, I encourage you to get screened, get help or ask for help. There are both adults and children going through some type of mental illness – break the stigma, it’s not bad, you’re not crazy and you can get better by getting help.

A-

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Photo: Max van den Oetelaar

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“Hang In There”

I suspect you already know that with every chronic illness come a few doctors appointments – or many. I had to see my doctor recently as the pain in my neck doesn’t get any better and the medication was running low, so back I went to see my Neurologist. There is a strange thing that happens but with each MRI comes a new result. In reviewing my last MRI on his monitor I noticed a curve on top of my neck in the shape of a letter ‘C’ you could say. But we simply continued talking and moved on. However, I couldn’t stop thinking about it and asked him about it. He said a curve like that is normal say on an 80 year old, but not on someone my age. The two surgeries I’ve had, the first in 2013 and the other on 2017, both have been entered through the back of my neck, so my neck has taken quite a bit. The result, it’s caused the top part of my spine to collapse – hence the letter ‘C’ shape, the other result, pain, the remedy, more medicine. We will try a new medication to manage the pain and come back to revisit the issue. I thanked him for his time and as I’m leaving he says, “hang in there.”

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Those simple words have taken over my mind. How many times does something unprecedented happened? And you, “hang in there” or you have absolutely no choice but to do just that?! Aren’t we all doing just that for different reasons, for the sake of your own sanity, because you’re going through a break up, a job loss, marriage issues, financial issues, whatever the case maybe, you’re “hanging in there.”

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As anger wanted to creep up inside me, I thought of hope. The word hope. The hope that this will continue to help me gain patience for myself and my body, and hope that I will continue to live life, this new life with much gratitude, the life with physical pain, but life nonetheless.

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

LIFE OF A MOM WITH CHIARI 1 MALFORMATION + SYRINGOMYELIA

This rare disorder has quickly changed and altered the course of my life. So, my hope through this outlet is to raise awareness for it. I think the most important thing like everything, especially an illness is early detection, early diagnosis and ultimately receive treatment is essential. I can’t stress that enough. The importance of knowing what you have is key. So, if you’re feeling any kind of way, overly tired even after getting a good nights sleep, rapidly putting on weight or loosing weight, have ongoing headaches, having unbearable back aches, etc., go get yourself checked! I know many people have a fear going to their doctors out of fear, fear of being told they may have something, like an illness. But understand that this will allow doctors to properly treat you if something were to arise and time is always of an essence.

Chiari Awareness Picture

The changes that have happened due to  In 2013 Life Began with Chiari + Syringomyelia have been things that have affected my entire family. My life as a stay-at- home mom having Chiari and Syringomyelia has affected the way I do everything has changed. I make the changes to accommodate the levels of pain that I may feel on that day.

A few of the changes I’ve made are …

 shop online

  have family movie nights in the comfort of our home

 bring the ice cream home

⇒ As far as cooking, if you’ve read More About Me you know I am Nicaraguan and I love cooking and baking. It’s such a stress reliever, but it’s then been limited.

So, overall I have really had to change my way of thinking to care for myself, to foresee situations, for instance locations I may be traveling to, perhaps on vacation. So, have self awareness. Also, don’t feel afraid or guilty to say no, make changes to your plans or feel bad to say no to people. Just know this is your honest truth and you come first. You can read more about that here Life Perspective After Chiari + Syringomyelia Diagnosis I get pressured into feeling “normal” but what is normal? Because I do consider myself normal, just not the definition of everyone else’s normal. This is a chronic illness that comes with chronic pain. Chiarian’s are often called Zipper Heads, because of the scar that is left behind our necks from decompression surgery. It’s a scar that I was once afraid of showing but have realized that everyone wears a scar. Some scars are just seen while others are not. You can wear your scar on your arm from a fall, on your face from a burn, behind your neck from decompression surgery, scars from c-sections – such as myself from my 6 littles or on your heart from a breakup or loss.

I also find ways …

⇒ to sit and play with the kids, we love to draw, paint and do puzzles.

⇒ I spend countless moments with them cuddled up in bed, reading a book or watching an Elmo or Peppa Pig video – a few of their current favorites.

This is an invisible illness and symptoms can flare up at any time. So, never be ashamed or embarrassed to alter your day. I have noticed that simple things like smiling or am seen outside my home, is quickly misinterpreted as me miraculously being cured and feeling better. However, a smile simply means that you’re trying your best to get through the day.

-Ana

Life Perspective After Chiari + Syringomyelia Diagnosis

When I was diagnosed and operated for Chiari 1 Malformation I had three young little ones, my oldest being in kindergarten at the time. So, I arrived to the ER in May 2013 and never imagined the diagnosis that would result from that visit.  You can read more in depth of my story in my post titled In 2013 Life Began with Chiari + Syringomyelia So, after the neurosurgeon came in to my hospital room and told me I needed emergency Craniotomy or brain surgery, I requested to leave home to get things in order before the surgery. The mom in me wasn’t ready for surgery, I wanted to get the house in order before my absence. I can’t ever seem to get my mind to stop, it just never stops. I was in observation for a couple days before my surgery day and during this time I was able to do homework with my daughter from my hospital bed. I was also able to inform her school of the situation that the family and I were having. It really did take a village to get through surgery and recovery.

 

Then you fast forward to 2017 when I had Laminectomy surgery for Syringomyelia, this time I had six little ones – and still do. The recovery hasn’t been easy but it’s also helped me see my husband and the little faces of God’s perfect creation looking back at me. Children really do give you the inner strength you thought wasn’t in you, the courage and fight you thought you didn’t have. I now, few years later look at this disease in a different perspective. I’m not well, probably won’t ever will be and that’s OK. It’s about accepting things for what they are and stop trying to change things that can not.  If I decide to physically shop at a store, I have to know the store, I have to know the layout, so that my shopping trip is as quick as possible. I like to call this my new normal as opposed to something being wrong. There is no normal, there is no right or wrong way your health should be. Also, know that you don’t have to try to make other’s understand what you’re going through, try to explain this rare disorder you find yourself living with. This could be such a burden and so frustrating. If you have even one person you can rely on, that’s great and if you know of another Chiarian, lean on them! Also, feel free to be present in your pain, know it’s OK to not have a good day when living with Chiari, especially when this disease is physically unseen, it’s an unseen disability.

-Ana

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