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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Sunshine Blogger Award – 3

Thank you to the very witty and lovely blogger Sean over at The Land Manatee – if you haven’t read his responses, you must! Because who wouldn’t want to be sipping on some ‘Cuba Libre’ otherwise known as ‘una mentirita’ or ‘little lie’ while trying to decide whether to travel to Italy or Greece?!

About the Sunshine Blogger Award:

This award is given to bloggers by other bloggers who feel they display positivity, creativity, and sunshine via their content. It’s an honor to be recognized by your colleagues and peers. It keeps the motivation high which is essential in the writing community.

The Rules For the Award:

  1. Thank the blogger who nominated you and link back to their blog.
  2. Answer the 11 questions you’ve been asked.
  3. Nominate 11 new bloggers and ask them 11 questions.
  4. Inform your nominees through commenting on their post.

Sean’s Questions for His Nominees:

1. Why did you start blogging?

To shed some light on Chiari Malformation and Syringomyelia.

2. What have you learned along the way and how have you improved as a blogger?

Consistency is key. Also, connecting with your subscribers, being able to answer to the comments is appreciated.

3. What’s a challenge in life you overcame?

Lack of self-confidence. I’ve realized that you’ll never truly make others happy. Because when others are unhappy with themselves, they’ll find a reason to put you down, no matter what you do. So, I’ve learned to overcome and stop trying to make others like me and have gained self-confidence along the way.

4. Who has been a big influence on your life?

Because I live with chronic pain, I’ve learned to look up and not down. In other words, Jesus.

5. Do you have a hidden talent? If not, what do you wish it was?

I like Sean’s answer to number 9 – patience, God knew what He was doing when He sent me my little ones, it’s not always easy, but definitely worth it.

6. Where would you like to be in your life in 5 years?

I’d love to move somewhere in the Orlando area. We’re Disney Annual Pass Holders and can’t get to Disney World as many times as we’d like – even living just a few hours away.

7. What would your dream job be and why?

It’d be something in the legal field. I was working in the legal field before becoming a full time stay at home mom, and my heart loves the legal world.

8. How would you describe your perfect day?

No medicines and a pain free day!

9. If you decided to move to a new country or city, where would you want to live and why?

Somewhere in the Orlando area, close to the Disney World parks. I’d like to take advantage while my kids are still little.

10. What famous person or celebrity at any point in history would you like to meet and what would you want to talk about or ask that person?

I would love to meet this super star – in my eyes, Keala Settle from the movie “The Greatest Showman.” The song “This Is Me” has become an anthem in my heart and I’d love to let her know just that, ” … I’m not scared to be seen, I make no apologies, this is me.”

If you haven’t seen the movie, or heard this amazing woman sing, I share this clip with you below.

11. In what fundamental way have you changed over the years?

A health diagnosis in 2013 changed me – for the better or worse, I’m still trying to figure that out, but it’s definitely helped me appreciate today.

My Nominees:

Simply Chronically Ill

The Eclectic Contrarian

All The Shoes I Wear

My Questions for My Nominees:

(taken from Sean)

  1. Why did you start blogging?
  2. What have you learned along the way and how have you improved as a blogger?
  3. What’s a challenge in life you overcame?
  4. Who has been a big influence on your life?
  5. Do you have a hidden talent? If not, what do you wish it was?
  6. Where would you like to be in your life in 5 years?
  7. What would your dream job be and why?
  8. How would you describe your perfect day?
  9. If you decided to move to a new country or city, where would you want to live and why?
  10. What famous person or celebrity at any point in history would you like to meet and what would you want to talk about or ask that person?
  11. In what fundamental way have you changed over the years?

Thank you in advance to all my nominees!

A-

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Reblog Wednesday: In Defense of Stay-At-Home Moms — Autism in Our Nest

As a stay at home mom whom didn’t stay home from the beginning, I must say the transition was rather smooth. I loved my position in the corporate world, but once I had my oldest, my heart yearned to be with her and raise her myself.

I came across this post from Autism Family Power where she mentions coming across an article where a working woman asks, “what do stay at home moms do all day?” The question wasn’t ill intended, but rather out of curiosity.

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I chuckled a bit and then had the sudden urge to detail and justify my role at home. However, each of us has different reasons for our decision to stay at home, and the role of a parent that stays in the home is like no other. His/her role comes without a financial earning, without breaks, days off and too often are running on fumes.

However, the internal satisfaction of making sure my kids are taken care of, taking care of my families daily needs and each of my children’s individual needs be it school or otherwise, is beyond any pay check I could ever receive. The ‘tasks/jobs’ are endless, from scheduling doctors appointments, to making sure my son is thriving in school since his autism diagnosis, to potty training – still doing it. The list goes on and on. All the while praying I am doing a good enough job at raising good, compassionate citizens. Also, caring for myself as I have Chiari 1 Malformation – a congenital disorder.

So, if you’re a stay at home parent or not, our goals are all the same. We’re all caring for our homes and our families needs to the best of our abilities, being in the corporate world or not.

A-

Recently I read an article where a woman asked Stay-At-Home Moms what they did all day. At first I got defensive, but changed my mood. Read more about this, here!

via In Defense of Stay-At-Home Moms — Autism in Our Nest

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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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Actress Selma Blair And Her MS Diagnosis

If there’s one thing I enjoy doing, is watching early morning TV while sipping on coffee. The older children have gone off to school and my littlest babies are still in bed asleep. This morning was the same, only today, an interview with actress Selma Blair with host Robin Roberts resonated with me.

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In this interview actress Selma Blair shares her journey of living with MS – Multiple Scoliosis, a disease in which the immune system eats away the protective covering of the nerves. It can affect the brain, spinal cord and the optic nerves in your eyes. Aside from causing problems with vision, it affects your balance and muscle control, just to name a few. She has the most aggressive form of MS, and it has now affected her speech, as you’ll notice in her interview – spasmodic dysphonia, as well has her walking, which she now relies on a cane for assistance.

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Once again I saw yet another disease trying to strip away the life of a woman and first and foremost a mother. I can relate to her, as I myself am living with Chiari Malformation. It makes you forget all that you knew, the life you knew and emerges you in a new life that is so foreign it may as well bring you to your knees. At times not even knowing what hurts more, as it becomes nearly impossible to vocalize what is wrong and what one is psychically feeling.

In this interview actress Selma Blair mentions …

an experience while having to take her son to school about a mile away, when returning home, having to pull over mid way to take a nap. I can’t take my kids to school, physically my driving is limited, and when I do, it must be close to home. And I understand the need, that dire need to nap. It’s an overwhelming feeling, it takes over your body and mind, and you absolutely have to lie down – ASAP, and sleep.

shame, shame that comes with having chronic pain and a disease that inevitably prevents you from being the mother you desire to be. And all you can do is what you can, to the best of your ability.

telling her son. She mentions that it wasn’t at all difficult sharing her diagnosis with her son. And I agree! Telling the children is so important. In my case, we’ve been open with the children, from why mommy needs quiet, why mommy needs to sleep, to why mommy needs to visit the doctor and why mommy needs to do an MRI. It is paramount to keep the children in the loop!

‘what gets you through those difficult days?’ … she gets in bed and doesn’t move. You just can’t do it all and it’s fine to feel crappy. Her son gets it and she has learned not to feel guilty. This is such an important message. A message to all those parents, that feel the need to play a role they can no longer play, the one where they can do it all, without the need of a break. When you’ve been diagnosed with something like MS or Chiari Malformation, you will have those days where you can’t move, where you get stopped in your tracks and can no longer move. Don’t do more than what your body can handle, put the guilt aside and live your truth. As she said, ‘it’s fine to feel crappy.’

If you haven’t seen the interview, I encourage you to do so, spreading awareness is essential as it motivates others to come out of the shadows and not feel ashamed or alone. When you voice your experience, you not only give a face to the illness, but you help others that are going through the same.

A-

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Reblog Wednesday: I Asked God: A Facebook Post From A Friend — Something to Stu Over

This post for ‘Reblog Wednesday’ couldn’t have come at a better time. The thoughts of wanting to feel better physically are reoccurring thoughts, coming in too often throughout my day. And the fact that I can’t change my circumstance or diagnosis is evident in this post and is the perfect reminder of things I conveniently choose to forget. This ‘Reblog Wednesday’ is from a blogger I hold dear and near to my heart, Stuarthis honesty, love for Christ and life, is what I appreciate from reading his work. I couldn’t appreciate him more than I already do.

This post unraveled the truths of my reality. I can either learn to accept my reality or continue to live in the falsehood of reminiscing of what my life once was – life without the prescription medication and physical pain. It’s up to me. If I can only touch ground, ‘come back to Earth,’ as they say, and stop living in the clouds, I’d be able to open my eyes to see my life as it is. And perhaps only then will my sense of purpose fuel my desire to live a more happy and fulfilled life.

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The conversation with God in the post reminded me of my own conversations with God.

I  want to tell God what to fix in my life …

my diagnosis – fix it, reverse it,

my physical pain – take it away,

my old, ‘normal self’ – bring her back,

my finances – increase it,

my brain / head – make it stop spinning,

my son’s autism diagnosis – make it better,

my happiness – give me more of it.

And all the while, I’ve been praying for what I cannot change. He’s saying surrender, trust me, leave it to me as I do all things for a reason – beyond your humble comprehension. The reasons for it, all will be revealed in due time – patience. And love, love is what I need, it’s what I should be praying more for, so that I may accept my diagnosis with love, accept things that I will not be able to change.

The trials and tribulations are only there to get me away from worldly things and closer to Him.

Have a blessed day.

A-

I asked God to take away my habit. God said, No. It is not for me to take away, but for you to give it up. I asked God to make my handicapped child whole. God said, No.. His spirit is whole, his body is only temporary. I asked God to grant me patience. God […]

via I Asked God: A Facebook Post From A Friend — Something to Stu Over

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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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