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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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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National Chiari Awareness Month – 2018

National Chiari Awareness Month – 2018

The month of September is Chiari Awareness Month. In May of 2013 I was diagnosed with Chiari 1 Malformation and Syringomyelia and my life since then has changed – tremendously. I remember going recently to a store, because it’s a place I visit regularly – they’re a sweet Vietnamese family, I’ve got the chance to get to know them. We were discussing Chiari the last time I went there, one of the daughters said, ‘besides going to the hospital when I was born, I’ve never been there.’ I was speechless, I know my way around – just about, every hospital in my area, I even know what hospital not to go to because they lack ‘my’ department – neurology. The difference between someone with Chiari Malformation, Syringomyelia, among many other different illnesses, is that we know too well what is like to be at a hospital – while others don’t. It’s an unfortunate truth.

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There are currently four types of Chiari Malformation and each are classified by the severity of the disorder and the parts of the brain that descend into the spinal canal. As you can see, I have type 1, this is when the lower part of the cerebellum called the cerebellar tonsils extends into the foramen magnum. This is where only the spinal cord would otherwise pass through. Chiari unfortunately goes un-diagnosed, and is first noticed during adolescence or adulthood, usually by accident during an examination of another condition. As it happened to me, I went into the ER in May of 2013 for what was suppose to be a quick ‘trip to the ER,’ but turned out to be far more serious than your typical ‘headache.’

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What surgeries have I had for Chiari 1 Malformation and Syringomyelia? As for the Chiari, in May of 2013 I had emergency posterior fossa decompression, here the surgeon created more space for the cerebellum as this relieves pressure on the spinal cord. At this time the surgeon also made an incision on the back of the head and down the neck area, and removed a small portion of the bone at the bottom of the skull, this is called, craniotomy.

In November 2017, for the Syringomyelia, I had spinal laminectomy in which they placed a syrinx shunt – this shunt (a flexible, tube like device, according to my surgeon it’s also less than the size of a hair strand in diameter) will remain in my body forever. The syrinx shunt diverts the fluid from the syrinx into another space in the body where it can be absorbed. There are a few locations where the fluid can be absorbed and this is what differentiates one shunt from another. The shunt I have is absorbed in the peritoneal space, also known as the abdomen. The space location is determined on the patients case and the surgeons personal preference.

Why spread awareness for Chiari Malformation? Without awareness there is no funding, without funding, there is no research, without research, there is no cure, without a cure, there is no hope. However, if not in my lifetime, maybe another’s, but I pray that there will be a cure for Chiari – someday.

Today, I’m still living with a number of ongoing symptoms such as difficulty swallowing, headaches, vertigo, imbalance, difficulty concentrating, etc. which also includes chronic pain. I need to be monitored for changes that can occur in the CSF flow or cerebrospinal fluid. I’m currently experiencing severe numbness on my left side, especially in my face and tongue – you’d never know it if you’d see me. However, I finally have a great neurological team that is helping by monitoring me, via MRI’s and managing my pain levels, via medication, as best as they can. It’ll always be a process, but it’s a process that with patience, it’s as tolerable as it can be.

The perfect cure for worry, is to trust in God. 

And in light of my series ‘Happy Meme Monday’ I’ve decided to include some Chiari Malformation memes. Enjoy.

These memes – sum it all up. Have a blessed Labor Day.

A-

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Random Acts Of Kindness Award | 2018

This is incredible! Such a wonderful way to remember a few positives in our lives. So often it’s easier for me to dwell on what’s going wrong, I forget what’s going right. This is one of those moments. Thank you Stuart this is so amazing – if you haven’t read his post, you must! It’s a true testament of never being alone in your struggles, God is always listening, God is always providing for you and sending His angles to help you. I continue to see His providence in my family – daily.

Here are the rules:

• Tell who you nominate and why.

• Copy and share the picture that shows the award, posted above.

• Share a paragraph of something that impacted your own life in the way of receiving kindness or how you extended kindness to someone else.

• Nominate anyone or share to your own page. If you so choose to Participate. Tag or ping-back to the original person who nominated you, or the original post.

The first act of kindness that came to mind was one from back in 2013. I had just recently been diagnosed with Chiari + Syringomyelia laying in my hospital bed awaiting my decompression surgery. I was feeling so lost and scared – but did well in hiding it all, not wanting to worry my family even more. I had three little ones home at that time, the youngest being 2 years old. My husband although a great support, still had to be home to care for our little ones. When my 8 hour decompression surgery was over, I was in so much pain and still feeling alone and scared. My first night after surgery, not being able to sleep, the night shift nurse came in – she had the sweetest voice, so comforting to hear, began to talk to me. I can tell she wanted to put me at ease and we began conversing. We spoke about our families, she spoke about her baby girl and we continued until she saw that I drifted to sleep. I will always treasure such sweet memory. She was my angel that night, she saw that I had my medicine for my physical pain, but she also wanted to comfort my soul, my heart. There are angels, that I’m sure of.

My nominees:

Julie

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Bethany

Shantanu

Alyssa

Caz

My nominees – as for you too, I admire you all for so many things, but most of all, you encourage me through your wonderful words, your output on life, your perseverance to make things lighter and more positive. Thank you!

A-

Exercising With Chiari 1 Malformation

Exercising With Chiari 1 Malformation

I often refer to my short life time as, pre Chiari life and post Chiari life. The things I used to do and the things that I can no longer do. And I say that I can no longer do, because of the physical limitations I have now since my Chiari + Syringomyelia – a congenital diagnosis. It’s baffling to know how much a diagnosis can be the result of so many life changes. The most simple things can now take so much effort and energy – not to mention can bring on some unwanted physical pain.

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My pre Chiari life, the married life, the stay at home mom life with kids included in particular enjoying lots of the outdoors. My days consisted of going outside daily. I especially loved to run, so I would get the littlest ones in the stroller while the rest peddled beside me in their tiny bicycles. We had a daily schedule that included the outdoors, after breakfast we went outside with the ball and spent sometime breathing in some fresh air and after lunch, right before their nap time, I’d get us all ready so that this mama could get a nice jog. So, simple, so refreshing, something the children really looked forward to.

My life post Chiari includes a lot of doctors appointments – from regularly visiting the neurologist and primary, to regular MRI’s to CT Scans, medications – most on trial run to ‘see’ if they help with the pain, what pain you ask, back pain, neck pain, head pain, anything from vertigo to headaches, imbalance and sensitivity to light from the sun to headlights, just to name a few.  My weight with all this going on has – understandably has been fluctuating and now being at the heaviest. Aside from the obvious and that is the pregnancies I’ve had, Chiari isn’t much help in this area either.

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When it comes to exercising, Chiari can really feel like it’s holding me back. I know what you may think and I’m really trying not to be ‘Negative Nancy’ but, with the physical pain I have, it’s hard to get outdoors. My goal is to lose the weight but not break my back in the process – literally.

Here are some helpful tips I’ve found while researching safe ways to exercising while having Chiari Malformation.

  • First and foremost speak to your doctor. The doctor can provide an exercise program to get you started and give you the OK to begin.
  • If you’ve been through Physical Therapy, do you remember the exercises you would do with your therapist? They test you to know how well you can bend, walk around, balance, reach, check your heart rate while you’re active, all these go hand in hand with the exercising that you should and should not be doing.
  • Choose an exercise based on the symptoms and extent of the malformation.
  • The right exercise can ease the stress on the neck.
  • There are low impact exercises that you can try such as walking, swimming and pilates
  • Walking, be sure you’re wearing comfortable walking shoes.
  • Pilates, strengthens your core, abs, obliques and lower back, it helps keep your body balanced and stable. It keeps the spine stable and safe. This one is recommended by the department of neurology at the hospital where I was operated for Syringomyelia but they also specialize in Chiari Malformation.
  • Chiari Malformation patients have problems with the vertebra and disc in the cervical spine resulting this area to be unstable. So, many exercises including lifting weights could potentially be dangerous.
  • Lifting weights is not recommended as this can put pressure and strain on the neck. Straining can increase CSF pressure and if there’s an obstruction, this can lead to problems. What is CSF? It’s the medical abbreviation for ‘Cerebrospinal Fluid’ which is a watery fluid that is continuously produced and absorbed and that flows in the ventricles within the brain and around the surface of the brain and spinal cord.
  • Find a gym or classes in your area that offer programs for people with disabilities.
  • Speak to your doctor before beginning an exercise regimen and if you’re going to change it or begin a new one. Your doctor will know if your condition will allow for more activity or will recommend you keep your exercise light.
  • And finally, always listen to your body, never overexert yourself and don’t over do it. If you begin to feel weak, dizzy or light headed, stop right away.

If you have Chiari – or know of someone, and are doing an exercise regimen, let me know in the comments, I’d love to know what it is.

Hope you have a great day.

-A

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Surgery – Faith Over Fear

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Surgery he said. Another surgery – I need a minute.

The preparing, the mental preparation, the anticipation and the recovery. One can never be used to surgery – I can never get used to surgery, one can never feel at ease knowing they’ll be seeing yet another surgeon or specialist, one can never be used to going into that doctors office and explain what’s wrong. You can definitely can never get used to being seen, most of the time half naked, being written on, poked on, needles ready and all eyes focused on you. They’re ready to see you break down, they’re ready to comfort you and they want to see your reaction. One can never be ready to be told, “it’s time” and have a team of unknown medical professionals wheel you in the operating room. The operating room, such a cold place – why’s it so cold, so unwelcoming, full of devices, beeping sounds all around, people with masks trying to make you feel comfortable, but how?! How do you feel comfortable, it’s cold and it’s the unknown – all over again. It’s happening all over again.

The surgeon called me last week and said, “results came in, good news, it’s benign, but it needs to be removed, when’s surgery good for you?” Once again, I felt alone, cold and afraid of the unknown, but why, I’ve been down this road countless times – too many to count. Either that or I’m just embarrassed to write the number down. In my short years, I’ve met my share of doctors, surgeons, nurses, hospital rooms and operating rooms. I’ve felt my share of needles, had my blood drawn plenty of times but am still uncomfortable. The hospitals make me feel uncomfortable, but it’s during these times when you leave it all in His hands and allow it all to be left up to the doctors. No matter how many times I’ve been down this road, I can never get used it.

Faith over fear knowing that my heart and soul will be at peace knowing that this is my journey. My journey, my story to. There’s no one stronger than you, no one with unique health circumstances.

This makes you special – I am special because I am 1 in 1,000 due to Chiari and it reminds me to slow down and live at the moment.

Have a wonderful night.

A-

The Liebster Award – 3

The Liebster Award

I want to thank The Pink Herald’s Blog for this nomination! It’s always such a great feeling knowing you are doing something remotely right that you’ve touched a fellow blogger enough to think of you. Thank you Lynn! If I can describe her for you in one word it would be, survivor! She’s a survivor! Get to know her, her blog, her story and how she created her blog in memory of her sister Kathi.

What The Award Is:

The Liebster is an award that is given to bloggers by other bloggers. Liebster in German means sweetest, kindest, nicest, dearest, beloved, lovely, kind, pleasant, valued, cute, endearing, and welcome.

The Rules:

Thank the person who nominated you

Answer the questions about yourself provided by your nominator

Nominate 5-11 fellow bloggers with fewer than 1000 followers who you think deserve the award

Create a new list of questions for your nominees

List the rules in your post

Let your nominees know of your nomination personally

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Questions:

1. Who would you most like to meet (dead or alive) and why?

I would have loved to have met my paternal grandfather – he was Korean. My grandparents divorced and I only got a chance to meet my paternal grandmother that has been deceased for a few years. I saw her a few times on trips to Nicaragua. She was such a strong lady, so creative, so loving. As I grew up, either I was teased at school or was nicknamed for my Asian facial features, specifically my eyes. As time went by and now as an adult, we finally were told about my paternal grandfathers side of the family. It was such an amazing feeling knowing that even if only to have his Korean features – I’m happy to know something of him lives in me. My children also have my facial features and it just reminds me of how far our blood line goes – incredible!

2. Who is your favorite author?

One of a few, the author Lauren Weisberger that has written titles like The Devil Wears Prada – great by the way! I’ve been recently itching to read When Life Gives You Lululemons – have to get that!

3. What is one thing you would like to accomplish in your lifetime?

In my lifetime, to know that I’ve done a good job raising the children God has sent to me. I try to raise them to best of my abilities and pray that I can continue to lead them on the path to knowing the Lord as their one and only true Father. As my life will not last forever, but the love of Christ will live in their hearts forever.

4. What is your biggest regret?

Regret, I try not to look back at my life with regret. However, there are a few events, heartbreaks, friendships that I would have liked to have gone differently, maybe have been more honest. I would have wanted myself to have been stronger and able to have been willing to speak on what was in my heart, things have remained left unsaid – on my behalf. Isn’t that unfortunate, when you didn’t speak on something and would have liked to?! Ugh!

5. What is one thing you could start doing to make a difference in someone’s life?

Aside from living with chronic pain and spending most of my days on edge due to the pain. I try not to be snappy or disrespectful to people. I try but if you come to me with some nonsense about life’s hardships, to me – I apologize in advance for my lack of interest. It’s hard to want to make a difference in someones else’s life when I’m barely making a difference in my own. I do want to make a difference through this outlet – my blog. And outside of this outlet, I try to be a good ear to whomever needs one, be a good listener – not always a talker. Again, living with chronic pain on a daily basis can get in the way of trying to be a ‘good’ friend by societies standards, but I try my best. If I think of you, I try to reach out and take advantage of that moment and send a text or anything to let you know, I’m thinking of you. I can definitely start wanting to build stronger, better friendships.

My Nominees:

Four Jordans

Cole Campfire Blog

Parks & Recreation

Sparkkling Thoughts

Journie 2 Woman

My Questions:

(I’m going to borrow one here from Lynn, thank you Lynn!)

  1. Who is your favorite author?
  2. If you could recommend this busy mama a book that you think is worth the read, which would it be?
  3. When was the last time you did something for yourself?
  4. If you could only choose one, what would be the one quality you look for in a friend?
  5. How would you like to be remembered?

Thank you blogger friends for participating, I think your blogs are amazing! I can’t wait to read your answers!

Have a wonderful day!

A-