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.

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

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The KonMari Method + Clutter Free Home

The KonMari method is a category-by-category organizing system created to simplify your life. These books were written by Japanese cleaning consultant Marie Kondo. In her books she seeks to help you organize your home by decluttering it. She gives you tips to make it easy to detach yourself from items you don’t need. This has come hand-in-hand with both of my diagnosis because it’s helped me be able to see which material things are important versus those that are not. She suggests to surround yourself with things in your home that spark joy. These are two of Marie Kondo books and they both relate to the KonMari method The Life-Changing Magic of Tidying Up: The Japanese Art of Decluttering and Organizing and Spark Joy: An Illustrated Master Class on the Art of Organizing and Tidying Up

 

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Since my surgeries for my rare disorders In 2013 Life Began with Chiari + Syringomyelia looking back overtime it’s all given me a chance to be present and to live in the moment. I like to keep things that have significance to my family. While minimalism isn’t for everyone, I think that to a certain extent we all want to free ourselves from the chaos that clutter can create. The KonMari method also suggests that you begin with your closet. This is all in an attempt to encourage you to begin to simplify and organize your home. She mentions starting with your closet, but I think it’s just a matter of starting somewhere! I also think the truth behind our attachment to things may be emotional or sentimental. What I like to do with my little ones is to only keep clothes they will benefit from in the short months to come. Otherwise, I’ll pass it on to someone else or take it to my local Goodwill. So, once something has served it’s purpose in my home, anything from toys no longer being played with, it’s donated and out the door. Also keep in mind the intention for why something came in to your home, does it continue to serve a purpose in your home?

The older kids and I will also go through toys multiple times a year, such as before and after birthdays. As occasions like these can bring lots of new things that can cast a shadow over our older belongings. Also holidays or a move can be a great time for cleaning out clutter. At times even things that are given to the kids as gifts that are not necessary or they already have, will instead be given to a child in need. My little ones will be fully aware and this serves as a teaching lesson in giving back.

It’s simple …

⇒ declutter your home

⇒ change it to simplify

⇒ organize it

⇒ leave only those things that spark joy

⇒ get rid of old/bad habits + turn your home into a clutter-free space

It’s changing your relationship with things you own, taking control and freeing space in your home and your life. I believe this method will help you process things as being just that, things. I also remind myself to remove the guilt that can come from letting things go and see them as something that no longer serves purpose in my life. Once you begin to change this behavior of surrounding yourself with stuff, you’ll shop more consciousness and truly surround yourself with meaningful objects. Otherwise you will continue to label things as “necessary” and never let go of anything.

Hope you’ve had a great weekend.

-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