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

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