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.

Image result for chiari awareness month

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.’

Shop NORDSTROM for sandals you need right now ☀️ FREE shipping, pick up in store and more.

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-

Visit my online store for Chiari Malformation awareness merchandise.

Blogger Recognition Award 2018

I received this incredible recognition by James, he’s over at Myplace3187. I’m a relatively new blogger and James is one of the first bloggers that I began to follow, since then he’s been an amazing support for my page, as he has for me. Thank you James for it all and for this ‘Blogger Recognition Award.’

blogger-award

The Rules:

  1. Thank the Blogger who nominated you and provide a link to their blog.
  2. Write a post to show your Award.
  3. Give a brief story of how your blog started.
  4. Give two pieces of advice to New Bloggers
  5. Select 15 or more bloggers for this award.
  6. Let each Nominee know you’ve Nominated them and leave a link to your post.

How I Started Blogging ….

There are a few reasons behind having started this blog, however the main one was bringing awareness to my illness – Chiari 1 Malformation + Syringomyelia. It’s a congenital condition in which the brain tissue extends into the spinal canal. There are 1 in 1,000 people living with this rare condition. The great news – since I started this blog, I’ve connected with so many wonderful fellow ‘Chiarians.’ Although it isn’t a walk in the park, to feel their strength and support is what I’ve been wanting – to connect with those that are walking in my shoes. They are the reasons for this blog.

I’m also often called mom by six tiny humans and wife by a Marine veteran. So, here you will find a glimpse of my life, all that’s in between and my life with chronic pain.

Two Pieces of Advice For New Bloggers ….

  1. Definitely try not look at your stats – says the one that just looked at her stats! I know it’s hard, I know it’s there, I know numbers ‘don’t lie’ however those numbers will break you on a bad day. Keep focused, have patience and the rest will follow.
  2. Have a good thing ‘going’?! Don’t be afraid to monetize from your blog. Yes, I love to blog, I enjoy writing and if you have been a follower of mine, you’ve noticed that I have three days out of the week where I will absolutely try my best to blog because it helps me keep myself on track. My life is a bit busy so I appreciate a good schedule. However, with that said, blogging is a lot of work, hours, at times researching and overall time consuming! Shocker, I know! So, if you love what you’re doing, you’re spending countless – perhaps hours a week, preparing a post, I say, bring on the money! Look into getting paid for doing what you love. As a stay at home mom, this blog has been the first thing – besides my my online store, to get my focus away from the home. So, if we can incorporate our ‘work’ and passion or love, and find an opportunity to monetize off it, I say, try it – do it! I’m still trying to get there, it’s definitely a slow process but it’s a process none the less. As they say, ‘you never know until you try.’ Is profiting off your blog something you’re doing or thought of doing – I’d like to know your thoughts on that. Thanks in advance!

My Nominees Are:

The Eclectic Contrarian

Simply Chronically Ill

God’s Whispers Of Truth

OJs Pride

Loudest Minds

Invisibly Me

Fight MS Daily

Journie 2 Woman

Wonky Brain Blog

Something To Stu Over

To my nominees, know that I enjoy your blog and that I appreciate you!

A-

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

Wal-Mart.com USA, LLC