beehask

[beehask]

Two weeks post opp!

The staples are gone. Thank god. Let’s talk progress. I have not thrown up since surgery. I actually have an appetite. I can use my left hand.

After my staples removal I can nod my head yes.

Okay. So these are simple things but such a huge deal.

Since the last blog.

I lost my hair.

All of it.

I’m bald.

No. Seriously.

We still don’t know why or how but my hair was coming out so much we had no choice but to shave it.

I’m still on restrictions. No lifting over two pounds. No driving. No Fun stuff.

Do I regret surgery? FUCK NO! Surgery saved my life. It’s not been easy these two weeks but I’m alive and on the road back to myself.

The scar is healing beautifully. So that’s a plus.

How do I feel?

Uhhhh. Well I have my moments. I’m not healed. Obviously so I’m still in pain. Some days are better than others.

Days after coming home from icu I lost my dog.

My best friend.

So life is throwing curve balls.

I lost my dog the night I lost my hair. So I’m emotionally not okay.

Everyone is being insanely amazing and supportive but I still have to do this emotional healing on my own.

I’m just thankful I’m alive.

[beehask]

So. I have brain surgery on Tuesday.

Que the panic!

I’m sitting here attempting to pack my bags for the hospital. I’m completely overwhelmed. I’m overwhelmed with love and thankfulness. So many of you have decided to go on this journey with me. From the kind words, messages, calls, texts, cards, and even care packages. YOU will never begin to understand what this means to me.

I haven’t blogged much lately. I know. I know. I’m slacking.

The anxiety is building up. I’m anxious as a mothaaaa. I’ve been trying to keep myself busy. Trying to get everything in order for my luxurious stay in icu for... well we really don’t know how long I will be in the hospital. Everything is up in the air right now. Things are more than what we thought. They will most likely be removing some of my cervical spine. The bones in my neck. I have damage to my c1,4 and 5. Basically I’m about to be short.

So on top of brain surgery we’re now facing this.

A lot of you are like “omg this is so scary” YAS honey this is scary. But! I have not only a great surgical team, I’ll be in one of the best hospitals, plus I have a kick ass support team.

Surgery is paid for. I’m already pre registered at the hospital. All testing has been done. So now we wait and wait and wait until 430 am on Tuesday when I walk in the hospital to start the journey to getting better.

Please keep in mind. There is a chance this won’t work. There is a have surgery will undo itself.

There’s also chances that I will be back and better than ever.

We don’t know much as this point.

We don’t know what all they’re doing surgery wise until they get all up in my brains. We don’t know how long I’ll be in the hospital. We don’t know what recovery will be like. We don’t know anything except for the fact that my brain is bigger than yours.

Of course I will update each and everyone of you on my journey.

So. Get ready. Start the countdown! THREE DAYS! Let’s go!

[beehask]

QUESTION!

So. I guess I’ll do a Q&A of the questions I’m asked the most.

I’m sure I’ll do another round of questions soon. Okay. Here we go.

Q- Are you scared?

A- scared of what? I’m scared of frogs.

Am I scared of surgery? No. I dread the healing process.

Q- Are you going to die?

A- I’m no expert on life but I do know that everyone does die. Am I going to die from brain surgery? No. I’m in great hands and I know I have a lot more time on this earth to get on yalls nerves.

Q- Are you scared to die?

A- Nope. I’m afraid to leave this earth before doing the things I was put here to do. I have to watch all of my kids even bonus kids graduate. I have to watch all 709 kids bring beautiful and healthy babies into this world. I have three boys to dance with on their wedding days. The list goes on.

Q- Is surgery going to fix you?

A- I mean every surgery has its risks. This could be the first of many. I could still have a bunch of fun things that won’t go away. Or! I could walk away and bounce back better than ever!

Q- Does surgery cure chiari?

A- Unfortunately there is no cure for chiari.

Q- how long have you had cm?

A- honestly there’s no way of telling. I can tell you a lot of the cm symptoms I’ve had my whole life and never knew that these symptoms weren’t normal like I thought.

Q- Did your wreck cause cm?

A- No. luckily my wreck rattled me up pretty hard so this is how we found it. So for that I am thankful.

Q- What does your husband think about you having cm?

A- Girrrrrl! My husband is my ROCK! He has been so amazing and supportive. I can’t even put in words how amazing he has been with this journey. If it wasn’t for him I would be absolutely terrified.

Q- Will you go back to normal after surgery?

A- Wait. I was normal once?!

Q- Why are you so happy even though you’re sick and about to have brain surgery?

A- Man oh man. Have y’all seen my husband? Have y’all seen my kids and bonus kids? THAT! That is why I’m so happy. Nothing will ever get me down with them by my side.

I think this is most of the common ones. If you have other questions, ask them! I love these.

[beehask]

It’s a date! It’s a date!

As most of you know. We got the call for my surgery date. Unfortunately for most of you I waited to release that Information once immediate family was notified. We didn’t just get a surgery date. We got a pre opp date and some other appointments plus a pretty fun quarantine demand. So. The surgery date is February 18th insanely early in the morning. The pre opp and other appointment dates aren’t necessary to discuss. However. The quarantine is the fun part. Starting February 1st I basically am stuck in my house. Only to leave for appointments and obviously surgery. If anyone in my house leaves, they are to immediately come in shower and change clothes to avoid germs. Okay. You’re wondering why. I have to be insanely careful not to get cooties. I can’t get sick or be exposed to other germs because that is a huge risk. We have people coming to help with the kids while I’m in the hospital so they have to come quarantine too! So it’s like one big anti germ party! Woo. So basically no visitors at that point. Dolly Parton could knock on my door and we would have to tell her nope. No visitors. So it’s a serious and seriously annoying thing. We do understand why so we’re up for a challenge. I have dr masks as well to avoid cooties. So yeah I’ll look cool. This may seem easy but it actually stinks. I hate my family has to altar everything for me. I hate even more I have to miss Valentine’s Day, mad monster. Basically anything fun. I’m not allowed. I’m not gonna keep this one going because I’m tired and don’t feel good. So yeah. See ya later alligators.

[beehask]

the wait is over

So you had to wait for this post a few days, huh? Welcome to chiari. It’s a wait game. Its going forever without knowing. Its like a guessing game.

On December 4th my husband and I walked into the neurosurgeons office. Not knowing what to expect. What was next. They called me back. Did my vitals, asked some questions. You know, the usual. The surgeon walked in, he had two nurses with him. He introduced himself. He confirmed what we already knew. “You have chiari malformation type one and it’s 8.3mm” 

Out of the corner of my eye I kept looking at my husband cause of course he’s my safe haven.

The dr showed us my images, he even showed us on a skull exactly what mine looks like. He answered EVERY question we had. Even the most important “are you gonna ruin my hair”

He ordered another mri because we needed to see a few more things to move further. 

He literally calmed all of my fears.

The next appointment was set for January 13th (see why I made you wait)

We went to the mri. No big deal. Now here’s where we waited and waited.

The morning of January 13th we get a call that he is in surgery but we can see the nurse practitioner. 

Sure. Whatever. We met with her and it crushed my soul. She made it seem like my symptoms worsening weren’t my chiari. She almost seemed like she didn’t give a fuck. 

She said she would talk to the surgeon and see what he said but she didn’t feel anything was necessary or we could even do anything. I left feeling scared, hurt, mad, you name it.

This morning we got THE call. You know, that one.

First off she apologized for yesterday. Saying she wasn’t a chiari specialist so she didn’t realize how significant and serious everything getting worse is. She talked to the surgeon and we got the best news. Like better than getting 10 wings when you only ordered 8.

You ready for the news? Like are you really ready?

He said that it is a big issue everything is getting worse. So he made the decision………….

*insert jeopardy music*

HES READY TO DO SURGERY!!!!!!!!!!!!!!!

Hes going to order all of the fun pre app stuff and go ahead and schedule my surgery!

Here’s the part where I tell you. There is a chance surgery wont work. There is a chance things could get worse. There is a chance ill need more than one.

There’s a lot of chances. We decided this was worth the chance.

If yall thought this journey with me so far was fun then please understand there will be no more glamour until things start getting better. I’ll document the whole thing. The pre opp. The surgery aftermath. You name it. You’ll get to see what a chiari warrior is.

So buckle up. Hold on. LETS GO!

[beehask]

I  know a lot of you have been anxiously awaiting the part where I continue my last post. Unforunatly its not this post! I feel I’m lying to you guys. I feel you’re not seeing what goes on behind the scenes. Almost like Im hiding the real cm from you guys. 

Here goes nothing.

How has chiari affected me? Yikes. Uh its not good. Honestly. Its pretty horrible. 

Theres days I have to have help out of bed. Theres days I can’t use my left hand, I drop everything I hold, every day I cry. I hurt. I fall. I fall quite often. I lose my balance more than ever. Theres day I’m a shit mom because its hard to get off of the couch so we watch Netflix ALL day. I can’t keep food down. I throw up EVERY SINGLE TIME I eat. Sometimes I finish my food before it happens. Sometimes its two bites into food. Countless times a day you can find me laying on the bathroom floor crying because Im so hungry I can’t eat in fear of getting sick. There’s days my face or hands go insanely numb. Theres days I can’t even open my eyes my head hurts so bad. Theres days I stutter or can’t say words properly. There’s days I can’t even walk up the steps because I’m hurting, I lose my balance. Honestly the list goes on. You guys don’t see that though. Ive never let you in on that. Immediate family and close friends know. 

I feel like my kids are being shitted from a good happy mom. 

NOW! Let me tell you this, MY KIDS ARE ROCKSTARS! My kids will hold my hair when I get sick. My kids will hold my hand and rub my back. They know. They know mommy isn’t like she used to be. They often tell people “my mommy is sick”. This isn’t just the younger kids. My bonus kids are rockstars. They’ve brought water to the bathroom door because they’ll hear me cry out for water. 

My kids will often ask, Can I help mommy?

Honestly I hate this for them. They don’t deserve this. They don’t deserve to be stripped of the happy fun adventurous mom they once had. I was a fun mom! I was like the worlds okayest mom. 

I get asked often how is my husband with everything?

HE IS HEAVENSENT! He often helps me out of bed, he tells me to take it easy. He lays in bed holding my hand because he sees it on my face im miserable. He’s been so positive and supportive. The one food I can manage to keep down well sometimes is Burger King. That man is probably so damn sick of Burger King but he gladly takes me every time I feel up to eat. He always reminds me im gonna be okay. I’ll kick cm’s ass. He takes me to every appointment. He does so much research. He does so much that I can never repay him for all he does.

Heres the part I tell you since November I’ve lost well over 30 pounds. Which hey who doesn’t love weight loss? But not this way. I hate this. I HATE THIS! Do you hear me?!  People that don’t know about this often ask what’s  wrong? You look sick? im just sick. I always post these bomb selfies but I think you should see a real selfie. A selfie where im crying in the bathroom because I keep throwing up. This isn’t beautiful. It’s not fun. Its not what you think. It’s unfair. 

[beehask]

The day my world changed

I guess this is where I’m supposed to tell you about finding out about cm.

On Sunday October 27th 2019. I had just dropped my four year off with his dad and step mom. Twenty seven minutes after telling my sweet boy I loved him, everything changed. I was involved in a car accident. IN MY BRAND NEW CAR!!!!!!! I was taken to the hospital. They did tests. Referred me to multiple doctors since nothing was an immediate emergency. 

I was sent to have a million more tests. I wasn’t healing from the accident. Only getting worse. 

I had a follow up appointment to discuss a mri I had. 

I remember the doctor coming in. We were joking as usual. That’s the part where things became a blur. I remember hearing “well good news is what we thought was wrong, isn’t. Bad news is *

Insert blur* something something brain surgeon something something brain surgery. I smiled said thank you. Have a good day. 

I get home started talking to my husband and realizing this woman just told me Im being sent to a brain surgeon. 

WAIT A DAMN MINUTE?

I picked up the phone in panic. I asked her to tell me that again because it didn’t register with me

She  said “you have type 1 Chiari Malformation and are being referred to a neuro surgeon.

WAIT! Who is Kiara? What’s wrong with my brain. She informed me she wasn’t a chiari specialist so she couldn’t give me the details I needed. 

She told me how to spell it to do some research. 

I went outside. I cried. I screamed. I cussed. I was confused. Scared. I was every emotion. 

I immediately called my daughters grandparents. Her grandfather is a P.A. I was hoping he could help me. Help me understand what was going on. Nobody knew. We’ve never heard of this. Google only freaked us out that much more.

I didn’t want anyone knowing. I didn’t want pity. I didn’t want people treating me different. We informed immediate family. We told them we didn’t have much information at the time. Moments later the scheduling person from the surgeons office called. She was so friendly. She quickly scheduled the appointment. She asked if there was anything else she could do. With tears in my eyes I asked “am I gonna die? I have kids. They need me” she said honey were gonna take care of you. Don’t worry. 

THAT DID NOT MAKE ME NOT WORRY!

The next few days all I did was cry . Why me? My life is finally perfect. Why would this happen to me? I don’t wanna die! I researched and researched. Joined some support groups. That only freaked me out that much more. 

I had a good three weeks before I met with my surgeon. So you know that wait is killer.

Heres the part where Im gonna keep you guys waiting on the next part like I had to wait. Im evil. I know. 

[beehask]

Greetings Earthlings

Hi! My name is Bekka and this is the story all about how my life got flipped turned upside down and I’d like to take a minute…. Oh! Wait. Wrong story! So yeah. Im Bekka and I have type 1 Chiari Malformation. Im sure you’re wondering what chiari is. How do you pronounce it. Don’t worry we will get to that part. My daughter encouraged me to start this blog to help not only have my story heard but get awareness out there. So here’s that definition I promised. 

Chiari malformation (kee-AH-ree mal-for-MAY-shun) 

Chiari malformations are structural defects in the base of the skull and cerebellum, the part of the brain that controls balance.  Normally the cerebellum and parts of the brain stem sit above an opening in the skull that allows the spinal cord to pass through it (called the foramen magnum).  When part of the cerebellum extends below the foramen magnum and into the upper spinal canal, it is called a Chiari malformation (CM). 

Chiari malformations may develop when part of the skull is smaller than normal or misshapen, which forces the cerebellum to be pushed down into the foramen magnum and spinal canal.  This causes pressure on the cerebellum and brain stem that may affect functions controlled by these areas and block the flow of cerebrospinal fluid (CSF)—the clear liquid that surrounds and cushions the brain and spinal cord.  The CSF also circulates nutrients and chemicals filtered from the blood and removes waste products from the brain.

It causes spinal fluid blockage in some cases. 

Basically. There’s not enough room in my skull so my brain is falling out. YES your

brain can really fall out. I could also say my brain balls finally dropped!

The purpose of this is to let the world or the five people who will actually read this blog, go on a journey with me. 

This is the part where I tell you. I will have sad posts, angry posts, happy posts, you name it. It’ll happen. 

There is no cure for chiari there is treatments and even brain surgeries. Unfortunately. Life with cm is not easy. Its scary. God its scary. Its painful. Its discouraging. But this is my life. My fight. My story. My journey. You will see a different side of me. So. Here we go!