Reality Of My Life

Waking up at 4 am with my heart going wild over life is hard (anxiety, stress and this wild heart disease). Why can’t everything be ok?

I never thought I’d still be a sick girl by now.

It’s actually a very, alone battle to be suffering for so long. Not having people understand… me looking “normal.

Every single day I wake up not knowing if it’ll be a “good” day or a sick day. It can change within seconds in my body too.

But I know, I look “normal”.

I went to my high school reunion two nights ago. It was a lot of emotions for me in a lot of ways. I was so sick in high school… that’s when I had meningitis… and I’m still dealing with it.

I’m still struggling that battle.. 10 years later?!

So many said how great I look and that I must be better than what they’ve heard of me online…

It’s crazy, that the day before at the same time I was in the er. My vertigo was crazy. The cyst on my head had increased a bit and my hemotologist was concerns that it had grown more on my brain and that’s what’s been causing all my messed up symptoms for the 2 months.

I was scheduled to get the mri today, but the way I felt had to be done. I had to get the results figured.

I remember laying in the bed just feeling so alone. Rous was with me and I appreciate him so much. But alone to the fact that it’s my whole body…. my whole body has been doing this er thing since I was 12? Why?

Why am I getting multiple mris a year for my brain? Why do my platelets still drop terribly low? Why do I feel so sick and messed up so many days?

But I look great right? I’m not sick anymore right? It could be worse right?

If you felt how I felt you wouldn’t ask me things like that. You wouldn’t assume you know how I’m physically and even mentally feeling.

It’s a battle in both ways.

Right before I was getting my mri, the man running the whole thing kept calling me friend, kept being caring, genuine, sorry I’m doing this (after reading my history he said). He changed how I emotionally felt with it all. He made me feel understood that I’m sick, cared for that I’m sick, ACKNOWLEDGING that my life has been hard and this suffering is very real.

I remember listening to Citizens and Saints as the whole mri noises are blaring in my head and I was crying, I felt so cared for my this random man? Why can’t I feel understood by those I know? Why did a man I just met understand I’m still sick and have been for so long?

My spirit was lifted in the midst of that mri. I felt thankful to God that He allowed me to meet that man. I told him after how much I genuinely appreciate the care that he gave me, the words that he said.

It’s so hard feeling so misunderstood with my health battle.

Just to have a few in my corner understand means so much for my being. Just to acknowledging that this is a struggle and they feel for me, care for me, understand I’m sick… means so much.

I’m still struggling with the severe trauma from the last brain surgery. My drs didn’t think it would be that bad…. it’s made me a different person. Good and hard ways. The Lord will use it and already has in SO many ways… that still makes it hard though.

Laying down on the couch all day is weekly, appointments are weekly, checkups are weekly, dr calls are weekly, er visits are often.

That’s my life. The reality is I’m suffering. The reality is I’m sick. The reality is about 4 people understand (not including Drs, nurses, counselors). Imagine going through so much sicknesses and only saying 4 people get it? It’s hard. It hard to my heaviness of feeling alone with it all.

Please stop asking when I’m having a baby. Please stop saying you’re so happy I’m not sick anymore. Please stop saying at least I’m pretty (makes me sick to my stomach even being reminded of people saying that). Please stop saying it could be worse. Please stop telling me to just smile more.

Please cry with me. Please a-knowledge that I’m still sick. Please feel sadness for each health event I have. Please don’t have your prayer be for kids but for my HEALTH. Please know my faith and trust in God is so much greater from all the sorrow that continues. Please don’t look at me and assume “I’m fine”. Please don’t compare. Please don’t give me advice. Please know it’s a continual battle. Everyday.

Well, it’s now 5:19 am. Maybe today I’ll feel “good”. ❤️

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I am thankful….

I am thankful…..

Able to drive after a year ❤️

That spring is now here.

My love for creating photos.

My sweet Dr who has given me to brain surgeries with care.

The ability to go to morning worship every single morning.

The older men in my life who I cling to, full respect, trust and wisdom that is needed from us all.

Living right by the beach for 6 months 😍

My Hemo/onco Dr since I was 16 and has cared for me and watched me go through so much, with love. And my sweetheart Dr since 12 is beyond still loving to me ❤️😭

My complete belief, hope, trust in Jesus Christ. My Savior, my Rock.

Finally able to start making actual food after a year of my brain not able to, and it’s so healthy and yummy!

The fun I have with creating our home 😍

My sweet Deb Larson in Eugen( hardest place to live for me) who would care for me and show me love SO much!

Able to have a small job as working with so many brands on my Instagram… for income! 🙌🏼 (sorry to the ones who think all photos of me advertising is bad 😂)

How even more clearer things about life has come to me such an intense year. ❤️

Having the best tenants who are some of the dearest friends 😭

My nurses over at DUBS

Peonies just bought and knowing they’ll bloom soon 😍

My husband truly desiring the Lord, growing so much more than I’ve ever seen, a genuine love to the Lord and me, so many gifts and skills that he’s beyond good at, the fact that we’ve been married almost 7 years!

Drinking coffee every single day 🙌🏼🤤❤️

The handful of people that I can vent to, cry with, understand me. (You all should know who you are😭)

Tell me one thing you are genuinely thankful for ❤️

Weep With Those Who Weep

So many times I just feel done with writing. I have so much on my mind and heart over all this. I feel like I don’t even know how to express all I’ve been through and so much I’ve learned from it.

There’s such a need for those suffering to truly have people understand how to be there for them.

You will go through suffering in your life. Not worth comparing it to me or anyone else popping up in your mind. You will have it though. That is life.

Life is not a perfect place. A life of joy, amazing health, sinless, all relationships 100% great 24/7..

It’s just not.

It’s real. It’s in the Bible. It’s full of so much.

My mind, heart, body has been through so much, and this year has just hit my extreme feelings of aloneness because of how much people think I SHOULD NEVER BE SAD… I could be worse… you know worse…. you’ve been through pain too… I need to be happy… have I been praying at all?…

Even writing out reminds me of how the majority (because there are some in my life who understand suffering- or long term sickness) of people just don’t get it.

I’m currently on a plane flying back from Arkansas (heyyy y’all!), reading my Bible, desperate to continue growing closer to God, understanding the word and feeding my soul.

There are verses right there-

WEEP WHEN THOSE WEEP -Romans 12:15

Whoever sings songs to a heavy heart is like one who takes off a garment on a cold day. Proverbs 25:20

Ok.. reread those. Seriously, right this moment reread them. It’s only two small ones.

Are you taking it in? Are you thinking, “oh dear she should be happy?”

Having gone through the hardest part of my life (still going through it folks, just because I look “normal”), I have really drawn myself in from the so many I know.

Over and over again I’ll get bible verses sent to me, songs sent to me, “advice” of why I should be happy. How alone do you think I feel. There have been times where I’m laying in a hospital bed crying with so much happening with my body and relieving a text of “love” of why I should be thankful and “happy”.

Breaks my heart the memories in my mind still. I feel no anger towards people just sadness. I know the 100s that have sent me these kind of things will do it until they go threw sorrow, somehow their eyes are open… or they just don’t I’ve heard.

To having a miscarriage when I thought I was done with seizures, my heart disease and my platelets were good, but spoken to of why I should be happy… that I had a miscarriage is mind blowing. Happy that the baby wasn’t older before dying? Still asked constantly when I’m going to try again… starting a couple months after my last brain surgery people have been asking and haven’t stopped. STOP asking people when they’re getting pregnant. You have no clue what’s going on with them. A day after my miscarriage someone had asked me when I was going to get pregnant. Wow, how sad I still am by that. But it’s something we must learn. I had not learned this, read things like this until after my miscarriage and my inability to be pregnant because of my health. Heartbreaking. Yet I want people who haven’t been through this to learn it now or very soon.

When I was sitting in a coffee shop the other day a group of women are there. One of them starts telling a story about her husband sitting next to a guy having a grand mal… she starts cracking up and all the girls do. Over a human having a grand mal. I’m sitting there so so saddened and overwhelmed with aloneness. Imagine watching someone you know and love sitting there having a grand mal. You would be so sad. You would be so worried. Me waking up from all my grand mals and not understanding what happened and the messed up pain in my brain and body after is something you can’t imagine. To be quick to hear others laughing about so so much sickness, sickness that makes you feel sad. Makes you have such a heavy weight of sorrow… is hard.

It needs to be learned and understood by those who aren’t going through pain and sorrow right now. But don’t you want to be able to truly be there for those you know who are sad and full of so much? TRULY there for them. Not there thinking you can cure. But there to help them be alive.

I can’t imagine what kind of person I’d be if I have not been through this. I can’t. I would not be the same person I am. I would not know how to be there for people. I would probably compare things, I would probably expect them to just be happy already, I would expect them to think how cool of a person I am for doing “something”.

When you’re there to just be there and care… wow. The difference it makes.

I’ve had people I thought I trusted over the years ask how I’m going and if open up, I’d cry… and I wouldn’t hear a word back, I would hear a joke made, I would hear comparison made, I would hear a “solution” made. Slowly and slowly over so many years of this I’ve lost trust. I have such few people in my life that I know would care for me. Truly care if I’m bleeding internally, truly care if I’m in the er time after time, truly care when another thing happened with my health. Truly care even when I’m out of the hospital…

Are you thinking of anyone in your life who needs this? We need it. We long for it. It needs to be learned. All of Job is about it. It’s not made up. It’s not the nowadays thing of… happy, happy, happy!

Weep with those who weep.

Being Real Video!!

img_5445New Youtube Video! Please Watch!

After having this video for over a week now, I’m finally going to share! The story of my life has been hard, sad, confusing, questioning, sorrowful, trusting, hopeful, passionate and desperate. I know there is a reason for EVERYTHING in our lives, and I’m so hopeful to be there. Opening up on my first video (link in bio) about my life journey, and already working on the second now! I would LOVE to get to know you, love to answer your questions, love to be there for those suffering! Those who can relate to what to say I SO want to hear it! So much love ❤️❤️

Hope in the Midst of Suffering 

As we are flying above the clouds right now, on our way to the Mayo Clinic. My mind is racing with so many thoughts. I feel like I’ve never felt this confused in my life. I don’t have a “normal” life. I have one full of so many bizarre, scary moments. In tears thinking of what just happened.
Two days ago I had a massive Grand Mal. I had driven up to my parents alone and it happened there. It feels like a dream I had. I just remember waking up on a different couch with 3 fireman over me asking me who the president was. My parents said it took 30 minutes after my seizure for me to actually come to and communicate. It took hours upon hours for my body to recover. I kept asking questions over again because none of it seemed real and I couldn’t remember anything that happened.
The night before I had gone to hear Nick Vujicic speak with Rousseaux and my dear friend Aaron. Hearing him speak, I feel like woke up my crying soul. I never thought I’d be sick for this long, just never. I thought my life was “normal” once I got pregnant and my seizures went away, ignoring the fact I still had blood disease and heart disease. Nick made me feel like I actually have a purpose in life. That yes, I may be sick, I may get more sick, but I. HAVE. A. PURPOSE.
He’s a man with no arms or legs and is changing and impacting the lives of millions. His humor made me appreciate him even more! To be able to joke about the hardest parts in your life while encouraging other people with hardships was beyond inspiring to me. He’s able to use his disabilities to to touch hearts and minds in ways no one ever could.
I cried the whole time he was speaking. Thank you Nick, for being such a light in this world. You are an amazing example to me!
It was hours after my grand mal and the ambulance had taken me to the ER that I’m laying in bed, barely able to speak. I couldn’t even walk because of everything my body went through during the seizure. I had to have two people for the rest of the night lift me up on to the toilet. I had so many people coming in and staring, so many people trying to talk to me and me just not able to because of what my brain had physically just gone through. And as I laid in the hospital bed in between sobbing and in between asking my parents what had happened over and over again, I thought of Nick.
I’m crying even thinking about it. Yes I was in pain. Yes I was so confused (still am so confused). Yes I was physically hurting. But the words “my physical ailment truly does have a purpose”, was in the back of my head. What I’m going through now, could bring healing and light to others souls. I could be there for others who no one would be able to understand. Maybe someday I’ll get up on stage and talk about all these bizarre things I’m going through, along with my twisted humor, just to be able to make someone feel the way he made me feel.
It’s been 3 years since my last grand mal. They don’t know what caused this one. No change in any medicine, no change anywhere. Why did I have one this big after my major surgery? So many questions in my life I’ll probably never know, but I have to trust that the Good Lord has a plan. I have to or there’s no point in this life.
Tomorrow I begin all of my testing for my brain. I’ll be strapped to a hospital bed with so many wires connected to my head. Please pray for my patience, answers, wisdom and understanding for Drs., patience and love for Rous and I (we’ll be in a room for over 5 days 😂), and for my fear of the future to be gone. Yes, a much bigger brain surgery is in the works. I’m scared of what could happen after that one, scared it won’t heal my seizures, scared I’ll have worse memory loss, afraid I’ll become more blind, worse at the ability to think of words when I’m verbally communicating and so much more. But I can’t let that consume my being. Everything is planned and ordained by the Lord. There is a purpose for it all.
I feel my small heavy heart starting to have a little bit of hope.
Thank you to all the people that were there for me for this big bizarre seizure. My sweet ambulance girl (who said she followed me on Instagram?! Say hi!!!!), the cutest sweetest nurse in ER, oh my goodness she was such and amazing human! Dr Suarez, for truly being there, truly caring, calling Rous to try and help find him (he was camping out in the middle of nowhere :/) and he prayed over me, what an amazing man. My parents said my brother prayed over me at home after my seizure and was so loving to me which means the world to me! My sweet Father in law Réal and Mom Cheri for driving all over the mountains to find Rous and showing me so much love and care, my dear sweet Mikaela who lives right next door to me, having a friend who truly cares and gets me means the absolute world to me. Of course my sweet Rous for being found and coming to the hospital late into the night. And most of all my Mom and Dad. They were there with me through this all. So beyond loving and caring. I couldn’t talk or really move but they helped with everything. Always comforting me with their loving touches, figuring everything out with Drs and nurses. Thank you for being there, I don’t know what I’d do without you two!
And thank you SO much to those who have given to help me along with journey! I’m hoping to get all my cards written out, but if not just know I love and appreciate you so much. You’re helping me be able to live a better life ❤️

Mornin’ Smoothie

Hello dear friends,

I hope all is well in your homes and hearts, I’m happy to say it is over here! I had to share with you all my smoothie I make every morning. This past year has been such an eye opening one of how important it is to eat healthy, and I’m such a strong encourager to others to join in, especially those battling a sickness of any kind. It can truly change how you feel and think if you just feed your body real and true nutrients!

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So what are the benefits of all these yummy foods?

Read More

Real Talk

Most of you who have been following on here have noticed a change. It isn’t just about my health, in fact most of it isn’t even talking about my health struggles. I’d love to keep you updated and let you know what’s really going on, please watch this video I made 🙂

 

 

So since I have been working with brands that’s why you’ll see so many pictures on here. I’ve been reaching out to many, and have been contacted by lots. Hoping to make a small income off of working with them. Pass the word around if you feel up to it!

This cozy sweater is from Closet Revival! Loved going to the beach and enjoying it’s warmth 🙂

 

 

Get 20% off with code: shophannah Go check out Closet Revival!

The link to my fundraising page is here ♥♥

And please share!

 

Free People Love

 

Lavender, braids, bees, and flowy Free People ♥

 

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I remember going on this shoot with Dawn, it was the first time we’d met, but we clicked and I adore her. She was so full of joy and made me feel so comfortable and lovely. We were in a little lavender field full of 100s of bumble bees. It was such a pleasant little time and I’m so glad these moments happen.
If you already don’t know Free People is in my top 3 favorite clothing lines. So much bohemian goodness in everything!
What is your favorite Boho brand? ♥

 

P.S. Go find Dawn on Instagram!

Inspired by Darling

Hello my wonderful friends!

This new season of my life has been pretty crazy, and dare I say wonderful?! I’ve been so blessed by all the love and support I’ve had. I’ve been so truly blessed to have a life that’s waaaaay more normal than the one I was living. Seizure free, has abled me to start living the life I’ve always dreamed of.

I’m able to have my first job at my most favorite store, Terra Firma Home. Every time I’m there I’m so full of joy. I’ve never have been able to be around people, and meet so so many new people. The only time I was around new (ish) people, was church, and Doctors/hospital visits. So this has brought me so much joy to meet new people, and talk with them.

Rous, and I have been talking about all the plans for the future that we’re now able to do. It’s so crazy. We didn’t realize how held back we were, until I was free of this. The other night at 8 PM we spontaneously drove to the coast, went to bed in our Subaru in the back, woke up at 5 to watch the sunrise.. Of course it was too cloudy and foggy so we explored the ocean. Had such good quality time. We’ve never been able to do things like that because I was too sick. Did this make me extra tired? Yes, but my seizures didn’t double up because of the lack of sleep. Now we can’t wait to see what the future hold for us!

I’ve alway have had a desire to truly be a light to this world. I’ve learned so much from all of this, and want to inspire girls, and others who are suffering. Since having more energy and the ability to do more things, this desire has really increased. I’ve been reaching out to so many people to encourage and help, with just life, and I’m so grateful for it.

I want to share my story with so many, but have never really been able to grasp how. A little over a year ago this article I wrote at Darling Magazine, was chosen to be featured. It’s been so encouraging to me to remember that that happened. I love Darling, and the message they portray of natural, and healthy beauty. I hope to get more involved with them and other businesses like that. If you have any advice please contact me ♥

I have so many dreams for life, and I slowly feel like things are coming forth. I know so many of us have dreams and desires, and we just think that they will never happen so we don’t take a leap of faith. Well, I’m telling you, as a girl who suffered so badly from seizures. And was unable to do so much with my life. Is now taking my leap into new beginnings, you should too! I still have two diseases, but I really want to experience life, so I’m not letting those drag me down.

I hope and pray that you take your leap of faith. If you want to talk more please contact me. ♥

Click HERE to read the Darling post.

2 Month Celebration

It was 9 years of having multiple seizures a day, 2 years of having over 20 a day. They would wear me out so badly. I couldn’t talk when I was having one, I couldn’t tell whoever I was with that I was. I couldn’t even think of the word seizure after I was done having one. I was so beyond fatigued after one, my whole body just felt so sick. I could barely talk for quite awhile after. I couldn’t eat after. I didn’t even remember what life was like to not have multiple seizures a day.

Today is the 2 month celebration of not one seizure since my surgery. I’m crying out of joy as I write this. I had no clue what it was like to live a seizure free life. Wow, it is so beyond different. I honestly feel like a new person! My heart and head feel so much kinder towards…life! I have a joy that I don’t ever remember having. My desires to do so many things are slowly becoming realities and I just feel so blessed, so thankful, so happy.

The first month or  I regretted it badly. Even though I wasn’t having seizures it made me  beyond sick. And I was  out of it, and so scared that that’s what my life would be like. They didn’t warn me about any side effects, but boy did I have them! Now all that I really have is the blindness on the right side of both my eyes, which I’m slowly getting used to. And the ability to not think of words as I’m talking, ha which I’m not used to at all. I’ve lost so so much memory, but really I’m completely ok with that. I can’t remember names, or a lot of memories. But I’ve learned to write things down quickly!

I’ve desired for such a long time to be able to bless people in a big way. And although you might not think this is big, it sure makes people happy. I no longer charge for my photography. I want to be able to give people full sessions and edits with no cost! I’ve already started and it’s just made me so happy! I’m doing a wedding next month! My desire is to really be set up with a nicer camera and lens so I can bless people in a bigger way. This Saturday I’m having a little shop in my backyard of beautiful clothes and house decorations, to try and raise money for this project I’m working on. Ugh I’m just so excited!

Early June, Rous and I head off to the Mayo Clinic for a couple days for lots of testing and Drs appointments. I’m very curious of what a machine will actually catch in my brain. Is all the seizure activity really gone? There’s been moments where I feel like I might have one, but I don’t. I wonder if that’s actual seizure activity or just my body so dang used to it that I feel that. We shall see!

I have 1 sickness down, and two to go! One of the cures for POTS (heart disease) is working out. I haven’t been able to because of how sick I was. But for the past 3 weeks I’ve been working out pretty hard, so desperate for my heart to function normal, so I feel normal. It’s been just all around amazing for my health and mind ♥

Thank you to all the people who gave us food for a whole month after the surgery, wow was that needed and such a blessing. I don’t really remember most, but just know that I’m thankful. Thank you to the 100s of people praying for me, for all the kind words, sweet notes, loving hugs. So much love to you all ♥

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Photo by my dear friend Rachel Haylie. Go check her out at Rachelhaylie.com