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 ❤️❤️

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5 Month Check Up

There is no way I could put into words everything I’ve been through over these months. This surgery was nothing like my Drs thought was going to happen. I still wake up everyday now with all of this rushing through my mind, thinking “did this really just happen?”.

Every single brain surgery is different for people. Not all the same. When my amazing surgeon ended up taking out a lot more than expected, it made this recovery (that’s still happening no matter how much “better” I look) way harder than they thought.

I of course was going to start this by saying “I don’t remember everything I wrote in my last blog”. But I of course know what a lot of you will do bringing up your memory. I guess what I’ll bring up is to help others going through times of suffering. When you ask your friend, family member, church friend, high school person or just a girl you follow on a blog, listen, do not in an instant bring up what you went through, are going through, your grandma went through, you have a friend who could understand, or you know someone on a blog. Listen. Take it in. Do not start quoting bible verses or saying it’s all going to be “better”. Listen. Care for this human.

The things I’ve been going through for 15 years now has taught me a lot. I want to be there for others. Not in ways that cause hurt or stress to those suffering, but be there with care and love. Even as I type this I have 4 people in my mind who had wrote on my last blog that it sucks what I’ve been through and they love me. I look at that and just go “ugh, thank you!”.

Even after this last surgery that had enabled my brain not to work right. Could not talk right (still dealing with that but WAY better), could not see right at all (steal dealing with that and just saw a terrible eye dr about it, ugh pray), has ZERO emotions (it’s in the spot on my brain where all emotions come from), when people would talk they’d have to go slow or reexplain because I couldn’t understand for months, the left side of my jaw was cut before surgery so he would have room and I’m still feeling that heal up everyday when sowed back together. Rous rubbed my head yesterday and touched over on my left side and bam, nice pain feel over there. It still hurts all on my big area. Because I’m still unable to handle things said to me because it was a big traumatic experience my drs explained to me, I’m unable to handle even people saying things to me. I’ve been handling things said to me about health for all these years now so just understand, no I can’t handle this and it’s been 15 years now. Let it be.

I’ve had people bring up their animals having grand mals ( if you ever watch a human or me have them I don’t think you’d say that, people having cancer, people dying, people having brain surgery (every single one is different), people telling me I’m all healed ( mmmmm wait go to a drs app with me then), and people saying “at least I look good”. Oh wow even bringing up that last one makes me breath heavy.

When others are going through hard things, listen and truly care. Otherwise don’t say anything.

I needed to talk to someone so bad months ago. Because I didn’t understand how to keep doing this, how to keep going through my recovery. I told my Dad (who I’m obsessed with) that I need to talk to someone. Someone who has been dealing with sickness longer than me. If it’s been shorter than 15 years I’m not going to talk. If there younger than 40 I’m not going to talk as well. That’s a whole other topic :). I got to talk to sweet Peter John. He gets me. He fully understands what I just went through and have for years. To have meningitis, brain surgery and other intense diseases for 20 years makes me be able to breath and feel comfortable what he would say to me. He gets it. Beyond grateful for that encourager and example of going through sicknesses daily.

What I’m saying is those are the people I would want to talk about their sickness.

I hope this truly makes sense for others. I hope those truly suffering read this because I know how strongly their weak heart (mine) need it.

In Arizona now receiving my first check ups in 5 months. Heavy on me. Much needed though. All testing yesterday was very heavy and hard for me. Makes me want to cry now. Today I get to see my amazing neurologist who I adore and am happy for that. She will help me, calm me and explain what I just went through and how to keep dealing or future things like this. All appointments till Friday. At least I get SO much sun!

Thank you for the 100s of prayers that I know have been going. Thank you for the support I have felt in many different ways.

Again I’ll say to those hurting, I feel you. I get it. Just one day at a time. ❤️

That part of my eye has been blacked out for far too long. Hoping for healing of that! I’m literally completely blacked out there. If you hold your hand there or stand there it’s gone.

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!

 

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

Darling

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A couple months back my dear friend, Dixie (she’s as cute as her name), showed me this magazine that she said she knew I would love the message, the pictures and the spirit behind it all. Darling Magazine. I began reading, and immediately fell in love with them.

They want to inspire women, and they do an amazing job! I’m pretty against most women magazines because they make women think they’re not hot, sexy, skinny, curvy, pretty enough for the world. And it just sickens me. This magazine inspires women to live real and true lives, and I love it. I started reading all their magazines, following them on social media and I can’t get enough of the message they send out. It’s funny, I started #thatsdarling on my instagram and have had quite a few friends make fun of me for it. I just fully support them and want their message to spread! I sent them this piece of my story to let them know just how much I appreciate them:

“”Darling leads women to practice the arts of virtue, wit, modesty, and wisdom- all the while creating beauty and embodying love.”

As I read the words from your magazine my mind and heart are reminded of the life i’ve lived and the lessons i’ve learned.

I’m a 24 year old housewife with a passion for life. The thing is I can’t do everything i have dreamed about. For 12 years I have suffered with a blood disease that has caused me to grow and mature a lot quicker than girls my age. In high school while my friends were concerned about boys and homework, I was in the hospital praying I would be able to go to school the next day, praying that that would be the last treatment. You see, since having it since the age of 12, while most girls are going through stages of wanting to be liked and wanting to be pretty, I was going through a stage of wanting to live! I would have my friends come to me complaining about tests and “fights” at school, and I would leave the conversation crying, just desiring them to see the life I was living. Desiring them to see there’s more to life!

I learned from a young age that it wasn’t about the way I looked or the clothes I wore, but how I can be a light in this world. My desires in high school (and since being out, even more) was truly to have virtue, wit, modesty and wisdom. I learned virtue by observing the amazing older women around me. I learned wit, some would say to a fault, by making light of my hard situation so I could make myself, my drs and my nurses laugh. Modesty, I learned from seeing my dear friends give themselves away, and come to me crying, feeling a loss within them. Wisdom, I learned from all the days spent at the hospital looking out the window wondering what life really is about. My hearts desire became to be an example, a witness and most of all a light.

For the past 3 years now, they’ve been the hardest and best years of my life. I married my best friend from my woodshop class. We started dating 5 years after high school, and married shortly after. My first boyfriend, kiss and love. The best friend i’ve ever had, the most loving, selfless and light in my life. A year and half after marriage I became really ill, and it had nothing to do with my blood disease. I got diagnosed with a heart disease that has debilitated me in so many ways. I’ve had to learn, despite all these hard times, what life really is about.

It’s about knowing there is a purpose for your life, despite your circumstances. I never thought I would have two diseases that hurt so bad, but during these times I’ve been able to share my story with so many others who suffer, and the hope I see in their eyes while I talk to them is so worth the pain I’ve suffered. To encourage others that they too have a purpose, gives me joy.

And all the while I’ve grown a passion for finding real and true beauty in this world. I’ve learned to truly know what it means to embody love. With my husband, strangers from across the world who have read my story, girls from high school who have written to me, and most of all by the One who’s never left my side through it all.

All this to say, thank you, Darling. For reaching out to women all over and sharing the true meaning of beauty!”

Daughter, Be Of Good Cheer

“Now a woman, having a flow of blood for twelve years, who had spent all her livelihood on physicians and could not be healed by any,  came from behind and touched the hem of His garment. And immediately her flow of blood stopped. And Jesus said, “Who touched Me?”
When all denied it, Peter and those with him said, “Master, the multitudes throng and press You, and You say, ‘Who touched Me?’
But Jesus said, “Somebody touched Me, for I perceived power going out from Me.” Now when the woman saw that she was not hidden, she came trembling; and falling down before Him, she declared to Him in the presence of all the people the reason she had touched Him and how she was healed immediately.
And He said to her, “Daughter, be of good cheer; your faith has made you well. Go in peace.””
I got prayed over tonight by some dear men. My husband during his pray brought up this story and when I came back home I reread it. This story has always clung to my heart. For 12 years she had a blood disease. For 12 years I have. I’ve longed to touch the physical hem of Jesus, because I know, I know I would be wiped away of all disease. It gave me a renewed hope. The mighty men who prayed over me gave me a renewed hope. Renewed faith. This story means so much to me and I believe God wanted to remind me of it on this night.
These months have been hard I really feel like I haven’t had a purpose in this life. I got on Facebook and the loveliest of girls sent me this message:
Hannah,
I’m sure I’m not the first to take notice and or the first to say this, but..
Every part of who you are is the depiction of true and whole beauty. You are golden and radiant and it never stops. Like eternal flowers in a field. You are the best example I’ve seen of being the woman God has meant for you specifically to be.
B,
P.S. Also you’re really funny lol
It made me laugh and weep. I’m sure not everyone feels this way but it is my deepest desire to be a light. Thank you sweet friend. We barely know each other, but you have blessed me this night on a whole new level.
I know there are a lot of people who read this who are also sick, and I just want to remind you how important it is to get prayer. It is so powerful and the Holy Spirit does mighty things through it.

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The same sweet girl sent me this song. So thankful. Be blessed, my friends.

Arizona

Update on my Mayo/Arizona trip:
So this has been already quite an interesting experience. The first day and my first appointment was with a hematologist. He was sadly like so many drs I’ve seen who have no desire to really find out why you’re sick. Where my disease is coming from. He threw out some new suggestions of chemos that wouldn’t actually cure me. Just suppress my immune system more. I sat there crying through the whole appointment. I was beyond disappointed by the lack of care this man showed. When we were explaining to him all my new symptoms he had the blankest stare and said, “I can sit here and act sympathetic, but I can’t do anything.” Ok there was no sympathy or care that man was portraying. Jeez it was terrible. It made me feel so hopeless and that the whole trip was pointless. Thankfully we scheduled more appointments and different drs after that.
The next day we saw a neurologist who was incredibly thorough and really tried to get down to the bottom of it. She already did a ton of blood tests and I’m going to be hospitalized Monday to do more testing to find out why I’m having so many seizures, so light headed and dizzy, and constant weird pain in my head. She said there’s a chance that from my brain infection in 2007 I have scarring on my brain and that’s what’s causing all this. If they could figure it out that would be amazing. They would have to do surgery on my brain to remove it, which is dangerous plus my lack of platelets would be even more dangerous so they would have to figure everything out with my platelets first. So thankful to see a Dr willing to help!
Tomorrow I’m seeing an immunologist which I’ve never seen one and am hoping they will be willing and eager to really find out why my immune system is so against me. Find out the real reason behind my disease.
Thankful that Rous and my mom have been able to be here during this. Sadly Rous leaves tomorrow and my heart is pretty broken. He’s done so good at trying to be there for me. Right after my first appointment when I couldn’t stop crying he said, “welp, one appointment down..couple weeks to go!” I thought about it and realized it made absolutely no sense at all and there was no comfort in that ha but I ended up on the floor in the hospital laughing so hard because of it. He really is doing his best. They both are. But it’s hard when you haven’t been in my place ha but they’re both doing so good to be there for me. I’ve had lots of people texting and asking and praying and I can’t tell you how much good that does for me to know people truly care.
Today we went to a butterfly stadium and there was thousands of butterflies…it was beyond incredible. I was in complete awe at the beauty of all of them. It was really on my heart how much the Lord truly loves me. He created all these beautiful butterflies but those aren’t His children. I am. He loves me and cares for me so much more than those unreal looking creatures. I am His. I’m in the palm of His hands. He’s in control of this all.
The lady on the plane next to me told me that the Lord put it on her heart to give me a book about Psalm 91. Which just so happens to be the chapter I’ve been reading and praying for months through all this. She said she’ll be praying for me.
“Because he has set his love upon Me, therefore I will deliver him; I will set him on high, because he has known My name. He shall call upon Me, and I will answer him; I will be with him in trouble; I will deliver him and honor him. With long life I will satisfy him, and show him My salvation”

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October

It’s funny everyone keeps asking me if I’m so excited to go to the Mayo Clinic. And I am. But there’s a huge part of me that feels like it’s going to be just another one of my 100s of appointments I’ve been to where they say I’m unique and have no idea what to do with me. I know that shouldn’t be my mindset but the years of the same thing have taken over. I’m so beyond blessed that I get to go and that my mom and Rousseaux will be there but there’s apart of me that feels nothing.
I think coming up on the 12th year of doing this whole sick thing has really hit me hard. Rousseaux and I will have been married for 2 and a half years and I just don’t want to do this anymore. I want to feel normal. My normal is feeling constantly sick and beyond tired. I’d give anything to not feel that way. Rousseaux and I have had to learn to go through this together. And honestly as amazing as our marriage is it’s really hard to go through something so hard and expect your husband to understand and know how to be there for you. It’s a long learning experience. He loves me so much. Ha it’s just hard.
We’re headed to southern California on the 6th, which is Rousseaux s birthday. And we’re praying that I have energy an am able to get away. Have a real vacation. We both need it so badly. To relax, refresh, laugh with each other. And be away from all the constant hardness of this point in life. Hoping I’ll be feeling good enough for Disneyland. That would be a dream to go there with my husband and be able to have the energy to walk around all day in a magical place!
I hope this didn’t sound too depressing. As I am suffering with it I still have joy in my life and many reasons to be joyful.
Reasons I have to be thankful right now, this point in my life.
1. My husband,best friend, most loving and patient person even though I can be hard to deal with.
2. My parents who have been there with me through it all and have always been so loving and supporting and willing to do anything to help.
3. The crazy amount of people who have been there to support us. Financially and emotionally. So much money raised. And I do believe the Lord will use it for good.
4. My roommates. Although at times it’s hard. I love Xav and Sean so much. It’s good to be around people who make you laugh and know really love you.
5. The fact that I got accepted into the Mayo. Not all people do. There is reason to hope. There is a chance for this to end.
6. My messed up sense of humor. Most people don’t get it. But thankfully it’s extremely entertaining to me and those who do get it I love.
7. My amazing church and family there, Ekklesia. The love and support has been amazing for Rous and I. The teachings and worship have blessed me so much the times I’ve been able to go. So thankful that I really do have a family there.
What are you thankful for despite your circumstances?
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