Hurt and Sorrow

As I woke up this morning it was on my heart, that yes, I do need to be here for others going through suffering, going through hard times of life, going through hardness. Since my surgery happened almost 11 months ago, and I feel in no where near my old self, and not all recovered yet. I have felt so afraid by so many things, so afraid of people. I have been treated in a lot of really sad and messed up ways. Pre surgery I was able to handle being uncared for as a sick person, I could handle being gossiped about, I could handle being uncared for. I could even handle constantly compare themselves to me when they as how I’m doing.

Since this last major brain surgery, I am unable to handle those things. It was a severe traumatic experience. Everything that I just wrote about people have still been treating me in this way, Even when I could barely walk, could barely talk, was blind in both eyes (now just a quarter of both eyes), had a brain swollen for so many months, and I couldn’t do anything right. Yet, I was treated in those same ways. It’s mind blowing for me. People would look to themselves about what they wanted from me, when I physically and mentally couldn’t do anything. Could you imagine the pain and fear that caused me?

When people have opened up from me over the years about their health, from ALL over the world (crazy). I don’t just bring up my pain, I truly care for them and can only imagine what it’s like for them to have to go through that situation. I know what it’s like for them to tell me they feel alone…which is the majority of people I know or random people from social media opening up to me. People that know them aren’t even there for them. They feel so uncared for and unloved. They feel so judged.

To say that I haven’t judged anyone would be highly wrong. I know I have over the years. I know how a lot of it has had to do with me being a sick person and seeing things differently, so quick of me to judge, quick of me to want people to be “right”. Still growing in that, and I think we all will for the rest of our lives.

The extreme judgement after this crazy experience has been so hard on me. So quick to judge that I’m already healed, quick to judge that Rous and I are already thinking of having kids, quick to judge that I’m a b word with relationships, when people don’t even know the relationships. It’s been so hurtful to me and so heavy. So ready to stop this blog, ready to stop my work on Instagram. Ready to stop everything and hide so I’m not judged in the way I’m seen.

Talked to my Mom last night because I was about to have moment of reaching my threshold that really makes me a different person. She had said that even if I wasn’t as open as I am, to be there to those who suffer and to be there for those who want to learn. I would still be judged. Even if I didn’t own a phone and computer I would still be judged. The teaching we listened to today had me crying the whole time. The Lord has given us ALL a purpose and He has specific things for us. Since feeling so judged and hurt I’ve wanted to throw away every social media. But I know, I know that I have a clear purpose for these 16 years of suffering. I’ve learned SO much of how to be there for those suffering and I want so deeply for others to be there for those going through crazy hard times. I can’t just give it all up because I feel hurt and uncared for and judged. No, I just have to turn my cheek and pray to God. Give each post to the glory of God, and hopes that other humans understand how not to be there to others in the midst of suffering.

One of the things that I wish I would’ve felt encouraged by was the business I have on Instagram. I’m able to work with so many brands, meet so many people, and be able to work with areas I’m good at. Photography, editing and social media. I have felt like people thing I’m just a girl so into myself. Which I get where you could go with that. But no, I make money. While I”m at home laying flat literally, the majority of all my days. If as a christian you think I shouldn’t be posting photos of myself to make money while working at home, what do you think? Do you understand how that could hurt coming to someone who’s ill? I have a passion for editing and creating content for business, it’s SO healthy for me to be able to work in a way that I”m good at and love. If you think I’m super into myself and want to feel pretty…ha, you don’t know me. I’ve talked very specifically to the people I respect about this subject. I’ve met and reached to so many people, a lot who aren’t even saved. Who see me on social media as somebody different, but they relate because they have a job with companies like I do. Hopefully this will be my last time even talking about this. If you think I’m all healed and better because I post photos of myself, nope. I do it when able for brands to pay me, and then work on editing when I’m unable to go walk around.

I know many others who “look” normal, and are talked like they are fine and healthy because they look fine. No, we’re not. Just because we look fine, in no way means we feel good and are healthy people. I feel for every single one who’s talked to me about this or who’s reading this and gets it. If you saw me at home when I feel so sick, maybe you would stop assuming and judging. For all the sick people I speak this.

For the extreme few people who I have felt so cared for and loved during this traumatic affection of my life, wow I thank you more than could ever be expressed. To my neurologist who has to email me back constantly saying, I’m STILL recovering from this brain surgery, I thank you. Making me feel like one day I’ll be better, one day it all won’t be this hard. But, that’s up to the Lord. Whether I’m sick on this earth, God’s the one with a purpose or whether I’m healed and feel what life is really like not sick one day, then I would so highly praise God and give it all to Him.  ♥

 

 

 

 

I love taking photos of the ocean. IMG_4845.jpg

Advertisements

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 ❤️❤️

Mother’s Day ❤️

Today is sweet Mother’s Day. I’m so thankful for my mom who’s been so truly good to me for 27 years now. I’m so glad for the other dear moms I have in my life who have shown me so much love and taught me so much. It was a year and two days ago when I lost my sweet baby dancing inside me. I thought my life was going to be so different. I lost the child just a day before Mother’s Day and the pain hurt so bad. I’m confused why that sweet baby isn’t here. I know there must be a true purpose for it. This year has been the hardest one of my 15 years of sickness. Losing the baby inside me and within a year having such intense brain surgery. The Lord has a purpose. My eyes cried as I saw all the Mother’s I saw today. So happy for them and love them so dearly. Just not understanding why I can’t be there. The Lord has a purpose. Today as I was in church I cried for the other moms who feel this. I’m there for you. I never thought I’d understand what going through this is like. I thought I’ll only “get” the hardness of sickness, but now I’m fully understanding how this feels to those Moms who aren’t holding their sweet babies. I love you sweet lady’s. The Lord has a purpose ❤️

My Momma and I ❤️

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 ♥

IMG_4880.JPG

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

Brand New Day

The start of a new day can be one that brings so much sadness and despair, it can bring hoplessness because of the circumstances and pain felt. Today though, isn’t a day like that. I woke up very early, and my whole body just hurt so bad, I felt so beyond tired. And thought, “great, here goes another day like this!”. But as I was sitting on our little couch and the clouds began to fade away and the sun began to shine, I got a restored hope for a good day. It’s good to have a day filled with hope. Today I’m hopeful for a day with energy and joy, a day that i’m able to get stuff done and actually do something with my life. Yay for happy days!

We got home from Arizona on the 28th, which just so happened to be my 25th birthday. It’s so nice to be home and just able to rest, think about everything that happened, talk about the plans for the future and just pray for peace. My birthdays are normally pretty hard for me emotionally, I wish my mind didn’t think this, but it does. Another year of sickness. 13 years..really? 13? Well, this year I will continue praying and believing in healing of my whole body. Brain, blood, and heart.

The trip to Arizona was surprisingly really good. Ok, maybe I shouldn’t say really good. But I was filled with a joy as I was literally locked to the hospital bed. The Drs. all saw it in me and I got to tell them about my hope and faith. I can’t believe how amazing those Drs. were. I saw 5 different doctors and each time they left the room I would cry, not because of sadness, but because of how grateful I am for the true genuine care and concern they had for me. Just the most loving people. I also got to bond with two different nurses. Gosh, they really just know how to make things better. I’m so beyond thankful for good nurses, if you’re a good nurse and you’re reading this, I LOVE YOU!

They were monitoring my brain 24/7 and luckily (?) they sure found what they were looking for. Almost constant activity in my left temporal lobe, which is where my seizures come from. When they took me off my medication, there was constantly abnormal stuff going on there. Even when I wasn’t having one of my seizures things looked wrong in there, which scared them. They all truly believe that removing it is just going to help my seizures so much. 70% chance that they’ll be gone forever! Ugh I can’t even imagine what that’ll be like. I have around 10 seizures every day. If not gone forever maybe 1 a week. Hey that sounds amazing!

Brain surgery for anyone is dangerous, but brain surgery for a girl with no platelets is extra. But they thankfully say it can be done. I will be closely monitored and given my treatment constantly to insure there’s no bleeding. One of the Drs. stayed in our room for about 45 minutes explaining how everything will work. Most of the time I had tears just streaming down my face. I’m so hopeful. But i’m so scared. I’m so scared of the pain i’ll feel, and the complications that could happen. I know, I know, I shouldn’t worry, and don’t one of you tell me that unless you’ve had this done! Thankfully my trust is not in man, but is in God.

We did get to meet the surgeon and of course he was super sweet! He seemed pretty confident in his ability, just a little concerned about the bleeding. He made it sound like a piece of cake to put the laser in there and zap a section of my brain out. Am I concerned i’ll wake up and not know who Rousseaux is? Yes I am. Am I imagining they’ll touch something in my brain that will make me sing like Beyonce? Yes, yes I am. So very many weird and random thoughts happening. I try to just imagine feeling good though.

They called yesterday and said they could schedule it for February 17th, that immediately made me start crying. So soon? I just got home. She understood and said 1st week of March is when it will happen. I’ll be seeing 3 drs before and getting a PET scan done. And then boom i’ll be under for surgery baby!

If I’m up for it I might try and go to Disneyland before, maybe fly up to Seattle to see my Uncle, maybe get a tattoo! I mean I need to do something before I do something this big that’ll put me down for awhile right?! If you have suggestions let me know!

We have absolutely felt so much love and support, and I’m truly just so thankful! The cards, the plants, the food, the clean house (thank you Jenna!). People are always asking what they can do to help and I can never think of anything, but now I have. Things that really help when I’m just unable to do anything are those things. Kind little cards, cute little houseplants,gluten free dinner for Rous and I (trader joes frozen meals are kinda making me sick), and helping with the house! So if you ever want to help when i’m going through a bad phase those are it! Love to you all♥

Oh! One more thing can I just say how amazing it is how many shares and views my Ellen video got? Honestly it’s been keeping me happy thinking that i’ll get to meet her someday. If you want keep sharing my video or even write to her, now that would be just amazing! I wonder if i’ll even know who she is after surgery..a joke! Calm down, my memory will still be there…I hope!

PLEASE SHARE THE VIDEO! 🙂

Wow I’m really craving a donut now, why are there not amazing gluten free donuts?!

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.

HB_013

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

Results

image

I know a lot of people have been wondering what came of the Mayo Clinic. I’ve had a really hard time talking about it and didn’t even want to write about it because I feel so sad. They didn’t help with my blood disease. The Dr said there was nothing they could do but stronger chemos…which wouldn’t heal my body of it. That was pretty disappointing and hard to hear.

All my new symptoms that I’ve had since Kauai, well they figured out it wasn’t anxiety. Ha I knew it wasn’t! Which honestly drives me crazy that I was in the er 5 times in one month and they sent me away every time saying it was just anxiety. Turns out I have a new disease. Yep sadly they didn’t cure my old one. They just found a new one. It’s called POTS. Basically my heart rate goes freakishly high like I’m a man running full speed in the Olympics, not just a 23 year old girl standing. And while that’s happening no blood is getting to my head. So there’s no circulation or blood flow in my brain. Which I’m telling you is debilitating. They did a tilt table test on me which is where you’re strapped down to a table and then put upright and they check your heart rate, blood pressure and I was hooked up to an eeg so they saw how my brain was working during it. After 5 minutes of upright I was so sick but the women we’re so sweet and kept encouraging me to keep going. The longer you’re up the better the results are so I just
stayed. After 15 minutes I was sweating like crazy, couldn’t breath, my legs had the sharpest tingles, I was so nauseous and I just couldn’t do it. Somehow those women convinced me to stay. Right at 25 I said something’s going to happen and the next thing I knew I was laying flat and they were yelling my name. I completely blacked out after 25 minutes.

I’m glad I don’t feel like I’m going crazy anymore. I knew I always felt like I was going to black out and we’ll turns out I can’t stand up for very long because no blood is getting to my head. It’s incredibly hard for me to deal with the fact that I have another disease that came on randomly. I don’t know when I’ll be able to comprehend it. It’s completely changed my life. And I haven’t been this sick, this consistently for this long. My heart is broken. My faith is weak.

I’ve gotten so much “advice”. ” Just be more thankful”. “Don’t give up.” “Have more faith.” “It could be worse” ha honestly I’m kinda going crazy at the words people have said to me. Rousseaux said, “if bad advice were medication you would have overdosed by now.” So true. You can’t quite understand something like this unless you’ve gone through it. I don’t want anyone I know to ever go through this but this is my life. People need to understand how their words can effect someone who’s suffering and can’t do anything about it, greatly. Please be careful with your words, please.

I start on new medication for it today. I’m pretty freaked out. The side effects are pretty rough. I hope it helps. Do I want to be full of medication. No. I’m done with medicine and the side effects and the long term side effects that no one really knows about. But if I can feel like I’m not going to black out, like my heart isn’t racing so fast and I can hear every heart beat so loud in my head that my head has been killing me for months… I will be grateful for Medicine!

So I have ITP and POTS. Once you have one auto immune disease you’re more susceptible to more. I never imagined I’d get more ha but that’s life. I’m doing all the research possible to be rid of these and one day I hope to truly be disease free and live a life where my body feels good! Oh how I dream of that day!

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”

SONY DSC SONY DSC SONY DSC SONY DSC SONY DSC SONY DSC SONY DSC SONY DSC

IMG_7447 IMG_7979

Just In The Hospital

I feel like all my posts have been so depressing lately. I have been extra sad and have had the hardest time holding on to hope. But there is so much for me to be thankful for. Monday I go down to Medford to see my old hematologist and to start getting all my treatments and care down there. She has always been there for me and eager to help whenever. I’m going to be seeing the drs down there instead of the ones up here. It’s crazy how big of a difference the care is here. I just can’t wait to get real help. I’ll get my treatments from my favorite nurses who I love so much and have treated me beyond loving all these years. I actually trust them with touching my body. The majority up here have not done a very good job…. Ugh so bad. Thankfully Rousseaux is right beside me to remind me to be kind 🙂 I can be a little forceful and ungracious when doing the hospital thing.
I’m currently in the hospital getting a treatment. Praying this lasts in my body longer than usual. I haven’t had bruising like this in almost a year. Yikes. People ask how I get my bruises. I normally tell them just from breathing. Which is a joke… For those who don’t know my humor. I’m either crying or making jokes about all of this. I prefer joking.
I’m seeing a GI Dr for the first time at the end of this month. Im really hoping he finds some answers to all my crazy miserable symptoms. The newest neurologist I saw said that something is clearly wrong with me. I was so excited because he actually acknowledged that something was wrong….then he said he’ll see me in two weeks. No tests..nothing. That was kinda when I hit my breaking point with the drs here.
My body longs to be free of this. My heart does too. My hearts never longed for heaven so bad. No more sickness, pain or tears. How amazing is that?
image