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”. ❤️

Advertisements

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.

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

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 ❤️❤️

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!

 

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.

Seizure Free!

The sad thing is I feel like most of my posts are full of bad news. Bad health updates, how depressed I am, just how hard life is (if not I have severe memory loss haha).

This one, however, will not be like that. The 10th of this month was my 3 month anniversary of being seizure free. Just writing that makes me cry. I truly had no idea what a life was like without so many seizures a day. And the crazy thing is when they were testing me, even when I wasn’t feeling my seizures, there was still soooooo much seizure activity going on. So I always felt so sick for a good reason, so much activity going on there!

Well, Rous and I got back from our trip to the mayo a couple days ago. I’ve had so many people asking how it went, and I’m so bad at explaining things using my mouth now. Part of my brain that they burned off was the ability to think of words, thankfully I’m on a computer now and can take my sweet time, but when I talk to people it is such a struggle for me. So here is the little update….

Every MRI, ct scan, EEG (that’s basically all brain testing) that they did on me, came back completely seizure free. Zero seizure activity! My Drs. were even impressed by that. They thought I’d still be having at least one a week, but nope none. My sweet Neurologist says in about 3 months she will start weening me off my high dose of meds. At first I was a little bummed that it wouldn’t be right away, but I think I can wait 3 more months. She just wants to be extra careful with me and I’m so beyond grateful for the care i’ve received from her. They want me to see a speech therapist so I’ll hopefully be able to relearn how to communicate.

The hard thing is my blindness is still strongly there. Hasn’t exactly improved. Both eyes are now 25 percent blind. I’m slowly getting used to it, but still hoping that it comes back. My short term memory is significantly worse. They told me it would be, but wow they really burned off almost all of it. I feel so bad because I can’t remember anyone. Who they are, what their name is, memories of us. It’s crazy. The funny thing is I have had so many people say, “Hey my memory is just as bad and I didn’t have surgery.” I’m laughing now just writing this because no, no it’s not. Ha people don’t know what it’s like to have that burned off. I know so many people say things like that to try and relate, but it’s just hard to hear so much. I almost didn’t write this, but I thankfully can’t remember anyone who said it, I just know it’s been said to me so much. So I guess that’s a plus with memory loss :)Tee hee. And don’t be upset if you did say it!

This trip to the Mayo was seriously such a huge blessing to both Rous and myself. It was honestly just full of joy and real blessing from the Lord. I got to see a very dear friend, her name is Hope. Of course it is 🙂 I met her last time I was there and we got to talk about brain problems. That woman has suffered so much. She has had soooo many surgeries on her brain. And she even has my heart disease, POTS. I just am so blessed to know someone who truly understands what it likes to suffer in my way. People who have hard health issues definitely get this! This is Hope, and I’m asking you right now to just lift this amazing woman up in prayer. Pray for strength, peace, joy and healing. Prayer is so powerful! ♥IMG_5418

One of the days Rousseaux and I went into Starbucks and sat down at a table. I of course wanted to be in the sun so I had us move to a long table. There was a man sitting at the far end of it working on his laptop. We were there a couple minutes and the man says to me that I should get out of the sun. I told him how much I love being in the sun. A few minutes later we start opening up to each other…Why we were in Arizona, what I just went through. He turns his computer to us and what do you know he was in the process of studying? Focal seizures! My ex seizures! We were all so blown away by it. He is on his last steps of becoming a neurologist! We moved down by him and just started talking about life. It was his birthday, and he’s so far away from his family. He felt so blessed by us. And we thought it was so special to meet him. One of the sweetest most genuine, Jesus loving men we’ve met. We knew that was the Lord. We had breakfast with him the next morning and he drove us around showing us neat things there.His name is Giorgio. Which was even funnier to us because Rousseaux and I have a nickname for each other called Georgieaux, pronounced the same.

IMG_1663

IMG_1655

The rest of the trip was talks of the future. What will life be like now without this? Do I have my blood disease? Yes. But I have had no serious bleeding in months! Do I have my heart disease? Yes. But I’m slowly trying to get used to it by ignoring and not fearing the symptoms that I get. We want to travel. I want to go to Australia! I first knew I was in love with Rous when he was living there and I was here, it’s so special to us. I have my first job that I love so much. I wanted to stop after my first day because I had never done so much or anything like that. My amazing boss said that I could, I could go home and get back on the couch all day. Or I could step out and try this. Wow, that blew my mind and encouraged me to keep going, and i’m so thankful that I have.

IMG_1545

IMG_1521

IMG_1580

IMG_1623

IMG_1604

Here is my beautiful Neurologist!

IMG_1679.jpg

A little post I did after seeing my surgeon:

Today I got to see my amazing surgeon, of course I started crying when I saw him. The Lord used him to totally take away my seizures! He said he was so so happy for me, and how sad he was of how sick and depressed I got after surgery. He kept reiterating how excited he was for my recovery and how different my life is going to be, starting at 25 being new. And how thankful he is to be able to do what he does to help me. Thank you sweet Dr. Zimmerman

13407267_10154221878566565_1465810782218516474_n

It’s been on my heart for awhile now, and just recently I really felt called to write a little book about my struggles, battles, hardships, and joy that I’m able to have through it all. Since going through such hard things since a young age, my prayer has always been that the Lord will use me to be a light and example to others who are battling such hardships. Now that I’m starting a new season of my life I feel it is time to start on this book. The crazy thing is I was at work, and my old Pastor Peter-John came in. I was just thinking about contacting him the day before because he wrote a book, and his testimony of what he’s been through touched me so much. I told him that I was thinking about it and he said he didn’t think he was suppose to be in the store to buy something, but to tell me that I absolutely am suppose to write a book! So well, that’s confirmation for me alright! If you have any wisdom, knowledge advice please please contact me.

My friend Amy, has started a fundraiser for me. As most of you know brain surgery, drs appointments, massive amounts of testing and traveling back and forth can be expensive. If you feel led to give even a tiny bit it would bless us so much. We fully know the Lord will provide and that thankfully gives us peace. Click here for the link 🙂

As most of you know I’ve wanted to meet Ellen and give her a hug. Thanking her for all the laughter she’s brought me through so many days of sorrow. I have not heard from her yet, but we made another video to hopefully get in contact with her…

Here is our new video, I can now sing from surgery!!

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?!

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