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

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.

What not to say to a sick person: Part 1

Hello my dear friends, or just random people off the internet, that I’ve met SO many from. This is a huge topic that has been very heavy on me. I’ve talked to SO many others suffering who have to deal with things and feel so alone in this world from what has been effected by them. I want to be there for those suffering so badly. As my recovery still goes I know that one day I’ll be able to be there for others suffering again someday. For now I can just encourage you to not do these things. Which, sadly, the majority of humans do this when they couldn’t even imagine what someone is going through.

Much love. ♥

 

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.

Round Two of Brain Surgery

I feel like everytime I start to write I have tears in my eyes. Such a strange season of life that I feel is so unreal, and my mind does not know how to grasp it.

I’m currently laying on the couch shaking from how weirdly sick I feel, which isn’t a strange thing in case your’e wondering. No clue if it’s from seizure activity or just my body being the weird self it is. Possibly just all the anxiety, fear and confusion I feel kicking in. I didn’t sleep much last night. I kept waking up all night with my mind racing about the upcoming surgery. It’s just so unreal that this is happening. I want to say how strong my faith is and how encouraged I am, how joyful I feel about it, and how I know it’s all for a good purpose. Sadly that’s not where my mind’s been going.

Before you feel the need to write to me “encouraging” me, just wait. I haven’t really been opening up about everything because I can’t keep hearing people try and fix, help, make me laugh, change my view on everything. Unless you’ve been through a journey of sickness like this just please don’t. I can’t tell you how much it wears me down. I know so much people mean good, but it is the hardest thing to just smile and go, “yep, thanks”.

I’ve vented with others who are very sick about this and we feel the same. Don’t compare your blood draw to this upcoming surgery. It just hurts us. Don’t say you get it because you were really sick for a month in the 4th grade, which of course I’m sad you were, but you’re better (praise the Lord!). This is a daily struggle for SO many people. It’s been almost 14 years of seriously hard health issues. I’m at the point of not being able to smile when someone makes a joke about severe bleeding, seizures, brain surgery, memory loss, me not being able to sit up long because I’ll pass out. It’s just not funny, and it’s not a light topic. It’s a very real and very hard battle I’m going through right now.

I know so much that people do not mean to cause any kind of hurt in me, that’s why I thought I’d open up about it. For me and other people you know who are sick. When people just give me a hug and say they’re so sorry for me, they love me, that means so so much to me. I feel genuinely loved. My dear friend Sloane recently dropped off a bag of delicious food and magazines to help me and I cried. That action meant so much more to me then a, “It could be so much worse.”. The cutest Jessica (who just had a baby!) brings me a meal, and she didn’t even know how I was feeling, made me cry. She just wanted to help. And it helps so much! I feel so loved and cared for! As I write this I know there’s other things people have done but my memory is so far gone right now.

Thank you so much to all my friends who have loved and cared for me! This next season of life is going to be a hard one. December 8th is my brain surgery. They’ll cut open 4 inches of my skull and go in to remove the last remaining part of my scar. I cry as I start typing this. My sweet Dr. said this recovery is going to be hard, this is going to be a lot longer than the last surgery. I can’t even imagine that being true. I was in so much pain, so out of it, severely depressed, couldn’t think right for MONTHS after the last one. Will this one really be harder? I pray it won’t.

Next month I was suppose to be having our baby around this time. Instead I’ll be having my skull cut open. How am I suppose to understand that? I guess that’s when having a God that I really believe in is tested strongly. There has to be a purpose for all these things in my life, there has to be. If not, what even is this life.

We’ve been so blessed with money for this trip and surgery, an amazing place to stay, my parents being able to come. I truly am so thankful for so much. If you’re reading this please pray for the heavy weight I feel. I’ve been blessed so much, but all that is in my mind since the date has been set is this intense surgery. I’ll be out with friends acting as though everything’s normal, I never want to bring up my issues, but dang, I’m about to go through a crazy life event that most people have no clue what it’ll even look/feel like.

Take every thought captive, I know I know. But, it is extremely hard. Everyday is different for me. I’m unable to drive so I’m stuck home most days alone, and wow it is tough. You’re unable to drive till 3 months after having a grand mal. I didn’t think it would be this hard, but it makes me feel even more trapped.

I think about all the hair that will be shaved off, the intense amount of pain I’ll feel, the loneliness I’m scared of feeling (like last surgery), the short term memory that will be damaged more…so on and so on. It’s just a lot. Wow, this is the most depressing one I’ve written yet!

Ha the funny thing is I’m not even depressed,  I’m just overwhelmed!

Getting IVIG on the 4th to make sure I have platelets before surgery! 1st long treatment in over a year. I’m just happy I’ll get to see my sweet sweet nurses.  Please pray for the medicine to work and that I’ll have an abundant of platelets before and after surgery  so I’m not at risk of severe bleeding.

I do hope this all made sense and didn’t sound harsh. I just thought I’d really open up about how hard this has been in every area. So much love to all you who have been seriously supporting me! Thank you for the love I’ve felt by so many.

I may do one more post before surgery, but if not I’ll be back in quite a few months. Thankful to be seizure free, hopefully remembering who you are (half joke hee hee).

This Christmas I’ll be very very weak and out of it so Rousseaux and I are going to get a tree early and celebrate here at home. If you have any other fun ideas to make this special please let me know! I do feel partly guilty for making this a “sad” Christmas (and for way more things) so I wanted to do something special here at home with Rous!

Here is the page to donate ♥

I did also want to leave this song. I’ve been listening to this everyday. A dear friend over in Australia sent it to me awhile back and it has just been stuck in my heart. Thank you sweet Kieran! A super powerful song!

 

 

IMG_9761

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!

IMG_8991

IMG_8998IMG_9001IMG_9002IMG_9003IMG_9019

 

So what are the benefits of all these yummy foods?

Read More

Trials 

I’ve been thinking a lot about my little journey through life. It’s been actually crazy. I turned 25 this year and have been through so stinking much. All of it has made me change and grow so much. I’m not the same person I was 10 years ago, 5 years ago, even a year ago. (Just ask Rousseaux)
Struggles, trails, burdens, they really do change you. Hopefully they strengthen you. Hopefully they make your faith strong. Hopefully they open your eyes to all the vanity in this world. Even as a young girl I was changing into a woman with eyes open to this vain world we’re in.
I remember one day when I was getting one of my 8 hour infusions. These two people next to me who were also getting treatments. Asked me how I was smiling. Why was I smiling? We’re in a terrible place going through terrible things. The lady was in her 40s and the man was a bit older. They had so much bitterness about the journey that they were in. I got to tell them about my faith and hope in Christ. I got to tell them that this isn’t the end, this isn’t all our life is about. They were in shock at such a young girl saying that. Now I’m not telling you this out of pride I’m trying to encourage you to learn from the trials that we go through!
My mom sent me a little video of the names of the people who came to visit me 9 years ago (ok I’m already crying again) when I had meningitis and encephalitis. When I was dying. I didn’t remember any of the people on the list besides Rousseaux, Robby and Forrest. But I was SO blown away by all the people who came. So many people I would never expect. It made me feel so loved and cared for.
It’s crazy that 9 years ago I went through that terrible trial, which led me to this past trial of brain surgery. To remove the scar that was left from that time. To start a new life, really, from taking away the burden that that time left on my life.
I was sitting with my dear friend, Amy (her story will be here soon ❤️) the other day. She turned to me and said, “Hannah, isn’t it crazy that you just had brain surgery?”. Gosh it made me feel so good to have someone say that. Everyday I think about it. Everyday I’m blown away that I went through that already. And it’s like it never happened. But to me it did and it was so big. It was life changing. Plus how many 25 year olds, or most people can say that they’ve had that done? Probably not too many.. All the Drs tell me I’m “special”. Ha not a compliment those times.
I hated all of these times. All the physical pain, heartache, depression, anxiety, feeling completely depleted. But I can say now that I’m kinda glad to have gone through this journey. I’ve been able to connect and encourage so many others who’ve battled with their health, and I truly want to be used to be a light to so many with my story!
Am I all better? No. I still have my little blood disease. Still have my heart disease which kinda kicked back in hard and sadly has made me not be able to work at my favorite little store. But I know there is a plan for my life. I know there’s a flexible job out there for me. I know there’s a plan for my life. I hope you know there’s a plan for yours, to bring you peace and not evil. There is a future and a hope ❤️

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!!

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

Hosanna

I’ll start off with a huge thank you to everyone who has been supporting us, and I mean all the food, love, finances, hugs, words, encouragement and mostly prayer to my Savior.

Has I’m writing this, and thinking about how this past month has been I’m already crying. Saying it’s been hard doesn’t seem to fit. It broke me in every way imaginable. My heart is happy to say that things are getting so much better. It’s still “hard”, but way beyond better then even a week ago.

Rous, thankfully got to explain everything with the surgery, and it was beautiful and true. Besides all the pain, that is really gone away for the most part, so so much was and is there that they didn’t even mention. I’m blind in both eyes on the upper left part, which is so hard to get used to. One Dr. said it will always be there, another said it should go away with swelling, but they also said my swelling should already be gone. I’m really hoping that it goes away.

The part of my brain that is swollen effects when you get angry and anxiety. And I’m just so sad to say that those have been severely effected. More so the anxiety. And I’m sure that’s just mixing with my heart disease, but wow, it has been so bad. I just never struggled with it and now it’s all over the place. My heart just feels so broken over everything. It used to be that I had experienced more life without sickness and now it’s changed, since my birthday, to more sickness then a healthy  life. To me that is just beyond crazy!

A couple hours ago I had to get out of the house and clear my mind. So I went for a long long drive in the country with praise music on. Just absolutely sobbing from everything that’s happened since the surgery and everything that’s been happening for these 13 years. My heart just feels so sad about it all. I had worship music on and I just turned it up and asked the Lord to give me a song that I need to really understand right now and to speak to me through it, and Hosanna came on. Hosanna means; an expression of adoration, praise, or joy. Over and over again I was singing (and crying), Hosanna.

Heal my heart and make it clean
Open up my eyes to the things unseen
Show me how to love like you have loved me

Break my heart for what breaks yours
Everything I am for Your kingdom’s cause
As I walk from earth into eternity

This spoke to me in more ways then I could say.

When I was on the drive I got a text from my brother, Bleu, but didn’t want to read it (AND YOU GUYS SHOULDN’T TEXT AND DRIVE, SO DANGEROUS). When I got home I opened it up and this is what it said, “Here’s a fun fact for you: did you know that when your parents conceived you,  that there were 100 million other members all floating around, and you, yes you were chosen by God of all those other 100 million other children to have life? Pretty amazing! Huh? And if you go back and times that by just our grandparent and great grandparents, then that’s 6 different couples so that’s 600 million! And just the chances of them meeting when they did and having kids…That’s a miracle. You were put here, specially designed and given life for a special reason and purpose. Truly He can say you are fearfully and wonderfully made.” Whoa. I don’t know if i had ever felt the Lord speaking to me so much. I needed to hear that more then I could ever explain! There really is a reason for me in this life.

The one thing I’ve been doing to help my anxiety (when i’m up for it) is gardening! It has become my favorite thing to do. I absolutely adore making the outside of our house look beautiful. If anyone has any tips or any plants they’re giving away let me know ♥

I thankfully can say that I have not had one seizure since surgery. They said it would probably take months to years to be like this, and I would still at least have one once a week so I am pretty blown away by this. I was having 5-20 a day! Now once my brain isn’t swollen and I’m not having this anxiety/depression/anger I’ll be able to enjoy it like a normal person would! Hey, I might never be normal, and it’s ok to be different. My greatest desire in this life is to be a light in this world. I truly pray through everything I’ve gone through and am going through that I can. Lord bless you all who have been so supportive and loving to me, truly thank you. ♥

IMG_4394