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.

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Life and Health ❤️

As I sit down to write this I feel like I have no words. It’s been months of actual opening up about my life to people. I’ve had so many ask how I’m doing, how’s my health, how’s everything. From the outside I look “great”. On the inside it’s not so good.

I had a year of life like one I can’t remember. Jobs, life, really feeling alive and being able to do things.

 

I never really had a desire to get pregnant and have a child. Most of my days were full of severe fatigue and seizures. And with the high risk I am from my blood disease, it was never a great desire. Soon after my brain surgery last year, when I recovered and was living a life with no more seizures, I started wanting a little family. We decided we’d try after our amazing trip to Australia.

Within a few months of being home we were already starting a little family. I was due late December. We were so beyond excited! I finally felt like a “normal” woman with a “normal” life. I thought, “I’m not going to be just this sick girl anymore.”. We began planning our little adventure of a new life together!

Having a baby growing inside me, seeing the ultra sound, seeing the heartbeat is something I never thought I’d feel. There was REAL life growing inside me, and I was carrying the child! I’m sitting in a coffee shop as I write this, and am just crying. What an amazing experience that was.

It truly made me look at my life in a whole new way. Who was I going to be as a mother?! I began reading and really growing in my walk with the Lord. I wanted to be the greatest example this baby had of love.

I began reading a book and it changed my whole thought process on life. I won’t go into details because that would be so crazy long. It opened my eyes to how I viewed myself and others. I was so quick to judge and be harsh to others. So quick to see the negative in others. So desperate for others to want to be “better” people. And that really made me such a negative person. Ever since I was 12 I’ve been sick. I’ve seen the world differently than kids my age. While my friends were worried about grades, boys, and how they looked I was worried about bleeding too much, my treatments in the hospital, what my blood count would be. I began to judge everyone and become such a hard hearted person.

I thought if I can’t get my body to be healthy, then I will try and be the “best” person I can be. It wasn’t a mindset based off of love or kindness at all. I felt so unloved by so many people because I felt like no one was there for me, but no one ever really understood because they’ve never been through it. I felt so unloved by God because he allowed me to get sick and more sick over the years.  I viewed my self as this worthless and pathetic person, and I tried to be a better person so I would feel worth something.

It is such a heartbreaking mindset that I had and I’m so glad my eyes were opened to it. I do know that I’m loved by others, and I know Jesus is so dearly in love with me. I feel so sad it took me so long to realize this. I feel so heartbroken how judgmental and harsh I’ve been towards others over the years, just hoping they’d see their little problems as not so big of things.

The Lord used this time of being pregnant to open my eyes to it all.

During my pregnancy I felt a seizure. I hadn’t had one in over a year. I was confused and baffled that I had one. I used to have over 20 a day, and then just none for over a year. Suddenly they were back, and my life was about to take another turn.

I had a good healthy year. It was a glimpse into a lifestyle that I appreciated SO much! I had a year of zero seizures and thinking I’m not this sick girl anymore. I’m about to be a “healthy” mom!

When we went in for a check up and there was no heart beat, I felt so alone and so confused. Why? Why is this being allowed? Am I not worth it? Why do other girls my age get children and I don’t? Why am I the sick girl? Why are my seizures back?

These questions still flash through my mind and I just have to give them to the Lord, otherwise they’ll eat at my mind.

I thought my identity was a sick girl. My whole identity. My whole life. That’s not it though. I’m a dearly loved woman. Loved by God, loved by family, loved by my husband. If you’re reading this and you’re identity is in your biggest struggle, I greatly hope you’ll be able to break free! I feel like a new person now!

I’m so thankful the Lord allowed me to feel like that with this next new journey starting up… a second brain surgery is in the works. Since my seizures are coming back strong, and I’m back on the highest dose of medicine, my drs are hopeful that open brain surgery will be able to remove every part of the scar that is causing seizures. Before they did laparoscopic (laser surgery) because of the danger I have with internal bleeding. My platelets having for the most part been staying around 50,000 though so it would be more safe for them to open up my skull and remove the scar.

The last surgery left me with blindness on the right side of both eyes, short term memory loss, the inability to think of words (my brain has rewired a tad bit to get better at it), and my balance is completely off. When my Dr and I started talking about a more intense surgery to remove the little bit of scarring left,  I was incredibly concerned that I would get more permanent damage or worse than before! They never told me I was even in danger of those. She said since my skull will be open and the surgeon will be able to see the exact spot I’m not in danger of things like this again. Oh how I pray that is true!

They told me last surgery that it’d be a week of recovery… I was so so sick for months. My brain was so swollen, and the parts that were swollen were the ones that trigger depression, and fear. But it was something that couldn’t be controlled because those parts of my brain were swollen.

I’ve been struggling with such fear and anxiety over this next surgery. How I hope it’s not has bad…even though it’s way more intense. Trying to trust the Lord. I ask for prayer if you’re reading this. My life has had so many turns that I just don’t understand, but there is a purpose for it all. I have to daily remind myself that.

Next month Rousseaux and I head to the Mayo Clinic and begin testing for the next surgery. I will be strapped to a hospital bed for 4 days hooked to all these wires on my brain. Making sure they find the exact pinpoint of these seizures. Pray they find it without struggle please! Pray for my sanity. It’s so hard being strapped to a bed. Crying thinking of it now.

Last surgery we had spent a little over $20,000 on hospital bills (not all care is covered by insurance :/ ), traveling, housing, food and care. We were SO incredibly blessed by the generosity of those we love and some we don’t even know donating to us.

My heart has felt very weak this round about opening up and asking for help, but we are in need. I feel partially guilty because last surgery changed my life for a year, and now they’re back. I feel scared people think it was a waste of their money, which I know is a lie. Oh how my mind is full of lies with this whole health thing. We kindly ask if it’s put on your heart this time around. We’re so beyond grateful for all the love, care and generosity we’ve been given over these years with my health and our family.

People always ask how they can pray for me with all this and I will gladly ask for prayer. Peace through it all, trust in the process, wisdom from my drs, the testing to give answers, provision for all the needs, healing for my seizures ♥♥♥

If you have any questions about it all please feel free to write to me!

 

Here is a link for donations if you feel led ♥

Donate Here

Mornin’ Smoothie

Hello dear friends,

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

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So what are the benefits of all these yummy foods?

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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.

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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.

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Here is my beautiful Neurologist!

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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

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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 ♥

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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. ♥

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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?!

Thanksgiving

The past week as been pretty hard down time. My seizures have kinda been out of control, I’ve just had to lay in bed flat and have Rous call and check up on me just to make sure nothings happened. These days are on the scarier side, the days that make me feel kinda helpless and hopeless. But it popped up on my Facebook that a year ago I was feeling this same way. All the encouraging words that poured forth from people on that blog post boosted my spirits in a way I did not think would have been possible today ♥

Yesterday I had a Drs. appointment with a new Neurologist here in Medford. Now if I could sum up my times with male neurologist it would just be a pool full of tears. I don’t know what it is, but wow they have been seriously uncaring and rough. My hematologist here wants me to just have one before I leave for the Mayo Clinic so they’ll be able to communicate with someone here, and if I need other testing here when I get back. So I of course agreed. Did I have anxiety before I met this man? Yes, yes I did. I was telling Tina (my amazing mother in law) about all my times and she was just really hoping for the best. She thankfully took me because I haven’t been able to drive. So when he walked in the room and had Rousseaux’s hair I knew he was going to be different. I start telling him about my health and he just starts cracking up and says there’s nothing he can do about it. Ha which it wasn’t a mocking laugh, it was i’m too messed up. He said he wants to be able to help in anyway possible. Which he of course said I have a very unusual case and need serious testing, thankfully the Mayo will be doing. The whole appointment was full of genuine concern for me and laughing. I was so beyond blown away by it, serious prayers answered! So now I have a man I trust about my brain just right down the road, wow.

I just had to write down a couple of the things i’m just so thankful for right now:

*Tina, who’s been able to take me to so many appointments and just be truly encouraging through it all. Thank you for driving me to all my appointments and errands!!!

*My nurses, who I hadn’t seen in awhile. I went to drop off a Christmas card for them and just their genuine love and concern for me has always blessed me so much. I walked out of the room and down the elevator just crying out of how much those women have blessed me.

*This adorable house that the Lord has blessed us with and the huge backyard. I’m so excited once i’m feeling up to it to just begin working and creating an amazing garden.

* Rousseaux, the best friend I’ll ever have. Who makes me laugh when i’m feeling super jacked up and is always so beyond loving to me. I’m so excited for him to be able to leave for a couple weeks and be with me during Mayo.

*Boylan’s and Brasseurs, love all my family so much♥

*My cutest dog who lays with me all day.

*This awesome church that I get to be apart of and am so blessed when able to go.

*Living down in Southern Oregon, ugh it’s just so pretty

*All the help we’ve had with this new project of a house.

*Mike and Sally Brown, all the wisdom they’ve given us..sheesh

*Always knowing Deb Larson is praying for me, I love that woman so much and can say I’m happy about Eugene because of her.

*The 100s of people I know that are praying for me, who knows where I’d be!

*Having hope in a better tomorrow

*Seriously good meat omelettes. Wow I think that might be my favorite meal.

*All of our dear friends in Eugene, who we talk about daily.

*Essential oils

*Wow, now i’m seriously just craving an omelet.

*Going on adventure photoshoots.

*The Suanders moving to our house. Knowing they’ll be people close, cutest kids, sweetest wife, and ridiculously funny(?) husband.

*All the lives I’ve seen changed for the better because of their new found hope.

*The amazing staff at Hematology/Oncology

*All the hilarious “advice” people give us.

*New friendships

*All the encouraging older women in my life.

I still just need an omelet. ♥

Love is patient, love is kind.

well, it’s definitely been awhile since i’ve been on here. recently i’ve had quite a few people come up to me saying they want me to update on my blog and one person saying how much of a blessing it was to them, which in return really made me happy!

The past couple months lots has changed. Rousseaux and i were very blessed to be able to move back down to southern oregon. it’s so weird, neither of us thought we’d really ever like to move back, but boy are we so happy we did. he’s now working at an amazing church that we’re both so thankful for and part time at a coffee shop. he’s doing so beyond much to provide for us and i’m so beyond grateful for that man!

i am now back to seeing my Dr. of who i had for 7 years. i can’t even describe how much of a relief it is to be under the care of this woman. to know how much she loves me and is there for me. so much of my anxiety is gone just because of her. that whole drs office i love so much. my first day back i cried quite a few times seeing so many faces who make my visits good! i am so thankful for each one of them. since being back i have not had a treatment, because there’s been (basically) no active bleeding. the lowest my platelet count got was 3,000 and wow was i bruising. All my symptoms are back since moving here; bloody noses, big bruises, PETECHIA, blood blisters in mouth and lots of gum bleeding. which is just so weird because my platelets were low in eugene, but i hardly showed it! Oh well, unless there’s serious bleeding i’m not going to get a treatment. but if i do get one i have the best nurses in the world who i love and miss so much! they have been some of the most amazing woman in my life over the years and i’m so touched by them!

i’ve been trying to fill up my time, when i’m feeling good, so i’m not home all day. so i started pursuing photography. i’ve absolutely loved it for years, but never really thought about making it a little business, for fun and to help Rous! so i’ve been able to spend hours shooting people and editing. it’s been so fun and i’m so grateful for the OPPORTUNITIES i’ve had. i can’t wait to learn more, experience more and meet more people doing it! Visit geoegiarose.org to see!

my strength and faith over the past year has been very rough. i’ve questioned god so much. i’ve cried and felt so alone, so much. since getting my new heart disease i’ve really struggled with my faith and walk. the passion that once burned inside me seems to have faded…but i can say with a joyous heart that since moving back down here my hope has increased, my joy and delight in the lord is coming back, my desire to bring his love to this world is there and i’m so excited!

my pastor, kenner, taught on what it really means to love as a christian this morning. i was really convicted, but also really excited and inspired. we are to love as christ loved, which is hard, but we’re called to do it. when i’m tired and don’t feel like loving, i’m called to. when someone is rude and hurtful, i’m called to. when they seem absolutely unlovable, i’m called to.. i pray that this next chapter of my life, our life will be one that i do pour out his love. i want jesus to use what i’m going through to bring his love into this wolrd. i don’t want to be sick, but for the time that i am i want to be used!

quick little story, and i’m done! i was sitting at the drs office waiting for my results (i am always the youngest one in there!!) and this older man sits across from me. he just had a sweet presence about him. he didn’t creep me out like most men who smile at me. he saw that they had to draw my blood twice and he said that made him sad, and he realy meant it. he got called into see his dr and i didn’t think i’d see him again. but they had ordered the wrong tests for me and basically it was taking over an hour to do what should have taken 20 minutes. i was trying not to get mad, which can easily happen at the drs, and i told rous next to me that maybe the lord had a purpose for this. welp 40 minutes later the man came walking out of his appointment and was surprised to see me. he said he was so saddened to see someone so young in there and that he will be praying for me every night and that there really is a god. i stood up and said that jesus is the only one  getting me through this. he came over, gave me a hug and started crying. well, we both did. he said he prays every night on his knees and he faithfully will be praying for me. he encouraged me that this is not it. that jesus is coming back and when he does every tear will be wiped away and every sickness healed. i felt so encouraged by that! it was so neat to see how that was ORCHESTRATED!

i don’t know who still reads my blog, but i love you all and am so grateful for the support and love i’ve RECEIVED from you over the years ♥

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Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth.  It always protects, always trusts, always hopes, always perseveres. Love never fails