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.  ♥

 

 

 

 

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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 ❤️❤️

Happy Father’s Day

I’ve been meaning to write one like this for/about my Dad.

I don’t really know how to put into words how truly thankful and blessed I am by this man. He’s my strongest rock. Safest help. My greatest encourage that, “it’s ok”. The person I’ll open up to about things that I do not say. He listens, he cares, he helps me.

There are so many ways for me to talk about him, and I don’t think I can even find the words to.

Going back over the years, there’s been a lot. He’s done so much. I’ve probably caused a couple wrinkles (not that you notice any!). He’s never complained for made me feel worthless. I could start writing about before the age of 12 when I became sick, but I guess this blog is mostly open about my life going through all this.

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I remember when I started my period (shhhhh so embarrassing). I was 12 at elementary school, and it all started. None of us knew my platelets are low or we would’ve contacted a dr with the way it was all happening. Not normal to say the least. But I was at school, and called my Dad telling him I needed him to pick me up as soon as possible. He automatically says, “Did you start your period?”. How did he even know haha? I said yes, and he instantly said he was on his way to pick me up. Making me feel supported and safe. I’ll never forget this moment, mostly because it was embarrassing, but all because of how sweet he was to me. He brought over 15 pairs of pants for me. Which is so beyond funny. Such a man. And I appreciate it so much! He knew I needed something!

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He’s rushed me to the hospital all the many times these years. Bloody mouth, bloody nose, period, fevers, infections, just worried. He is eager and so willing (and I know he wants me there pretty bad too :)) to rush me. Day or night. I remember MANY nights of me waking him up and just needing physical help or needing ER times. I’m so thankful for all his work.

There have been so many times where I’ll start feeling “weird” over these years. I have had way too many “weird” feelings followed by seizures or other random health things. He calms me down every single time. Yes something may be going on, but I do not need to be as freaked out or anxiety worse than mine is. So calming and strong for me to keep going, keep fighting, keep believing. I’m so thankful for his care.

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I remember in high school my Dad and I were down by their pond (no clue what we’re doing down there), but I had had a giant bruise bleeding in my wrist. No, not like all these big bruises people like to show from getting hit. All mine are from spontaneous hemorrhaging from my ITP. Just thinking back to my young self I feel sad. I remember talking to my Dad about it, and he truly calmed me down. He wasn’t going to let me bleed to death. He wasn’t going to let me be scared for my wrist bleeding so heavily inside (I went and got one of my weekly infusions). I got to be able to sleep last night, not scared for my life. I’m so thankful how much he has and will protect me.

There have been nurses, Drs, CNAs, phlebotomists..basically lots like that in this whole healthcare I’ve needed over the years. The majority are AMAZING. But there is quit a few who have been very rude, mean and hurtful to a young girl. high schooler and sick woman needing them. EVERY single time my Dad has been there with me during moments with people like that, he will stand up for me. He will speak truth to these people. He will not act like it’s all ok to treat his daughter like that or let me go through it. This right there makes me breath a deep breath full of thankfulness and honor for him! P.S. If you’re one of my dear friends in hospitals and Drs, you KNOW how much I care and love you. I try and tell you every single time!

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I can’t remember the majority of what happened to me over these past 7 months. Just visions or “shots” of an activity from my intense recovery (that I’m still going through). I remember moments from my Dad being the most helpful person I could ever express. I could barely see. I would just grab his arm and he would help me, always telling me what’s about to come as we walk. I remember about 30 seconds in Arizona of just not understanding how to wear clothes or what to put on my body. I really can’t even explain how little I was able to do things. This is when I was at the start of my inability to talk right, and he came and helped me understand the clothes to put on that day, how to put them on, if I’ll be ok wearing them. He sat with me in Arizona and “watched” movies with me all day everyday. I had no clue what was happening in movies because I couldn’t see right, understand that many words, or words even being spoken. He just sat there to be with me. Yep, another thing that makes me cry.

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Noclue the dates or times of any of these memories, but they’re shot into my head even when the majority is gone. Very crazy to me. Months after Arizona we were watching a movie, no clue what. And I told my Dad I needed to talk with him. I was talking to him about everything I was possibly going through will all this. It’s when the side of my left was still swollen and I had zero feel of emotions. It was terrifying. I felt no emotion you could even think of. After this movie I had felt a glimpse of love. And I was telling my Dad how hard it is because I barely feel anything. I told him I know that I completely love him, but I feel none of it. You have to understand, it’s not an emotion I had to not feel these, it’s my brain being very swollen and having to rewire all of my nerves on that side. Very intense. He just helped me know that I will feel again, even though I couldn’t imagine it then. I knew it would happen. He was there for me, and cared through every thing that my brain was dealing with.

I’m so beyond thankful to have him as my father. He really is the best man, and if you know me, you know I don’t feel the need to just say things 🙂 I love you, Dad. ♥

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My heart breaks for the beautiful friends in my young life who have lost their Dad. I’m not going to write a long thing, for it is not our job to fill it with words. Someone who has not gone through this (me). I don’t ever want to say words of “encouragement” when that’s not needed or hurtful. My heart has felt very loving to my friends, very caring, and very sorrowful. It’s not just one day a year for those who’ve lost. It’s daily. Care for your friends, never make it all better. Much love to you all ♥

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!

 

 

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Hope in the Midst of Suffering 

As we are flying above the clouds right now, on our way to the Mayo Clinic. My mind is racing with so many thoughts. I feel like I’ve never felt this confused in my life. I don’t have a “normal” life. I have one full of so many bizarre, scary moments. In tears thinking of what just happened.
Two days ago I had a massive Grand Mal. I had driven up to my parents alone and it happened there. It feels like a dream I had. I just remember waking up on a different couch with 3 fireman over me asking me who the president was. My parents said it took 30 minutes after my seizure for me to actually come to and communicate. It took hours upon hours for my body to recover. I kept asking questions over again because none of it seemed real and I couldn’t remember anything that happened.
The night before I had gone to hear Nick Vujicic speak with Rousseaux and my dear friend Aaron. Hearing him speak, I feel like woke up my crying soul. I never thought I’d be sick for this long, just never. I thought my life was “normal” once I got pregnant and my seizures went away, ignoring the fact I still had blood disease and heart disease. Nick made me feel like I actually have a purpose in life. That yes, I may be sick, I may get more sick, but I. HAVE. A. PURPOSE.
He’s a man with no arms or legs and is changing and impacting the lives of millions. His humor made me appreciate him even more! To be able to joke about the hardest parts in your life while encouraging other people with hardships was beyond inspiring to me. He’s able to use his disabilities to to touch hearts and minds in ways no one ever could.
I cried the whole time he was speaking. Thank you Nick, for being such a light in this world. You are an amazing example to me!
It was hours after my grand mal and the ambulance had taken me to the ER that I’m laying in bed, barely able to speak. I couldn’t even walk because of everything my body went through during the seizure. I had to have two people for the rest of the night lift me up on to the toilet. I had so many people coming in and staring, so many people trying to talk to me and me just not able to because of what my brain had physically just gone through. And as I laid in the hospital bed in between sobbing and in between asking my parents what had happened over and over again, I thought of Nick.
I’m crying even thinking about it. Yes I was in pain. Yes I was so confused (still am so confused). Yes I was physically hurting. But the words “my physical ailment truly does have a purpose”, was in the back of my head. What I’m going through now, could bring healing and light to others souls. I could be there for others who no one would be able to understand. Maybe someday I’ll get up on stage and talk about all these bizarre things I’m going through, along with my twisted humor, just to be able to make someone feel the way he made me feel.
It’s been 3 years since my last grand mal. They don’t know what caused this one. No change in any medicine, no change anywhere. Why did I have one this big after my major surgery? So many questions in my life I’ll probably never know, but I have to trust that the Good Lord has a plan. I have to or there’s no point in this life.
Tomorrow I begin all of my testing for my brain. I’ll be strapped to a hospital bed with so many wires connected to my head. Please pray for my patience, answers, wisdom and understanding for Drs., patience and love for Rous and I (we’ll be in a room for over 5 days 😂), and for my fear of the future to be gone. Yes, a much bigger brain surgery is in the works. I’m scared of what could happen after that one, scared it won’t heal my seizures, scared I’ll have worse memory loss, afraid I’ll become more blind, worse at the ability to think of words when I’m verbally communicating and so much more. But I can’t let that consume my being. Everything is planned and ordained by the Lord. There is a purpose for it all.
I feel my small heavy heart starting to have a little bit of hope.
Thank you to all the people that were there for me for this big bizarre seizure. My sweet ambulance girl (who said she followed me on Instagram?! Say hi!!!!), the cutest sweetest nurse in ER, oh my goodness she was such and amazing human! Dr Suarez, for truly being there, truly caring, calling Rous to try and help find him (he was camping out in the middle of nowhere :/) and he prayed over me, what an amazing man. My parents said my brother prayed over me at home after my seizure and was so loving to me which means the world to me! My sweet Father in law Réal and Mom Cheri for driving all over the mountains to find Rous and showing me so much love and care, my dear sweet Mikaela who lives right next door to me, having a friend who truly cares and gets me means the absolute world to me. Of course my sweet Rous for being found and coming to the hospital late into the night. And most of all my Mom and Dad. They were there with me through this all. So beyond loving and caring. I couldn’t talk or really move but they helped with everything. Always comforting me with their loving touches, figuring everything out with Drs and nurses. Thank you for being there, I don’t know what I’d do without you two!
And thank you SO much to those who have given to help me along with journey! I’m hoping to get all my cards written out, but if not just know I love and appreciate you so much. You’re helping me be able to live a better life ❤️

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!!

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?!