As I woke up this morning it was on my heart, that yes, I do need to be here for others going through suffering, going through hard times of life, going through hardness. Since my surgery happened almost 11 months ago, and I feel in no where near my old self, and not all recovered yet. I have felt so afraid by so many things, so afraid of people. I have been treated in a lot of really sad and messed up ways. Pre surgery I was able to handle being uncared for as a sick person, I could handle being gossiped about, I could handle being uncared for. I could even handle constantly compare themselves to me when they as how I’m doing.
Since this last major brain surgery, I am unable to handle those things. It was a severe traumatic experience. Everything that I just wrote about people have still been treating me in this way, Even when I could barely walk, could barely talk, was blind in both eyes (now just a quarter of both eyes), had a brain swollen for so many months, and I couldn’t do anything right. Yet, I was treated in those same ways. It’s mind blowing for me. People would look to themselves about what they wanted from me, when I physically and mentally couldn’t do anything. Could you imagine the pain and fear that caused me?
When people have opened up from me over the years about their health, from ALL over the world (crazy). I don’t just bring up my pain, I truly care for them and can only imagine what it’s like for them to have to go through that situation. I know what it’s like for them to tell me they feel alone…which is the majority of people I know or random people from social media opening up to me. People that know them aren’t even there for them. They feel so uncared for and unloved. They feel so judged.
To say that I haven’t judged anyone would be highly wrong. I know I have over the years. I know how a lot of it has had to do with me being a sick person and seeing things differently, so quick of me to judge, quick of me to want people to be “right”. Still growing in that, and I think we all will for the rest of our lives.
The extreme judgement after this crazy experience has been so hard on me. So quick to judge that I’m already healed, quick to judge that Rous and I are already thinking of having kids, quick to judge that I’m a b word with relationships, when people don’t even know the relationships. It’s been so hurtful to me and so heavy. So ready to stop this blog, ready to stop my work on Instagram. Ready to stop everything and hide so I’m not judged in the way I’m seen.
Talked to my Mom last night because I was about to have moment of reaching my threshold that really makes me a different person. She had said that even if I wasn’t as open as I am, to be there to those who suffer and to be there for those who want to learn. I would still be judged. Even if I didn’t own a phone and computer I would still be judged. The teaching we listened to today had me crying the whole time. The Lord has given us ALL a purpose and He has specific things for us. Since feeling so judged and hurt I’ve wanted to throw away every social media. But I know, I know that I have a clear purpose for these 16 years of suffering. I’ve learned SO much of how to be there for those suffering and I want so deeply for others to be there for those going through crazy hard times. I can’t just give it all up because I feel hurt and uncared for and judged. No, I just have to turn my cheek and pray to God. Give each post to the glory of God, and hopes that other humans understand how not to be there to others in the midst of suffering.
One of the things that I wish I would’ve felt encouraged by was the business I have on Instagram. I’m able to work with so many brands, meet so many people, and be able to work with areas I’m good at. Photography, editing and social media. I have felt like people thing I’m just a girl so into myself. Which I get where you could go with that. But no, I make money. While I”m at home laying flat literally, the majority of all my days. If as a christian you think I shouldn’t be posting photos of myself to make money while working at home, what do you think? Do you understand how that could hurt coming to someone who’s ill? I have a passion for editing and creating content for business, it’s SO healthy for me to be able to work in a way that I”m good at and love. If you think I’m super into myself and want to feel pretty…ha, you don’t know me. I’ve talked very specifically to the people I respect about this subject. I’ve met and reached to so many people, a lot who aren’t even saved. Who see me on social media as somebody different, but they relate because they have a job with companies like I do. Hopefully this will be my last time even talking about this. If you think I’m all healed and better because I post photos of myself, nope. I do it when able for brands to pay me, and then work on editing when I’m unable to go walk around.
I know many others who “look” normal, and are talked like they are fine and healthy because they look fine. No, we’re not. Just because we look fine, in no way means we feel good and are healthy people. I feel for every single one who’s talked to me about this or who’s reading this and gets it. If you saw me at home when I feel so sick, maybe you would stop assuming and judging. For all the sick people I speak this.
For the extreme few people who I have felt so cared for and loved during this traumatic affection of my life, wow I thank you more than could ever be expressed. To my neurologist who has to email me back constantly saying, I’m STILL recovering from this brain surgery, I thank you. Making me feel like one day I’ll be better, one day it all won’t be this hard. But, that’s up to the Lord. Whether I’m sick on this earth, God’s the one with a purpose or whether I’m healed and feel what life is really like not sick one day, then I would so highly praise God and give it all to Him. ♥
I love taking photos of the ocean.
New 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 ❤️❤️
Today is sweet Mother’s Day. I’m so thankful for my mom who’s been so truly good to me for 27 years now. I’m so glad for the other dear moms I have in my life who have shown me so much love and taught me so much. It was a year and two days ago when I lost my sweet baby dancing inside me. I thought my life was going to be so different. I lost the child just a day before Mother’s Day and the pain hurt so bad. I’m confused why that sweet baby isn’t here. I know there must be a true purpose for it. This year has been the hardest one of my 15 years of sickness. Losing the baby inside me and within a year having such intense brain surgery. The Lord has a purpose. My eyes cried as I saw all the Mother’s I saw today. So happy for them and love them so dearly. Just not understanding why I can’t be there. The Lord has a purpose. Today as I was in church I cried for the other moms who feel this. I’m there for you. I never thought I’d understand what going through this is like. I thought I’ll only “get” the hardness of sickness, but now I’m fully understanding how this feels to those Moms who aren’t holding their sweet babies. I love you sweet lady’s. The Lord has a purpose ❤️
My Momma and I ❤️
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.
I know a lot of people have been wondering what came of the Mayo Clinic. I’ve had a really hard time talking about it and didn’t even want to write about it because I feel so sad. They didn’t help with my blood disease. The Dr said there was nothing they could do but stronger chemos…which wouldn’t heal my body of it. That was pretty disappointing and hard to hear.
All my new symptoms that I’ve had since Kauai, well they figured out it wasn’t anxiety. Ha I knew it wasn’t! Which honestly drives me crazy that I was in the er 5 times in one month and they sent me away every time saying it was just anxiety. Turns out I have a new disease. Yep sadly they didn’t cure my old one. They just found a new one. It’s called POTS. Basically my heart rate goes freakishly high like I’m a man running full speed in the Olympics, not just a 23 year old girl standing. And while that’s happening no blood is getting to my head. So there’s no circulation or blood flow in my brain. Which I’m telling you is debilitating. They did a tilt table test on me which is where you’re strapped down to a table and then put upright and they check your heart rate, blood pressure and I was hooked up to an eeg so they saw how my brain was working during it. After 5 minutes of upright I was so sick but the women we’re so sweet and kept encouraging me to keep going. The longer you’re up the better the results are so I just
stayed. After 15 minutes I was sweating like crazy, couldn’t breath, my legs had the sharpest tingles, I was so nauseous and I just couldn’t do it. Somehow those women convinced me to stay. Right at 25 I said something’s going to happen and the next thing I knew I was laying flat and they were yelling my name. I completely blacked out after 25 minutes.
I’m glad I don’t feel like I’m going crazy anymore. I knew I always felt like I was going to black out and we’ll turns out I can’t stand up for very long because no blood is getting to my head. It’s incredibly hard for me to deal with the fact that I have another disease that came on randomly. I don’t know when I’ll be able to comprehend it. It’s completely changed my life. And I haven’t been this sick, this consistently for this long. My heart is broken. My faith is weak.
I’ve gotten so much “advice”. ” Just be more thankful”. “Don’t give up.” “Have more faith.” “It could be worse” ha honestly I’m kinda going crazy at the words people have said to me. Rousseaux said, “if bad advice were medication you would have overdosed by now.” So true. You can’t quite understand something like this unless you’ve gone through it. I don’t want anyone I know to ever go through this but this is my life. People need to understand how their words can effect someone who’s suffering and can’t do anything about it, greatly. Please be careful with your words, please.
I start on new medication for it today. I’m pretty freaked out. The side effects are pretty rough. I hope it helps. Do I want to be full of medication. No. I’m done with medicine and the side effects and the long term side effects that no one really knows about. But if I can feel like I’m not going to black out, like my heart isn’t racing so fast and I can hear every heart beat so loud in my head that my head has been killing me for months… I will be grateful for Medicine!
So I have ITP and POTS. Once you have one auto immune disease you’re more susceptible to more. I never imagined I’d get more ha but that’s life. I’m doing all the research possible to be rid of these and one day I hope to truly be disease free and live a life where my body feels good! Oh how I dream of that day!