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Monday, August 22, 2016

New Youtube Channel!

Hi friends! I have so much to share with you! I started a YouTube channel called "Learning to make Limeade out of Lyme" and just posted my first vlog! Thank you to Ashly and Mike Costa (Ashly was on Dancing with the Stars and her husband, Mike, was a producer!) who encouraged me to start a channel! The vlog when they came to our house to give me a dance lesson will be up tonight too!! Please subscribe to my channel to get notified when there is a new vlog so you can see how I overcome Lyme! Love you all so much! 
💚 Watch my vlog to see something exciting I did today!

Monday, May 23, 2016

Dancing With The Stars Coming To Me!

I have some REALLY SUPER EXCITING NEWS!! I'm getting a dance lesson from a Dancing With the Stars pro!
Ashly Costa was a pro dancer on Dancing With The Stars for seasons 1-3 and 10 (correct me if I'm wrong 😊)!
Her husband, Mike Costa, was a producer for Dancing With the Stars too and that's how they met! They now do (almost 😉) daily vlogs on YouTube, and I won a contest on their channel! 
So Ashly and Mike and their sweet kids will be coming to ME here in Oklahoma to give me a dance lesson!!!!! I can do a private lesson or a group one, so I have some big decisions!!! 
I've talked with Ashly a little since finding their YouTube channel and she is so sweet! Their family vlogs are just amazing because of how caring they are and just how they live life to the fullest! I can now say that they're just as sweet in "real life" aka, FaceTime ☺️ 
I'm SO humbled and excited to be given this opportunity!!!!! We don't have date set yet but I will let you all know for sure! 
Please check out their channel and subscribe to be sent notifications when there's a new video! They just reached 5,000 subscribers which is incredible!!! I think I'll be on their next vlog so look for that too! I haven't stopped smiling since we talked! 😊💚 it's amazing how God brings joy exactly when I was kinda down from all the side effects of my treatments and the staph infection. 

Here's their YouTube channel! Please check it out!

Tuesday, May 10, 2016

Update and Thoughts about Life!

Update on the update: I just finished 10 days of IV antibiotics for the staph infection. I also got IV fluids every day. Please pray we get the staph under control and totally gone!!!

Thank you all so much for your continued prayers and encouragement! 
I feel led to share something with you all because each of you truly make a difference in my life, but first, here's an update! 
Last week I saw my primary care doctor several times, and he sent me to the hospital again on Wednesday. The harsh antibiotics, along with the pain of the staph infection, have kept me from eating and drinking, so I needed IV fluids and medicines to help the nausea and pain. I also received IV antibiotics. I'm now on my 3rd oral antibiotic since last week, and after all we did last week, we think that we're finally on the right track to treating the staph with the right medicines! 
I will be seeing an infectious disease doctor any day now because I shouldn't have gotten staph again so fast. The infectious disease docs can do tests and biopsies to determine if/where the staph is possibly hiding, and they can also help decide if my internal heart monitor needs to come out. It's all speculation at this point, but it's possible that the staph could be attaching to the monitor, which could prevent the staph from going away. The docs can also help me figure out how to prevent more staph infections, because if I'm not careful, I could get them a lot. Hopefully they will be able to help me a lot. So that's where we are right now, and I'm so grateful for doctors not giving up on me and we pray that the staph is totally gone soon! 

What I wanted to share with you...
Over the past 2 weeks, I've let my current circumstances steal my joy and I've lived in fear. 
I don't need to go into details about how I've been feeling physically because you can imagine how I'm feeling with the normal feeling worse after the stem cell transplant + the staph infection + all the antibiotics and side effects that comes with those. 
I get really depressed when I have to be in bed because of being sick. I hardly ever stay in bed most of the day, no matter how bad I feel. Going downstairs and simply opening the back door makes me feel better because I think it helps me see that life is still going on and there's a bigger picture. I see that for me, getting out of bed is like me saying, "I am stronger this this disease and I'm proving that by getting out of bed"! I know others who do better resting in bed, so there's nothing wrong with staying in bed at all. For me, it's just not the best. The weakness from everything right now has kept me in bed a lot because I just don't have the energy to go downstairs sometimes. And being in bed during the day so much depresses me because when I first got sick, I was totally bedridden and so weak like this. It reminds me of those days where we didn't know what was wrong and it's a horrible feeling!
The past few days I've been downstairs more and am trying to stay out of bed as long as possible because it's good for my spirit, but I'm just still really weak. I did sit outside this morning and it was wonderful! 
Recently, I realized that in an unhealthy way, I'm so focused on what's happening right now.

On April 21st, the day I got my stem cells back, I said that it was a new birthday for me, a new chance at life. And I said that because it IS!!!!!!!! I said that I knew I would feel worse for a while before I got better, but that's okay because it would be temporary. I said it over and over and over. 

But I haven't actually been living like I believe that, and I've lived in fear since the staph came back. 

I am SO, UNBELIEVABLY blessed that I was able to finally have the stem cell transplant after being sick for almost half of my 23 years of life. It's giving me another chance at life, and not many people get that 2nd chance at life!

Many of you know that one of my best friends, Rebecca, died of cancer 4 years ago. She would have turned 25 this past Saturday. So on Saturday evening, my family and I went to the cemetery with her parents. I was still so weak but wanted to go, so I took a towel so that I could sit on the ground. Oddly, sitting on the ground was really different than standing there like we always do. Instead of looking down, I was looking across and it gave me whole new perspective, which I'll explain more about.

I then got a much needed big smack on my face. I sat there and wondered what am I doing?! WHY am I so depressed? WHY am I not living like I have another chance at a healthier life, because I do!! Rebecca would have given anything to still be on this earth, no matter how bad she felt. Quite frequently, she and I talked about longing for Heaven and no pain and sickness, but she and I agreed that no matter how we felt, we wanted to live on earth longer with our family and friends before we go to Heaven. 

So there I was, sitting at her grave, and I realized I've been having a pity party because of temporary things I'm dealing with like the staph infection again and feeling worse for a while after the stem cell transplant, but I have no reason to complain! 

Without the antibiotics for the staph, I possibly wouldn't be here today. I have selfishly hated the antibiotics because their side effects are far less than pleasant right now, but people all over the world die every day from something that could be so easily treated with antibiotics and modern medicine. I don't HAVE to take the antibiotics, I GET to take them. Yes, the side effects have sent me to the hospital, but it's temporary. 

I've come to realize a lot lately. 
Like I said, I've been in bed a lot over the past couple of weeks and I didn't see something that had been right in front of me until a couple of days ago. I was always looking down in my bed while watching something on my iPad or whatever, and if I would have just lifted my eyes, I would have seen this sooner. I put those on my wall for a purpose. 

Again, like I mentioned, every time I've gone to the cemetery in the past, I've stood and have had to look down at the graves. But Saturday, because of me being so weak, I had to sit down, and my perspective totally changed. If I was standing up and looking down at the grave, when I lifted my head I would have seen across the whole cemetery and would have seen the countless other graves. And nothing is wrong with that. But when I looked up while I was sitting, I saw the beautiful sky and sunset, the trees, and all of God's creations. I smiled because I just was in awe of God. It took me being too weak to stand for me to lift my eyes. 

And it's the same way with God. I've been so focused on what's going on right now and I've had my head down. I temporarily lost sight of the goal and took my eyes off of Jesus. And that's why I've let my circumstances steal my joy and cause me to live in fear. 

In Hebrews 12 it says this:
"Therefore, since we are surrounded by such a huge crowd of witnesses to the life of faith, let us strip off every weight that slows us down, especially the sin that so easily trips us up. And let us run with endurance the race God has set before us. We do this by keeping our eyes on Jesus, the champion who initiates and perfects our faith. Because of the joy awaiting him, he endured the cross, disregarding its shame. Now he is seated in the place of honor beside God’s throne. Think of all the hostility he endured from sinful people; then you won’t become weary and give up"

No wonder I've been so weak and weary! If our eyes are not on Jesus, we can't run this race without looking down. Without our eyes on Jesus, during the race, we feel like we need to look down to see the roadblocks coming. We need to look down to see the twists and turns on the course of the race. We look down out of fear because we don't know what's coming up next. We are then blindsided at sharp turns and corners. 

But when we fix our eyes on Jesus, we don't NEED to look down because we know that we will make it safety to the end one day! He will pick us up and carry us over the roadblocks and He will hold our hand and walk with us when the road turns. Nothing surprises Him! That's how we can have perservence through this sometimes horribly long and painful race, because when we can't run on our own, Jesus picks us up and carries us! 

Also from Hebrews 12: "So take a new grip with your tired hands and strengthen your weak knees. Mark out a straight path for your feet so that those who are weak and lame will not fall but become strong....
...Since we are receiving a Kingdom that is unshakable, let us be thankful and please God by worshiping him with holy fear and awe. For our God is a devouring fire"

I'm 19 days into the critical 90 days after transplant! I've made it 19 days!!! 
I do want to apologize to you all who have been faithfully praying for me and supporting me in so many ways, and especially helping us financially so that I could have the stem cell transplant in Germany! I want to apologize for letting my current circumstances steal my joy. This isn't the first time it's happened, and it won't be the last, but I just want you to know, I'm BACK and my eyes are on JESUS because I need to be carried through this part of the race, and I am. He's here. Please don't stop praying. Your prayers have helped carry me when I've selfishly taken my eyes off of Jesus. I'm moving on to my new life because of God! 

"Why am I discouraged? Why is my heart so sad? I will put my HOPE in God! I will PRAISE HIM again--my Savior and my God!" Psalm 43:5

If I can smile and laugh through the transplant and after, I can do it now because I have a new chance at life!!!! I'm so blessed!!!!!

I do ask that you specifically pray that the stem cells are doing what they are supposed to be doing. We don't know if they could have turned into immune cells to fight this staph, but we will be talking with one of the doctors tomorrow about that. Please pray that the stem cells are letting the antibiotics fight the staph so that they can heal the rest of my body eventually. 

One of my dear friends who has Lyme just recorded a new song called "Lift My Eyes". That's not a coincidence at all that I just heard this..

"Many are the weapons of my enemies
Right here in this moment give me eyes to see
The God of Angel Armies is surrounding me

I will Lift my eyes
To where my help comes from
I wont be afraid
I wont be undone
Youre more faithful Lord
Than the rising sun
So I will Lift my eyes
to where my help comes from

Nothing formed against me ever could invade
For you are my fortress in the darkest day
Oh I will simply rest and trust you come what may
My help comes from the Maker
Of Heaven and of Earth
My help comes from the Savior
Who saved me by his Word
My help comes from the Healer
Whose stripes have made me Whole
My help comes from the Keeper
Of this peace inside my soul
I will Lift my eyes
To where my help comes from
I wont be afraid
I wont be undone
Youre more faithful Lord
Than the rising sun
So I will Lift my eyes
to where my help comes from"

These are my 4.6 million stem cells that I received!!!!

I love you all so much and can't thank you for all you've done. "I thank my God every time I remember you" Philippians 1:4

Saturday, March 26, 2016

Leaving for Germany Today

Today is the beginning of the next phase of my journey- my stem cell transplant in Germany. Thanks to God and YOUR generosity and prayers, my mom and I leave for Europe today! We leave Oklahoma City around 3 this afternoon and fly from here, to Houston, to Frankfurt Germany, and then to Austria. We are spending the first week in Austria while I adjust to the time difference. I will start treatments April 4th in Germany. 

"I will praise the Lord no matter what happens. I will constantly speak of His glories and grace. I will boast of all his kindness to me. Let all who are discouraged take heart. Let us praise the Lord together and exalt His name" Psalm 34:1-3

Prayer requests for today-
   -Safe flights with no problems 
   -Comfort and peace. On the 10 hour overnight flight I have to get up and walk every 30 minutes to prevent blood clots since I'm at risk because of my heart surgery and PICC line. I'll be wearing compression stockings also but I won't be able to sleep since I'll be getting up so often.
    -That I will not have a lot of pain and nausea 
     -That God will be glorified in everything
    -No problems with my PICC Line
    -Strength for my mom as she takes care of me. 
    -Peace for my brother and dad and others who can't go with us.  

I am very excited and nervous for this trip. Anytime you start new treatments it is scary and full of hope. Traveling halfway across the world for new treatments is also scary and full of hope! But God is with us. 

"When this burden is lifted I'll give praise to Your name, but until it's finished I'll give thanks just the same. For we have this hope as an anchor, you are with us, we will never be alone"

I didn't realize until recently that we arrive in Europe on Easter Sunday. How fitting is that? We're chasing physical healing, but we have peace and hope because the grave was empty! Jesus overcame death to give us live to the FULL!!!!

"So be truly glad. There is wonderful joy ahead, EVEN though you have to endure many trials for a little while" 1 Peter 1:6

"Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hopethrough the resurrection of Jesus Christ from the dead, and into an inheritance that can never perish, spoil or fade" 1 Peter 1:3-4

I love this song called I Will Rise. It's been one of my favorite songs since I got sick along with Psalm 73:26, "My flesh and my heart may fail, but GOD is the strength of my heart and my portion forever". 

"There's a peace I've come to know 
Though my heart and flesh may fail 
There's an anchor for my soul 
I can say "It is well" 

Jesus has overcome 
And the grave is overwhelmed 
The victory is won 
He is risen from the dead 

And I will rise when He calls my name 
No more sorrow, no more pain 
I will rise on eagles' wings 
Before my God fall on my knees 
And rise 
I will rise 

There's a day that's drawing near 
When this darkness breaks to light 
And the shadows disappear 
And my faith shall be my eyes 

Jesus has overcome 
And the grave is overwhelmed 
The victory is won 
He is risen from the dead 

And I will rise when He calls my name 
No more sorrow, no more pain 
I will rise on eagles' wings 
Before my God fall on my knees 
And rise 
I will rise 

And I hear the voice of many angels sing, 
"Worthy is the Lamb" 
And I hear the cry of every longing heart, 
"Worthy is the Lamb" 

And I will rise when He calls my name 
No more sorrow, no more pain 
I will rise on eagles' wings 
Before my God fall on my knees 
And rise 
I will rise"
It's interesting to me when I see or hear comments from people who have just heard my story. Especially with the news story that they did last week about my journey, I've heard even more people say that they think my story is sad. I'm here to tell you that my story is not sad. 

What would be sad is if my stem cell transplant was in Miami. Oklahoma. 😉 but it's in Germany! 

Yes I wish things were different and I'm tired of being sick. Many times through the 10 years that I've been sick, I've wondered how I'm going to get through this season. But I have a God who promises to never leave me. Because I've constantly seen God's never ending faithfulness, even in times of uncertainty, I can look forward to seeing how God will continue to use this journey for His Glory! 

Because of Him, I can run the race with perseverance, even when I have no physical strength. His promises are true, and all of this pain is only temporary. This disease does not define my life. It's a huge part of my life right now, but my identity comes from God. Life is hard, but our bad days shouldn't define our lives. God is good, He is with us, and is our strength. Praise GOD because this disease and the sorrows of this world are temporary. Jesus over came the grave!!! His promises are eternal! 

My family and I can't express how grateful we are for each one of you. Over the last 10 years you have prayed for us and supported us in too many ways to count. We wish we could thank each of you individually but there's too many of you! What a great problem to have! 

You have been so generous and we are about $4,000 from our goal which is incredible! Thank you thank you thank you! 

Please keep praying!!!! We will be able text while we're there and have access to Internet so we will keep you updated. 

God is so good and I love you all 💚

Sunday, March 20, 2016

Stem Cell Transplant Using my own stem cells

My mom and I leave on Saturday to go to Germany for my stem cell transplant using my own stem cells. Tomorrow is the deadline for when we need to pay the clinic in Germany, so please consider sharing my GoFundMe page with anyone you think would be interested in donating or praying! Prayers are just as important! We will keep the GoFundMe going throughout my treatments in Germany. 

My family and I are so grateful for your continuous prayers and support in so many ways since I got sick 10 years ago. We will never be able to thank you enough. I wish I could thank you all individually but there's too many of you! What a great problem to have! Many times I've wondered how I'm going to get through this season. But because I've constantly seen God's never ending faithfulness, even in times of uncertainty, I can look forward to seeing how God will continue to use this journey for His Glory! One of my favorite verses is Psalm 73:26, "My flesh and my heart may fail, but GOD is the strength of my heart and my portion forever". Yes, Life is hard, but God is good, He is with us, and is our strength. Praise GOD because this disease and the sorrows of this world are temporary. His promises are eternal! 

Wednesday, March 2, 2016

GoFundMe for Stem Cell Transplant

Many of you have asked about donating to my stem cell transplant in Germany, so here's the link.

Please share this with those who you think would be interested in helping, either financially or by praying. The money needs to be raised by mid March to meet the clinic's requirements to start treatments on April 4th. 
Your prayers are just as appreciated! 

If you wish to share this on Facebook, you can go to the Pray for Victoria page (link below) and share from there, or just copy the link and post it yourself. Thank you so much for your prayers and support!!! We can't say thank you enough.