Saturday, September 17, 2016
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!
https://www.youtube.com/watch?v=XZrWHxoB4GE
💚 Watch my vlog to see something exciting I did today!
https://www.youtube.com/watch?v=XZrWHxoB4GE
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!
https://m.youtube.com/channel/UCiLLGQbnmXT_Yk-WokqOc_Q
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.
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!
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"
"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
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"
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.
https://www.facebook.com/Prayingforvictoria/
https://www.facebook.com/Prayingforvictoria/
Thursday, February 25, 2016
Stem Cell Transplant in Germany
I've shared some of this information before but I have a lot of new friends who may not know this 😊
For those who don't know, I've had Lyme Disease for about 10 years.
Tomorrow, Feb 26th, is my 23rd birthday! I never thought that I would still be sick on my 23rd birthday, but God is so good and I have hope! Things are going to get better!
"The Lord is my shepherd; I have all that I need. He lets me rest in green meadows;
he leads me beside peaceful streams.
He renews my strength. He guides me along right paths, bringing honor to his name.
EVEN WHEN I walk through the darkest valley, I will not be afraid, for you are close beside me. Your rod and your staff protect and comfort me" -Psalm 23:1-4
I am officially scheduled to begin treatments for the Stem Cell Transplant in Germany on April 4th! They will use my own stem cells for the transplant. I'll explain more about the treatments and transplant in this post, but I first want to share a little of my story with Lyme Disease.
Before I share part of my story, I want to tell you a couple of things. I want you to know that yes, this part of my story is hard, but my story is NOT sad. You shouldn't feel sorry for me. Yes, I wish things were different and I'm tired of being sick, but I have God who promises to never leave me. Because of Him, I have hope and I'm not giving up! God has carried me this far and He won't fail me now! My story is not a sad story because God is in control, He is faithful, His promises are true, and all of this pain is only temporary!
I also want to tell you that this disease does not define my life. It's a huge part of my life right now, but my identity comes from God.
God has something bigger planned for my life. Our stories are greater than what we can see right now. I can't tell you my story without telling you about God, The Ultimate Healer. Like one of my favorite songs says, "Oh to tell you my story is to tell of Him".
Now onto the details.
Why we're doing the Stem Cell Transplant, what I've already done, and what we hope this will accomplish-
My mom and dad have done so much research since I got sick. When I got sick about 10 years ago and no one knew what was wrong, my parents had to become like doctors to get me the care I needed. After 2-3 years of no real answers, they took me to a clinic in Nevada that several people from our church had gone to. My mom had actually been to that clinic a few years before I got sick because our friend needed treatments there and her husband couldn't go with her that time. That was such a blessing because she saw what they did at the clinic and learned a lot. That was not a coincidence, that was God. We live in Oklahoma, but my parents took me to the clinic in Nevada and I was diagnosed with Late Stage Lyme Disease and many co-infections on Dec 3, 2008. We were so happy for a diagnosis after years of no answers, but I don't think we fully realized the weight of that diagnosis. I thought that with a couple weeks of treatments that I would be better.
As we quickly learned, there is no medical cure or standard treatment protocol for Late Stage Lyme, which also means that insurance won't cover any treatments for it. If Lyme is caught immediately, 99% of the time it is curable with a few weeks of antibiotics.
"Lyme disease is caused by a spirochete—a corkscrew-shaped bacterium called Borrelia burgdorferi. Lyme is called “The Great Imitator,” because its symptoms mimic many other diseases. It can affect any organ of the body, including the brain and nervous system, muscles and joints, and the heart."
Since there are no protocols for treatments, Lyme patients are left on their own to figure out what to do for treatments and treatments also depend on what each person can afford since insurance won't pay for it. I've traveled across the country for treatments, and soon will be going across the world to Germany. Most Lyme patients have to travel for treatments.
Some people who have Lyme are on IV and oral antibiotics for years and years and years. I have done both oral and IV antibiotics and my body could not handle it.
When the Lyme bacteria is killed, it causes a herx reaction. *see bottom for more info about a herx reaction*
When I couldn't handle the antibiotics and we learned more about Lyme, we decided to go the more natural route. The clinic in Nevada does mostly alternative treatments.
Instead of using antibiotics to kill the Lyme bacteria, the treatments I've done teach your immune system to recognize the Lyme (it hides from the immune system) and fight the Lyme itself. The treatments support your body while the immune system is "jump started" to recognize and kill the bacteria. These treatments still cause the herx reaction, but my body is better supported with the natural treatments.
I have been doing treatments for about 7 and a half years now. Before I got the Lyme, I was so healthy. I had never had an ear infection, even as a kid.
Lyme Disease is not well known, even though it's becoming an epidemic. Lyme is so destructive, especially when it's not caught early, and I want to share how it's affected me and why I need the stem cell transplant now.
Because I was misdiagnosed for 3 years,
Lyme damaged every part of my body and every organ.
Since I became sick with Lyme, I've been diagnosed with:
-Mono- that's when I first got sick. Lyme feels like arthritis and the flu.
-Gastroparesis-stomach paralysis which causes constant nausea
-Dysautonomia/POTS (Postural Orthostatic Tachycardia Syndrome) -autonomic nervous system dysfunction
-Heart problems- an arrhythmia has caused seizures and has caused my resting heart rate to always average around 130bpm, but it has gone as high as 180bpm or higher, even when I'm just laying down.
-Stage 2 Kidney Disease- was just diagnosed with this a few months ago
-Interstitial Cystitis- also just diagnosed a few months ago. It's a painful bladder disease
-Pain- joint pain, muscle pain, bone pain. Pain everywhere. Pain so severe that requires morphine 24/7
-Brain fog and concentration- the Lyme is in my brain too. When I first got sick, I couldn't even read my textbooks. My parents had to read them to me before I had to stop going to school because I was too sick
-Memory loss- I have very few memories of life before I got sick. I still sometimes don't remember conversations or things I did a few days earlier.
-Endometriosis- I've had 3 surgeries for this
-Ovarian Cysts- I had an orange sized cyst removed and have had many other cysts
-Appendicitis- but my white count wasn't high, I didn't have a fever, so it almost ruptured. My immune system is so weak that it didn't know I had a horrible infection and all the tests were normal. I just had severe pain and was admitted to the hospital and then they did exploratory surgery and found my appendix fixing to rupture
-Gallbladder- stopped working so I had surgery to remove that, then 3 months later is when I had appendicitis and another surgery.
-Weakness-I used to be bedridden and could barely walk
-Insomnia- sometimes no amount of medicines can get me to sleep. Pain plays a role in not being able to sleep as well
-Constant Fever- I have a low grade fever all the time.
-Numbness- my legs and arms go numb
-swollen lymph nodes everywhere
-This list isn't everything of course, but these are some of the major things.
Because of all of that and more, I've had to have:
-my heart shocked. After a 5 hour heart procedure last May, they had to shock my heart in the OR.
-8 surgeries, 2 of them emergency surgeries
-I had a port in my chest for IVs for 4 years and I can even do my own IVs at home.
-5 PICC lines. I'm fixing to have my 6th PICC line placed for the stem cell transplant.
-A spinal tap
-Staph infection from my port that spread to my blood. This resulted in a week long hospital stay, emergency surgery to remove the port once I was stable, and then I got a PICC line and did IV antibiotics for about 7 weeks
-a couple of GI scopes with biopsies of my stomach and whole GI track
-a transesophageal echo (TEE). Instead of doing an ultrasound of your heart from the outside (called an echo), "the ultrasound probe is positioned on an endoscope, is guided down the patient's throat into the esophagus." I was totally awake for this and it was not pleasant.
-So many ER trips. Before I got my first PICC line, I was in the ER at least 4 times a week for IV fluids, nausea medicine, and morphine. That went on for months. Even after being able to do IVs at home, I've ended up in the ER all the time for all the various problems.
-Countless hospitals stays and several days in the ICU
-I used to do IV fluids at home almost every day for many years
-Like I mentioned, I had seizures from a heart arrhythmia and couldn't drive for a year because of them
-On December 1st, 2015, I had a 10 hour heart surgery to fix my heart! I had to be awake for the first 7 hours with nothing but Tylenol and local anesthesia. That was an interesting thing! It's rare that they do the surgery with the patient awake with only Tylenol. But I did it!!! GOD got me through it, along with the prayers of so many, and all the great doctors and nurses with me in the OR. I had 6 nurses and several cardiologists, plus a lot of extra people in there, and they all were so compassionate, knowing how hard it was for me.
-I've seen almost every specialist because of it affecting every organ and body system
In the fall of my sophomore year of high school, I had to stop going to school because I was bedridden and so sick. I'm proud to say that I finished high school on time from home! A teacher would come to my house and I would also do things online. I graduated on time, but I was in the ICU on the day of graduation so I wasn't able to attend. I decided to try and start college when I was supposed to, so I lived in the dorms at Oklahoma Christian University (about 8 min from our house) for my freshman and sophomore years and I only took about 2 classes a semester. The classes wore me out so I didn't get to participate in the social part of college. I also spent a lot of time at home while trying to live in the dorms. I should have graduated college last year, but I haven't taken a class in over a year because of the seizures and heart problems and heart surgery. I know I will be able to finish school later.
All that to say, we do not take this decision to go to Germany lightly. For the last 7 years, I've done antibiotics and alternative treatments at many different clinics around the country. We have been going back and forth to the clinic in Nevada since I was diagnosed. We've spent months and months there since I was diagnosed in 2008. I've also done treatments in other locations. We have seen improvement with those treatments! The amount of Lyme in my body is less because of all those treatments!
And while I've made progress, I'm still not well. My cardiologists, who are known worldwide and who did my heart surgery in December, said they believe that I have autoantibodies that are attacking my body. I was diagnosed with the kidney disease and bladder disease a week before my heart surgery after months of constant kidney infections. The bladder disease and kidney disease (my kidney function is lower than normal) are (most likely) caused by the autoantibodies. "Autoantibodies are antibodies (immune proteins) that mistakenly target and react with a person's own tissues or organs. Autoantibodies are usually just a sign of the disease, not the reason." So Lyme has caused my immune system to attack my organs. The cardiologists said that's what was happening with my heart. There was a line of abnormal cells in my heart which caused the arrhythmia. They were able to fix my arrhythmia in the 10 hour heart surgery in December! But, they said that it isn't a matter of IF the arrhythmia will come back, it's WHEN. As long as the autoantibodies are in my body, they will continue to attack my body, and they'll attack my heart in a new place, causing other heart problems.
Like I mentioned, we have done countless treatments to get rid of the Lyme.
One might ask, well if you've done so many years of treatments and the Lyme bacteria is mostly gone, why am I still so sick and why do I need the stem cell transplant?
For 3 years this disease went undiagnosed, which means that it had 3 years to invade everything.
I'm still having all of these problems because of all the damage that the Lyme did to my body and immune system. Yes, the bacteria load is better (it will never be 100% gone), but the treatments can't fix all of the damage.
Most of the treatments available in the US are just to get rid of the Lyme bacteria from your body, which has to be done obviously. But people who had Lyme for years without being diagnosed find themselves still sick, even after all of the Lyme treatments.
We have been looking at stem cells for a while now and we, along with all my doctors, feel like the stem cell transplant will be the turning point for me. Unfortunately, stem cells are not approved for Lyme in the US.
About the actually stem cell transplant process-
The clinic in Germany mainly just treats cancer and Lyme Disease. A Duke Oncologist just came out and said that in the infectious disease category, Lyme is the equivalent to cancer. If you want to read about it, I'll post a link. My Lyme doctor in Nevada has started treating cancer too.
This is a very simple description of stem cells! There are 2 types of stem cells: embryonic and somatic (or adult) stem cells. So everyone has somatic stem cells once they are born. Stem cells are just cells that don't have a specific purpose yet. It's a lot more complicated than that, but I didn't promise you a science lesson 😊
The estimated length of stay at the clinic is 2 weeks. When I get to the clinic, they will do all of their testing. They will then drive us an hour away to their lab where they will take out my stem cells. They will take the somatic, adult stem cells from my blood by just drawing blood like normal. They want it to be done at the lab so that they don't have to transport them. They will then take us back to the clinic.
In the lab, once they separate the stem cells from my blood, they will then "clean" the stem cells to get rid of any infections or other bad things that circulate in the blood with the stem cells, so in my case they want to make sure no Lyme comes with the stem cells. Once the cells are as clean as possible, they will give them something to make them grow, and they will grow those cells into millions of new stem cells. The process of growing the stem cells takes about 10 days.
While the stem cells grow, I will receive IV treatments every week day for the 2 weeks. Some of the treatments are similar to he natural treatments I've done in Nevada, but they also do a lot of other things. Some of the treatments will kill any bacteria in my body, some will help my body detox, some will help my organs, some will help circulation, some will help inflammation, some will help my lymph system, and I will get a lot of nutrients in my IVs. For each person, they use different treatments so I won't know exactly what I'll be doing until I get there and have testing done.
Since they'll be killing the Lyme and other bacteria, I'll have a herx reaction, just like I do with other Lyme treatments.
Something amazing that they do...I will receive injections that actually resets the immune system and it sets your immune system back by 10 years. I don't totally understand what exactly that means, but It's pretty incredible. I can't wait to hear all that I get to do!
Once the stem cells have grown enough,
they will inject JUST the NEW millions of stem cells into my body. They won't re-inject the ones they took from my body, just to make sure they aren't putting infection back into my body. They don't actually put the stem cells into my veins in an IV, they inject them where a flu shot would go. The reason for that is because that way, it goes into the lymph system and spreads throughout your body in the best way possible.
The goal for this treatment is for the new stem cells to go into my body and repair all the damage caused by the Lyme bacteria. So since the stem cells don't have a specific purpose, they will go to whatever parts of my body need them the most. They can repair tissue, organs, it'll help my immune system, pain, and hopefully a lot of other things! We really need it to help my kidney disease, bladder disease, stomach paralysis (Gastroparesis), heart, auto immune problems, bone and joint pain, and many other things.
Once I will receive the stem cells, about 2 weeks after being there, I will be able to come home!
The first 100 days after the transplant are critical and I will need to take it easy.
The transplant will most likely make me tired for a while. Each case is different and they can't tell me when I'll for sure start seeing results and feeling better. It can take 6 months to a year to see the full results from the transplant, but a lot happens in the first 100 days.
I will be having my 6th PICC line placed on March 25, here in OKC. We don't know for sure when we are leaving for Germany, but we do know that I'm starting treatments April 4th.
I am so grateful for this opportunity to go to Germany. I am nervous, but hopeful. Like I've said, we've done it all and are counting on this transplant to be the turning point.
We have had people ask, and we are setting up a GoFundMe page for the Stem Cell Transplant since insurance won't cover anything and we have to pay for it all 2 weeks before we go. Thank you so much to those who want to donate. Your prayers and love mean just as much or more to us. If someone wishes to donate but not do it online, my church is taking donations for me so you can contact me if you wish to do that.
I'm not shy in asking for prayers because God tells us to pray and He works in every situation, even if we can't see it at the time.
So, will you please be praying about this who process?
Please pray that:
-the PICC line procedure will go well
-we can get the funds to pay for the transplant
-I handle traveling well
-that there are no complications with the stem cell transplant
-the transplant does everything we hope for and more
-that God is glorified in this whole process
My favorite verse since getting sick is Psalm 73:26 "My health may fail, and my spirit may grow weak, but God remains the strength of my heart; He is mine forever".
Nothing in this world is certain. But God is.
He has never left me. I'm so blessed!
"I can see a light that is coming for the heart that holds on, and there will be an end to these troubles, but until that day comes, STILL I will praise You, STILL I will praise You, You never let go, through the calm and through the storm"
Please share this and ask others to pray. It's time for a miracle after 10 years of being sick! No matter what, God is good!
"You get glory in the midst of this
And You're walking with me
And you say I am blessed because of this
So, I choose to believe
As I carry this cross, You'll carry me
And I know Your promises are faithful
And God, I've seen Your goodness in my life
And oh, I've found Your mercy is a river
Your love is an ocean wide"
"I’m waiting on You, Lord
And I am hopeful
I’m waiting on You, Lord
Though it is painful
But patiently, I will wait
I will move ahead, bold and confident
Taking every step in obedience
While I’m waiting
I will serve You
While I’m waiting
I will worship
While I’m waiting
I will not faint
I’ll be running the race
Even while I wait"
*"The Herxheimer Reaction is an immune system reaction to the toxins (endotoxins) that are released when large amounts of pathogens are being killed off, and the body does not eliminate the toxins quickly enough"