Saturday, November 28, 2015

Prayer Group and Picture for My Surgery Tuesday

My sweet friend Alyssa, who also has Lyme made a Facebook prayer group for me. If you want to join, here is the link

Also, Alyssa asks that you change your profile picture to this to show support

I'm so humbled by all the prayers and support. I love you all!

Friday, November 27, 2015

Heart Surgery on Tuesday

(For those who are new here, I am 22 and have had Lyme Disease for 10 years. It has affected every one of my organs, but God is so good! He is my strength and my hope!)

I hope you all have had a great Thanksgiving! We have so much to be grateful for! I'm so thankful for every one of you! You have been such a blessing to me; supporting me, praying for me, and encouraging me. "I thank my God every time I remember you" -Philippians 1:3
I pray that I encourage you too.

This Tuesday, Dec. 1st, is a big big day! It's the day of my long awaited heart surgery. I have to be at the hospital at 5:00am and the surgery starts at 7:30am. It is expected to last all day and could be 10+ hours. It's a rare surgery so it's a little scary.

"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"

"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"

-How we got here-
Ever since I got sick with Lyme Disease 10 years ago, I've had tachycardia, which is a really fast heart rate. My heart rate can be 150bpm even when I'm just lying down, and then goes even higher when I stand up. Until this year, no one has done anything about it. I've seen cardiologists and they haven't looked into it really. When I started having seizures, I was referred to an Electrophysiologist. They are special cardiologists who study the electrical system of the heart.

In May of this year, at the Oklahoma Heart Hospital, I had a procedure called an EP study, done by the Electrophysiologist. According to Google, an EP study "tests the electrical conduction system of the heart to assess the electrical activity and conduction pathways of the heart". During this procedure, they put wires in your heart and have to make your heart rate go up to around 300bpm to make a map of your heart's electrical system. This shows them exactly where the arrhythmia is. I was awake for this procedure and it is not pleasant to have your heart rate that high for hours, but it needs to be done. So during the EP study in May, they found my heart arrhythmia and I was diagnosed with Atrial Tachycardia, which is a specific type of arrhythmia. We found out that the arrhythmia was contributing to my seizures. They then planned on fixing it. During the 5 hour procedure, that I was awake for, they realized that my arrhythmia is too close to the nerve to my diaphragm (the phrenic nerve), so they couldn't fix it without causing damage to my diaphragm. They ended up shocking my heart to get it to slow down, and then the next day, I had a surgery to put in a permanent heart monitor in my chest. I still have that heart monitor and it is right under the skin by my heart. The doctors are able to always see what my heart is doing.

After those procedures, we sent my records to Baylor Hospital in Dallas because they are supposed to be the best at heart procedures. The head of Baylor looked at my case and said that they don't do the procedure I need. It's not a common procedure and is very complicated and risky. That was frustrating since they're supposed to be the best.

We were then sent to OU Medical Center here in Oklahoma City and have been working with cardiologists there ever since this summer. We love them, and they have agreed to try the surgery I need!

-About surgery Tuesday-
On Tuesday, there will be a lot of people involved in my surgery. I will have at least 3 cardiologists, a general surgeon, an internist, anesthesiologists and nurses, and other doctors on stand by if needed. Since it's not a common procedure, they said that there will probably be a lot of people in and out to watch it. I'll be famous! Just kidding. I'll be the only case for the day and the procedure will take most of the day. I will have to be awake for it. Yes, AWAKE, all day, while they try to fix my heart. I'll explain why later in this post.

Many of you have asked what they will be doing during the surgery. Once we get into the OR and they place all the lines and monitors, they will do another EP study, which is what I had done in May. In May, the EP study took 5 hours, and they said that this one Tuesday will be way more detailed, so it could take double that time. 

Once they find the exact location of the arrhythmia, they will start to try to fix it. To do this, they have to move my heart away from the phrenic nerve (nerve to my diaphragm). They have 3 or 4 approaches to try and move my heart, each one more invasive. It is a very delicate procedure. The last approach is for a surgeon to move my heart with his hand. If they are able to get my heart far enough away from the nerve to my diaphragm, they will then do an ablation, which is where they burn off the part of the heart that is causing the arrhythmia. That is the plan for how they will try to fix my heart. 

Like I said, I will be awake for this surgery. Why? They need my heart rate to be really high for the EP study, and then also as they try to fix my heart and sedation lowers your heart rate. They usually don't do this complicated, rare, and long procedure with the patient totally awake, but we've all decided it gives us the best chance of fixing my heart. I will have an anesthesiologist sitting by me the whole time, and if I absolutely cannot handle the pain, or they end up having to move my heart with their hand, they can put me to sleep. Unfortunately, putting me to sleep increases the risks and the chances of success go down. So my goal is no sedation and no pain medicine. My cardiologists are very honest with me and told me it is going to be so painful and uncomfortable, but God will hold me. They will put me to sleep once they are done and as they take everything out of my heart and get me to the recovery room.

I will be in the hospital, possibly ICU, for at least a day, maybe longer depending on how it went and how I'm doing. 

There are several possible outcomes of this surgery because they aren't sure if it is going to work. The best outcome would be that they are able to fix my heart and that the arrhythmia doesn't come back. They are worried that my immune system is attacking my heart, causing the arrhythmia, and that if they fix it, that my immune system will attack another part of my heart and create a new arrhythmia. We are praying that doesn't happen. There's also a possibility that they get in there and can't get my heart away from the nerve so it would be too risky to try to fix. It's scary knowing there are so many things that could happen, but I really have the best doctors in the world, and God holding me, just like always. My surgeons are worldwide known for their procedures.

"It is well, it is well, through the storm I am held, it is well, it is well with my soul" 

My surgery has been rescheduled a lot and was supposed to be last week. I got pneumonia and we needed to get my kidneys checked out, so my cardiologist called and said that it would be too risky to do last week, so they moved it to Dec.1st. Unfortunately, one of my cardiologists was scheduled to be out of town on Dec.1st and I was bummed because he's so caring. A few days later, he called to say that he cancelled his whole trip just to be in my surgery. How incredible is that?! I'm SO grateful! Not many doctors would do that, but mine really care. It's a big surgery and he wants to be there for me. I'm blessed to have such great doctors!

I had pre-op tests a couple weeks ago and they all went well except for when they needed to get blood work. I've had 5 PICC lines and I had a port in my chest for 4 years for IVs because my veins are so bad. The pre-op tests took 4 hours because they could not get blood. They called in everyone and even tried in my feet and couldn't get anything. So, they're going to put a femoral central line in once we're in the OR so that they don't have to try to get normal IVs. They said they need lots of access for the surgery, so they'll put several central lines in once we're in the OR since they're tricky to put in. 

This week I finally saw a Nephrologist (kidney doctor) and was diagnosed with Stage 2 Kidney Disease, which means my kidneys aren't functioning as well. It's not a big deal right now, we just have to watch it. That helps explain my enlarged kidney, a cyst in my kidney, and me retaining fluid. My heart and kidney problems are causing me to retain fluid so I'm on diuretics for that. I was also diagnosed with Interstitial Cystitis or IC, which is an autoimmune problem that affects the lining of the bladder. It causes the bladder lining to be so inflamed that it bleeds and it causes severe pain and feels like you have a bladder infection 24/7. I have so many autoimmune problems. My stomach paralysis, neuropathy, they said kidney and heart problems might be auto immune, it's crazy. We'll be looking at treatments after my surgery. 

This is all a lot to take in, but I have peace because of God. You all have been praying, and God has given me peace. 

Sometimes when we are overwhelmed, we don't know what to do. But I love 2 Chronicles 20:12. It says, "For we have no power to face this vast army that is attacking us. We do not know what to do, but our eyes are on YOU." 
Look to God!

"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day." 2 Corinthians 4:16

Prayer Requests: 
  • Peace for my family and I as Tuesday gets closer
  • Peace and patience for my family and friends as they wait during my surgery since it'll be an all day surgery
  • That they be able to get the central line IVs in easily
  • That I'll be able to do the surgery without sedation and not be in a lot of pain
  • That the surgery will work and the arrhythmia won't come back
  • That there will be no complications during and after surgery
  • That recovery will go well
  • That I will be able to show God's love to the doctors and nurses taking care of me
  • This is odd, I know, but please pray that my bladder problems don't flare up during and after surgery. Bladder catheters really irritate things and I'll have to have one for the procedure and after when I'm on bed rest for 6 hours to prevent bleeding from where they went into my heart. 
My surgeons told me to make a playlist on my phone to play in the OR since it'll be such a long surgery, so please comment with encouraging songs! Also, I'm making a poster with encouraging Bible verses to have while I'm in the hospital, so please also let me know your favorite verses! I hope that the songs I choose will encourage the surgeons and nurses as well! I hope I can talk to them about how God has gotten me through everything and talk to them about the meaning of the songs! 

Honestly, I'm scared. I'm scared about the pain, being awake during the long surgery, and scared that it might not work. But because of God, I can be scared, but not terrified, I'm tired, but I'm still fighting. All because God. He gives me strength to go on!

2 Corinthians 4:8-9 says what I'm feeling perfectly. 

We are praying that this surgery works. If it does, we will have a huge celebration! But even if it doesn't, God is STILL good, He is STILL faithful, and we will be okay! Just like in Daniel 3, Shadrach, Meshach, and Abednego were going to be thrown into a burning furnace for not bowing down to the King. They said that God was able to save them from burning in the fire, but EVEN if God didn't do that, they would STILL praise Him and He was STILL GOOD. I hope to live life like that. Even if my heart isn't fixed, I will STILL praise Him! 

I will update as soon as possible after surgery. Please be praying!!!

If you want updates sooner, you can:
  • Follow me on Twitter (@VictoriaShariW)
I will have my family update my social media throughout the day as they get updates from the OR!

Tuesday, November 24, 2015

Will post more soon but wanted to let you all know that my heart surgery is Tuesday, Dec. 1st, so a week from today. Please be praying about it! I have to be awake for it and it will last most of the day. Thanks for your prayers! 

Wednesday, August 5, 2015

I Press On!

I press on.
One day last week after being up a lot of the night in pain, I didn't think I could function and I didn't physically feel able to get out of bed that morning. 
Ever since I got sick, I've dealt with fatigue, weakness, nausea, and pain every day. There hasn't been a day in 8+ years when I haven't struggled with those things. I've gotten used to dealing with those symptoms, and most days I push through them. 
But on this day last week, especially because of my heart problems, heart medicines, and diuretics, the fatigue, weakness, and nausea were overwhelming, along with the pain. I just wanted to lay in bed and not get up. The diuretics also cause my blood pressure to be low, which adds to the fatigue and weakness. But that day, I didn't let those problems win. I GOT UP! 
Before I got up, I asked God for strength, decided that that day would be a good day, got up, and did my devotional! I then walked .53 of a mile on the treadmill and lifted 5 pound weights for about a minute! That is a huge accomplishment! I hadn't done that since my surgeries and 3 hospitalizations in May. 
I'm trying not to let the side effects win! I'm thankful for these medicines, even though they cause me to feel bad. Unlike a lot of the world, I have access to doctors and medicines, and for that I am so grateful! I really am blessed. The heart medicines that I'm on help keep my heart rate lower (my resting heart rate goes up to 180bpm), and they also help keep my heart rate in a normal rhythm. The heart medicines that lower my heart rate and keep it in rhythm have caused me to retain a lot of fluid. I gained a lot of weight and we couldn't figure out why until my hands and feet started swelling. We found it that it's from me retaining the fluid. I've now lost over 10 pounds of fluid since my doctor put me on diuretics a few weeks ago, and I'm so thankful that the fluid is coming off! My hands, feet, and abdomen are still really swollen, so I still have a lot of fluid to get rid of. Praise God for diuretics and heart medicines, no matter how bad they make me feel! They are helping my heart. 
Like I've mentioned, hearing that my heart arrhythmia is too complex for the doctors at Baylor who specialize in complex arrhythmias made me really upset. Their hospital is one of the best heart hospitals in the country, so when they said that my case is too complicated and that they couldn't fix my heart, I got very discouraged, especially since everyone told us to go to Baylor because they're the best. 
But now I see God opening new doors which is so encouraging! He never closes a door without opening a new one. I'm seeing all the positives of (hopefully) having the heart surgery here, closer to home, and I praise Him for that! I've heard so many good things about my new specialized cardiologist and am excited to meet him on Monday and hopefully move forward with the procedure to try and fix my heart. Then after the surgery, I can hopefully get off a lot of these medicines! 
Last week we had friends over for dinner and I cleaned the house while my parents were at work! I try to clean something every day and do some laundry. I also walked on the treadmill on Saturday for 5 minutes, which isn't much, but I did it! Yesterday, I cleaned the kitchen while doing laundry, then made my grandma's recipe of lasagna for dinner (I did it even when I was nauseous!), and then cleaned the kitchen up again, all before my family got home! After we ate, I put the dishes in the dishwasher and straightened the kitchen up again (yes, we mess it up pretty quickly). I also water the flowers outside every day, which can take a while because we have so many beautiful flowers! 
I'm trying to live each day to the fullest. It's hard when I can't drive. I'm stuck at home most days and feel like I'm not contributing anything to this world, so cleaning and things like that at home give me a purpose and it's helpful to my family. 
I do have days where all I can do is lay on the couch and sleep. I might not be able to walk on the treadmill much or be up a lot every day, but last week I did, even when I thought I couldn't, and that's all that matters! I've cleaned and done a lot despite the horrible side effects. I take it a day at a time, and sometimes hour by hour or minute by minute.
I love this line in this song "When I still don't get it, I press on!". I might not always see God's plan or understand why things are happening, but I press on! I hope that each day I can say that I did that! That I pressed on despite difficulties. Here are some lyrics from the song "Press On". 
"I must confess that I still don’t get it all,
Lord, I believe that all your words are true
Doesn’t matter where I’m going if I’m going with You
I press on, I press on, I press on
When I still don’t get it, I press on!"
These verses encourage us to run the race while keeping our eyes on Jesus! I'm sharing 2 versions of these verses because I like them both. The first is NIV/NLT and the second is from the Message. 
“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 entangles us. 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 at the right hand of the throne of God. Consider Him who endured such opposition from sinners, so that you will not grow weary and lose heart.”
-Hebrews 12:1-3
“Do you see what this means—all these pioneers who blazed the way, all these veterans cheering us on? It means we’d better get on with it. Start running—and never quit! Keep your eyes on Jesus, who both began and finished this race we’re in. Study how he did it. Because he never lost sight of where he was headed—that exhilarating finish in and with God—He could put up with anything along the way: Cross, shame, whatever. And now He’s there, in the place of honor, right alongside God. When you find yourselves flagging in your faith, go over that story again, item by item, that long litany of hostility He plowed through. That will shoot adrenaline into your souls!” 
When I'm weary, I will press on. When I'm discouraged, I will press on. When I'm scared, I will press on. When I'm frustrated, I will press on. Why? Because Jesus pressed on despite all the persecution towards Him, even death on the cross. He ran the race with His destination in mind-Heaven. He pressed on by thinking of the joy awaiting Him. I can press on with joy knowing this pain is not going to last forever. I can press on because each step gets me closer to Heaven. 
I encourage you to press on. We have an eternal reward at the end of our race! PRESS ON, brothers and sisters! 
How do you press on? How can we encourage each other to press on?

Saturday, August 1, 2015

-New Facebook Page- Check it out!

I recently started a Facebook page called "Finding God in the Midst of Your Storm-Victoria's Fight With Lyme Disease". The reason I started a Facebook page in addition to this blog is because it reaches different people and it's really interactive with a lot of feedback and conversation. I really get to know the people who follow and comment on the page and I love hearing people's stories and experiences!

On the page, I'm sharing ways that I've found to grow closer to God, especially when you're going through a difficult time. I also share stories about how God has gotten me through difficult days, and the things I've learned from being sick. I post updates on my health and what's been going on. I'm also sharing several posts that I've written on this blog, as well as new posts that I write. 

I pray that it encourages others like 2 Corinthians 1:4 says, "He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us". God has comforted me and my goal is to bring others to know Christ and the hope, peace, joy, grace, and forgiveness that He gives. 

From now on, I hope to post on this blog and my Facebook page regularly because I love to share what God has taught me and what He's doing in my life! I love being able to share these things even when I don't feel great, because I can post from anywhere such as my bed, the couch, the hospital, when I'm outside enjoying the weather, or anywhere!

You don't have to have a Facebook account to see my page! It's a public page for everyone to find. I think you do have to have a Facebook account to comment on the posts, but if you want to just look at it you don't have to have an account.

This is the cover photo that I made that's on the page.

This is (hopefully) the link to the page! If it doesn't work, let me know and I can fix it!

Hope you all are having a great weekend! I'm thankful for each one of you!

Monday, July 20, 2015

How my prayer life has changed with a couple simple things!

I grew up in church and almost lived there because my family was really involved. My grandparents came to our church when the church was really new and my mom was only 2 or 3, so she has gone there almost her whole life and I have gone there my whole life. Growing up in church is a blessing because you have a strong foundation and support system from the beginning. Unfortunately, something that happens when you have gone to church your whole life is that you stop studying the Bible in depth, and you just skim over the verses because you’ve heard them so much. This happens to me more than I would like to admit. 
For example, I’ve heard/read 1 Thessalonians 5:16-18 a thousand times. “Always be joyful. Never stop praying. Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus.” Other versions of this verse say “pray without ceasing” and “continually be in prayer” and “pray constantly”. I probably have this verse memorized. That’s great that I don’t even have to look in my Bible to remember this verse, but that becomes the problem. I don’t look in my Bible, and I just repeat the verse and don’t think about what it’s really about. 
Last year or so, I wanted to actually try to live what this verse says. I wanted to never stop praying and be thankful in all circumstances and once I did it, it changed everything. 
I think a lot of us feel like our prayers have to be extravagant and formal. We hear the prayers said at church or read prayers posted on facebook or blogs and we think our prayers aren’t good or long enough. While I think that it’s good for us to take prayer seriously, I think that just like Bible verses, prayer can also become really routine if we just repeat the same structured prayer. I think we over-think it a lot. We then don’t grow in our prayer life because we repeat the same thing without thinking about the words we’re praying. God just wants to hear our hearts. Have you listened to a child’s prayer lately? They are the simplest prayers. Their prayers aren’t organized, thought out in advance, and they don’t use big, fancy words. In the Bible, Jesus told us to be like little children. To have faith like them. I think we can also learn about how to pray after listening to their prayers. Their prayers are honest and from the heart, not holding anything back. 
So when I started trying to pray continually and give thanks in all circumstances, I started with something so simple and found that like I said, our prayers don’t have to be formal. The goal is to be in constant communication with God. I don’t have this totally figured out and I never will because I’m human, but this is what I’ve found to help. You’re probably going to think that this is way too simple to actually make a difference but please give it a try for 3 days and see how it changes you and your relationship with God! This is what I did and still do every day. 
(I say all of this in my head unless no one is around)
When I wake up, I say “thank you God for this day”! I walk into the bathroom and say thank you God for letting me have a bathroom, especially one that’s cute and air-conditioned. I then wash my hands and thank God for fresh water and soap. I walk down the stairs and as I’m walking down, I thank God that I was able to go down the stairs, because there are times when I haven’t been able to. I get my morning medicines and a drink and thank God for my access to medicines and the many drink options that I have. I let our dog out and thank God for my dog who brings joy to my life. I notice the flowers and thank God for the beautiful flowers. I go to the kitchen to get something to eat and thank God for the abundance of food. I see or talk to my parents or brother and thank God for them. I walk back upstairs to my room and thank God for the ability to walk up the stairs. When I get upstairs, I have to sit on my bed for a minute to catch my breath and rest. I thank God for a comfortable bed to sit on and the opportunity to rest. When I go to the doctor and have to wait forever, I thank God for the opportunity to see a doctor. When I face challenges during the day, I find something to be grateful for. So when I face problems at the pharmacy, I thank God for the air conditioning and insurance, even though insurance is causing the problem. When I’m having my blood drawn or having an IV started and they’re on the 6th try, I thank God for the chance to talk to the nurse helping me and the medical care I’m receiving. When my dog throws up on the carpet and I’m cleaning it up, I thank God for the carpet being there in the first place because it’s soft and nice. 
I think you get the idea. I know it sounds almost ridiculous how simple it is, but it really changes your perspective and opens your communication with God. I find myself less stressed when I find things to be grateful for. Please give this a try and let me know how it went! 
What are things that you do to help strengthen your prayer life and relationship with God?

Friday, July 17, 2015

My Story

“My flesh and my heart may fail, but GOD is the strength of my heart and my portion forever!” Psalm 73:26

This story is not just mine. It’s God’s as well. I couldn’t have made it through all of this without Him. My purpose in sharing my story is to show that God can get you through anything. 2 Corinthians 1:4 says “He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.”

A lot of horrible, sad things have happened to me, but they’ve also happened to you. And to your neighbor. To everyone. But my story isn’t a sad one. How could it be with God involved, giving me strength, hope, perseverance, and courage? I will have that happy ending because of the promise of Heaven! Yes, a lot of bad things have happened to me, but even more good things have come out of it, only because of God! “Even so, it is well with my soul”. I know a lot of people have it worse than me so please don’t take any of this as complaining.

Growing up, I was (and still am) very blessed with a great family, friends, and church family. I gave my life to God in baptism on August 21. 2005! My dad baptized me and it was the night before my 7th grade year.
I’m 22 now, but I was 13 and in 7th grade when I found a tick on me at church camp. I pulled it off and didn’t think much about it. Everything was fine until a year later when I got mono in 8th grade and missed a month of school. Instead of getting better from the mono, I started getting worse. The doctors just said that it was mono and that I would get over it. I still didn't improve and really struggled during my freshman year of high school. In the fall of my sophomore year, I got so much worse and could barely make it to school for even half a day. My parents had to read my text books to me because I couldn't anymore. So in October of my sophomore year in 2008, I had to stop going to school because I was so sick and was bedridden. The doctors still didn’t know what was wrong, but they said it could still be the mono, or that I was making it up for attention, or that it was fibromyalgia, or all of the above. When I started treatment for fibromyalgia, I kept passing out because the medicine they put me on was not approved for people under 18, and I was several years younger than that. We had been doing research for a while because the doctors here in Oklahoma had no clue as to why I was so sick and then I remembered the tick that I found on me in 7th grade. After researching more, we suspected that I had Lyme Disease because I had every symptom besides the bull’s eye rash, which most people never have. My main symptoms were constant fever, joint and bone pain, tachycardia (very fast heart rate), fatigue and weakness so bad that I could barely walk to the bathroom, shortness of breath, constant headaches, nausea, memory loss, and many, many more. One of our friends had Lyme and MS and goes to a clinic in Nevada at least once a year for treatments, and one year her husband couldn't go, so she asked my mom to go with her. So my mom went with her to the clinic several years before I got sick, and she learned about all the treatments and about Lyme. We had no idea that I would need to go to that clinic a few years later. That was definitely God working to have my mom see all that they do at the clinic and learn about this horrible disease. God’s plan is always perfect! With me getting worse and worse and no one here figuring out why, my mom and I flew to Nevada to go the clinic that she had gone to with our friend. The clinic mainly specializes in Lyme, but they also treat MS, Lupus, ALS, and other hard to treat diseases, and now they are treating cancer as well.

My mom and I got to Nevada on December 1st of 2008, and on Dec. 3rd, I was diagnosed with Lyme Disease. Not just Lyme Disease, but late stage, chronic Lyme Disease. It’s the late stage because the bacteria had 3 years to spread to every organ, every system, every tissue, and every joint and bone. I also got a few co-infections from the tick that are just as hard to treat, or sometimes harder, than Lyme. We were so grateful for a diagnosis and thought I would be better within a few weeks at the clinic. How little we knew back then. I started the harsh treatments and we quickly learned that there wasn’t an easy fix for this stage of the disease. If I had been diagnosed right when I got sick, the disease would have been curable. We got home from the clinic a few days before Christmas, and that Christmas meant so much more to me than previous years. I was so sick but I actually focused on the meaning of Christmas, and not all the stuff you get. I was happy just spending time with family and thanking God for sending Jesus. Being sick changes your perspective a lot.  I went back to the clinic in January after the clinic opened after Christmas.

Since 2008, we’ve spent about 7 months at the clinic ranging from a 2 to 10 week stay. I did the last half of my sophomore year and the rest of high school from home with a program called Homebound for students that can’t go to school because of health problems. I was assigned a teacher from my high school and she came out at least once a week to help me. The teacher they assigned me to is so sweet and we still talk! I’m so grateful for her. I actually graduated from high school on time through Homebound! Unfortunately, I was in the hospital on graduation day and was put in ICU a couple days later, so I missed all of the graduation festivities, but I got my diploma!

I was able to take 1 or 2 classes during my freshman and sophomore year of college in 2011/2012, and 2012/2013. I even got to live on campus for most of that time! It was great to have some independence and do normal things.

I was unable to start my junior year of college because I was in Nevada at the clinic for 10 weeks, along with Chuck Norris (yes, THE Chuck Norris. More on that later!), when school started. What was supposed to be a 4 week trip turned into a 10 week stay. I got a staph infection in my port and was in the hospital for about a week in Nevada and I was on IV antibiotics for 7 weeks. I got to come home to Oklahoma and finish the last 2 weeks of IV antibiotics at home. It took a long time to recover from the staph and I got an intestinal infection from all the antibiotics. I also began getting sick to my stomach more often and it kept getting worse. It got to the point where I was throwing up everyday and that was when my GI diagnosed me with Gastroparesis.  I spent the winter and spring of 2014 trying to get the nausea and vomiting under control.

In the summer of 2014, before what should have been my senior year of college, I started having seizures. They became more frequent and once again, no one in Oklahoma could help me because I’m so not a textbook case, which means they have no idea what to do. So in September of 2014, my mom and I went to the clinic in Nevada and they found where the seizures were coming from in my brain, and that my heart was causing problems in my brain. I was at the clinic for only 2 weeks and that helped a lot, but I’ve still been doing treatments in Oklahoma for the seizures. 

Because of what they found in Nevada with my heart affecting my brain, I saw a new cardiologist this year in April who specializes in the electrical part of the heart. He wanted me to do a tilt table test and see what that showed. He told us what he thought the problem with my heart was, but wanted to confirm it. The tilt table test showed that I do have POTS, which means that your autonomic nervous system doesn’t work correctly. The autonomic nervous system is responsible for everything you don’t consciously do, such as breathing, heart rate, and digestion.

The test also showed that my heart rate goes up to 180bpm even when I’m not doing anything. My heart rate also shoots up when I’m standing and that has to do with POTS. After the results of a couple tests that the cardiologist did, he gave us our options.

In May, I was admitted to the heart hospital 3 times within 11 days. 2 admissions were planned and 1 was through the ER. The first admission was scheduled, and it was for me to start on a new heart medicine. I was in the hospital for 3 days, starting on Wednesday May 6th, as they monitored me on this new medicine. Unfortunately I wasn’t able to stay on the medicine due to the side effects. I was discharged that Friday night and was back in the ER that Sunday because I passed out twice and my heart rate was higher than it should have been since I was on heart medicine. They admitted me after IV medicines didn’t bring my heart rate down. I was scheduled for a procedure in late June to try and fix my heart, but after all that happened during my hospital stays, my cardiologist moved the procedure up to that Friday. I got to go home Monday, the day after I was admitted through the ER, so that I could get ready for the procedure that Friday. God answered our prayers by getting me in faster for the procedure!

On Friday, May 15th of this year, I was admitted to the hospital for the heart procedure. The plan was for me to go home that afternoon. We got to the hospital at 7am for my 9am procedure. The nurses there knew me since I had been there so much and they didn’t even try for an IV, they just called the PICC line team. So I got my 5th PICC line. The heart procedure was going to be a minimum of 4 hours and could be double that. My doctor came in to explain the procedure and risks and told me that it was going to be very uncomfortable. I really appreciated him telling me that, because some doctors don’t see you as a person with feelings, but just as a statistic or number. After hearing details about the procedures and everything, I got really nervous. They were getting ready to take me to the OR and I asked my dad to say a prayer. There were 3 nurses and my anesthesiologist in my room running around, trying to get things ready and they all stopped when my dad prayed. I felt peaceful and I knew that God would take care of me.

They took me to the OR at 10am and got me hooked up to everything and then put me to sleep. While I was asleep, they put at least 6 wires in my heart and an arterial line in my wrist to be able to constantly watch my blood pressure. Once everything was in place, they woke me up and I found that my hands were tied down so that I wouldn’t move. I panicked because my hands were tied down, I could feel the wires in my heart, and I could feel other fun tubes in me. The reason I had to be awake for the procedure was because they need your heart rate high to find the location of the arrhythmia, and sedation lowers your heart rate. They said if I needed it, they would give me sedation and pain meds during the procedure, but that would mean they would have to use more medicine to raise my heart rate. My goal was to not have any extra medicines. With a medicine like adrenaline, they would slowly increase the dose to make my heart rate go up. It would go up to 250bpm which doesn’t feel great! That made me feel so weird because it also went into weird rhythms. He would leave it like that for a few minutes as he did things with the wires and then he would turn the medicine off to let me rest. Then he would repeat the process. That went on for 4 hours. A nurse was updating my family every hour. Around hour 4.5, he said he found the arrhythmia and it was what he thought it was! I was so happy! And then I saw his face. I asked what was wrong but he didn’t answer for a while. He told someone in the “control room” that is behind glass in the OR to do something, and I felt my right diaphragm moving in and out. It was one of the weirdest feelings. He had them stop and let me rest and then asked them to do it again while he messed with the wires. They did it probably four or five times. I had stopped asking questions by then because I wasn’t getting answers. Finally, my cardiologist said that he couldn’t fix my heart. The arrhythmia is located exactly where the nerve to my diaphragm is. If he would have done the ablation to try and fix the arrhythmia, it would have damaged that nerve and I wouldn’t have been able to breathe. He then told me that he was going to put me back to sleep and shock my heart to reset it, to help lower my heart rate, and to get it back into a normal rhythm. I said WAIT! We didn’t talk about this! I didn’t know this was a possibility! I told him to go tell my parents about what he was going to do. I now have no idea why I told him to do that because that didn’t affect anything, but he wanted to go tell them anyway. I was just really scared. So he went to talk to my family and the anesthesiologist put me back to sleep. They shocked my heart (cardioversion) and I woke up very sore and upset. I was upset because he wasn’t able to fix my heart and that they had to shock me, and was in pain from it all. The procedure ended up lasting 5 hours and I made it through without any extra sedation or pain medicine! The only way I got through it was by praying to God and from all the people in the OR talking to me and holding my hand.  

My cardiologist came to see me once I got to my post-op room to see how I was doing and said that I would need to stay the night in the hospital. I had to be on bed rest until 10pm that night because of the risk of bleeding from the 2 places where they went into my heart. I was actually relieved to hear that I had to stay overnight because I was scared. It’s a horrible feeling when your heart rate is 250bpm. It’s hard to breathe and your body and mind start panicking because it is not supposed to do that. I was also a little shaken up from the cardioversion. I realize that it is a common thing for people with arrhythmias, but I never thought that I would need one when I was 22. My cardiologist then said that he would like to add a new medicine to my other heart medicine. He also wanted to put in a permanent heart monitor. He joked and said he could do it right then, and I said NO! Haha I was done for the day and he was just kidding! But he said he could do it the next morning. They took me to my room upstairs and I had lots of visitors which was great! They helped to take my mind off the chest pain and pain from the fun catheter! At 10pm exactly, I asked the nurse if she could take me off bed rest. I had been in the hospital bed or the OR table for 12 hours by then and I was ready to move around and try and get comfortable. The nurse took out everything besides my PICC line, and I was able to take a lap around the nurse’s station and then I was ready for bed!

Early the next morning, Saturday May 16th, my cardiologist came to my room to explain the surgery to put in the heart monitor. I thought it was amazing that he was working on Saturday, especially since he works Monday through Friday. I had the BEST nurse that day. I told her my concerns about sedation not working on me and she said she would be waiting for me when I got back to see how it went. The surgical team came to get me around 9am and took me to the OR. They asked me about sedation and I told them that what they were going to use doesn’t work, but they didn’t listen very well. Long story short, sedation didn’t work and I could feel everything. There was also a drape over my head (not resting on my face but above it) because they had to keep my chest sterile. The nurses had to hold me down because I was shaking from the pain. The procedure itself only took about 10 minutes, but it was horrible. As they took me out of the OR and back to my room, I couldn’t help but just cry. The day before was supposed to be a simple procedure and it turned into so much more, and then the next day I had this surgery to put in the heart monitor. My chest had a lot of trauma to it within 24 hours with the PICC line placement as she tried to push it around in my chest for a while, then the wires in my heart for 5 hours, then they shocked my heart, and then this surgery the next morning on my chest, near my heart.

When I got back to my room, my nurse was waiting for me like she said she would be. The OR nurses told her it was a rough procedure for me and she came in to comfort me. She was able to work on getting my pain under control. They said I could go home as soon as I felt well enough and ate, but I had no appetite after all that and didn’t feel ready to leave yet. I finally ordered something in the afternoon and made it look like I ate a lot and I got to go home early that evening! My heart monitor records my heart rate at all times which is pretty amazing!

My cardiologist was humble enough to say that he didn’t have enough experience to do the procedure that I needed since my arrhythmia is in such a tricky location. After talking with several of my doctors, and even many friends, they ALL recommended that I go to Baylor Heart Hospital in Dallas for my next heart procedure. They will have to move the nerve to my diaphragm out of the way, do the ablation to where the arrhythmia is located, and then put the nerve back. If all goes as planned, I will be having this procedure in the next couple of weeks by a very experienced doctor who specializes in complex arrhythmias. It will be a very delicate and precise procedure because they’ll be moving the nerve that helps me to breathe! I believe that God will use this doctor to fix my heart with no complications! I’m putting my trust and hope in God, not in doctors alone. We’re praying they are able to fix my heart easily with no complications. I’m now on my 4th heart medicine because we’ve had to switch so much because of the side effects. I was also started on a diuretic last week because I’m retaining a lot of fluid and my hands and feet and body are all swollen. In a week, I’ve lost 5.5 pounds of water weight. The heart meds leave me with little energy. We have been in contact with Baylor and on Monday they will let me know when my procedure will be. For now I’m just fighting the side effects.

Since getting sick, I’ve had 5 PICC lines, a 5 hour heart procedure, a cardioversion , 2 endoscopies with biopsies, echocardiograms and a lot of EKGs, and too many other procedures to name.
I’ve had 7 surgeries:
1. A port placement
2. Cholecystectomy (gallbladder removal)
3. Three months later I had an appendectomy (appendix removal) and they also removed an orange sized ovarian cyst and endometriosis.
4 and 5. I had two more abdominal surgeries to remove more endometriosis
6. Emergency surgery in Nevada to remove my port because it had staph in it and the staph had spread to my blood, which makes you very sick. I was in the hospital in Nevada for 6 days and then did over 7 weeks of IV antibiotics every 8 hours. I had the port for 4 years which is a long time in the port world! A port is a permanent IV, like cancer patients have, so that they don’t have to find veins in your arms to get an IV. It allows you to do IVs at home also after you get trained.
7. My most recent surgery was in May to put in a permanent heart monitor. It looks kind of like a flash drive, but longer and skinnier. They put it in my chest, close to my heart. It sends the constant recordings to my doctor.
Some day I’ll have to have another surgery to take the heart monitor out, but it’s not a big deal.

So this is what I’ve had to overcome, and have overcome them only with God’s strength: I had problems with my gallbladder and appendix and they had to be taken out. I have Gastroparesis (stomach paralysis), which means the muscles and nerves in my stomach don’t work like they should, so that causes constant nausea and intestinal problems. Some days I have to take 3 nausea medicines and used to have injectable nausea medicine all the time. I’ve had problems with my liver, kidneys, bladder, and every organ and body system. I have problems with my brain (the problems are not just normal forgetfulness that everyone has), so I have brain fog, trouble concentrating, and a really bad memory. I hardly have any memories from my childhood and before I got sick, and I can look at a text and have no memory of sending it the day before. I’ve been to the ER at least a hundred times, most likely more, and for several months in 2009, I was in the ER every other day for IV fluids and nausea and pain medicine.  I have quite the collection of cute hospital bracelets! Once I got my first PICC line, I was able to do IV fluids at home 3-4 times a week for several years. Pain has been one of my main and worst symptoms since I got sick and it got to the point a few years ago where my pain management team put me on morphine everyday. I’m just now getting to a point where I’m starting the weaning process to get off daily pain medicines. It’s at least a year long process because I’ve been on them so long. I’m proud of what I’ve done so far in terms of weaning the medicine because it’s very difficult. I see a doctor who does medicine weaning, so she has a schedule for me and I still have a ways to go.

I don’t think there’s a part of my body that I haven’t had a problem with. Being sick for so long is scary and hard to deal with. Watching your friends graduate college, get real jobs, get married. It’s hard. Then insurance doesn’t pay for my treatments in Nevada at all. None of it. All of this can be very discouraging. If I didn’t know God, I don’t think I could get through this. It seems like I can’t ever get a break. But then I remember what God has gotten me through. If I’ve made it through this much so far, I can make today a great day no matter what because God is my hope, joy, strength, comfort, and my purpose. My suffering is only temporary, and I am so blessed despite what I’m going through. I’ve felt God’s strength because I’ve been so weak. I’ve been filled with God’s joy because at times, mine has been gone, leaving me empty. I’ve felt God’s peace that passes all understanding because I’ve been in distress. Because of Jesus dying on the cross and coming back to life, I have Heaven to look forward to! Knowing that one day I’ll have no more pain, tears, suffering, or sickness makes what I’m going through a little easier because it’s all temporary. I can also see that my suffering has purpose. I can encourage others, just as God has encouraged me. If I can bring just one person to know Jesus, then all of this is worth it.

There’s something else that’s a big part of my story. When I was baptized, I felt God’s presence like never before because I received the gift of the Holy Spirit. There are 3 other days that I have felt the closest to God and that have made a huge impact on my life. They are days when my loved ones went to Heaven.

I will write more about these 3 days because God showed me so much. In 2012, I sat by my best friend as she took her last breath in this world after a long battle with cancer. Most people say she lost her battle to cancer and I hate when people say that! Rebecca did not lose. The devil did. Because Rebecca was baptized and followed Jesus, she is alive and well in Heaven! Death did not win! God did! I will share more later about my friend Rebecca and what happened the last few months of her life and what happened the day she died.

Less than a year later, my grandma (my mom’s mom) got very sick. 2 days before she died, my grandpa (her husband and my mom’s dad), was diagnosed with cancer. On Feb. 15th, I was rubbing my grandma’s arm when she took her last breath and went to be with Jesus. I was very close to her and it was so hard.

After my grandma died, my grandpa got dementia and he was never the same after she died. He struggled for the rest of his life. He went to be with Jesus on my mom’s birthday in 2014, just a year and a couple of months after my grandma died. I was also very close to my grandpa and was holding his hand when God called him Home.

It was such a privilege to be with these 3 people, who mean so much to me, as they went to Heaven. I have a lot to share about the day each of one of them died and how I felt God’s presence like never before on those days.

God is so good and faithful and never leaves us!

I love these verses

“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.” 2 Corinthians 4:16-18

“So you have sorrow now, but I will see you again and you will rejoice, and NO ONE will take away your joy.” John 16:22

Saturday, July 11, 2015

Walking each other Home!

I saw a quote saying "we're all just walking each other Home". I love that. When you walk someone home, you're going out of your way to help someone. To defend them if needed. To get them to their destination in the best way possible. You're taking a journey with their Home in your mind at all times. You're doing everything unselfishly. Isn't this how we're supposed to love each other? We're all on this journey to our Eternal Home in Heaven and we need to help walk each other Home. That means defending them, protecting them, guiding them with Heaven in our thoughts all the time because that promise, the promise of no more pain, sickness, death, tears, will help us no matter how long, difficult, and mountainous the journey is. As people get closer to our Home, we should become more attentive because we'll soon be saying "see you later" as they finally reach our Home in Heaven! I hope we learn better each day on how to walk each other Home through this life. I think it will change how we treat others on this journey! Each day, we get closer to Home. 

Saturday, May 30, 2015

"Jesus Draw Me Ever Nearer"

"Jesus draw me ever nearer
As I labor through the storm.
You have called me to this passage,
and I'll follow, though I'm worn.

May this journey bring a blessing,
May I rise on wings of faith;
And at the end of my heart's testing,
With Your likeness let me wake.

Jesus guide me through the tempest;
Keep my spirit staid and sure.
When the midnight meets the morning,
Let me love You even more

Let the treasures of the trial
Form within me as I go -
And at the end of this long passage,
Let me leave them at Your throne."

I love this song because it reminds me that God will get us through anything if we draw near to Him. James 4:8 says, "Draw near to God and He will draw near to you." It reminds me that He will give us rest that only He can provide when we're so worn from the journey. It reminds me that there WILL be blessings in our trials. I love the line that says "may this journey bring a blessing". I have felt that way throughout my entire sickness. If this 8 year storm that I've been in brings just ONE person to know Jesus, then it is worth all the suffering, the pain, the tears, it's worth it all. If my story brings awareness and helps prevent just ONE person from getting diseases from tick bites, then it is worth it all. Even though this journey has brought lots of pain, it's brought a lot of blessings. Jesus has and will continue to guide me through the tempest, He has and will keep my spirit staid and sure. I pray that when the midnight meets the morning, that I will love Him even more. And when this journey is over, when I am in the presence of our King, there will ONLY be blessings. Only JOY. Only PEACE. Only GRACE. Only His LOVE, for all eternity. That makes the journey worth it. No matter how bad or long the storm is, we KNOW that it will be worth it. 

"Yet what we suffer now is nothing compared to the glory He will reveal to us later." Romans 8:18

"No, despite all these things, overwhelming victory is ours through Christ, who loved usAnd I am convinced that nothing can ever separate us from God's love. Neither death nor life, neither angels nor demons, neither our fears for today nor our worries about tomorrow--not even the powers of hell can separate us from God's love. Neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord." Romans 8:37-39