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!

https://www.facebook.com/pages/Finding-God-in-the-Midst-of-Your-Storm-Victorias-Fight-With-Lyme-Disease/823182307797182


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

Friday, May 29, 2015

Bottle of Tears

One of my friends that has Lyme started this great ministry called Bottle of Tears. It's based on Psalm 56:8 which says, "You keep track of all my sorrows. You have collected all my tears in your bottle. You have recorded each one in your book". When you go to the website (http://www.bottleoftears.com), you pick out a one of a kind vintage bottle in whatever size and color you want and then Psalm 56:8 is rolled up inside and you can add a personal message! You can also pick several verses that can be framed. They also have tear drop earrings and rings along with some other things!

I wanted to get my mom a bottle around the time of her birthday, which was also the 1 year anniversary of my grandpa (her dad) dying. He died on her birthday last year, so I knew this year would be hard so I wanted to send her this. I picked a medium sized turquoise bottle! She loved it! 

Then last week, someone sent me one!!! It is turquoise too and I LOVE it! It came just after I had gotten out of the hospital after being admitted 3 times in 11 days! I had just had my 5th PICC line placed, then a 5 hour heart procedure, then they shocked my heart, and then the next morning I had surgery to put in a permanent heart monitor! It really made my day when it came! 


This is how it comes wrapped and it's so cute! 

Here is the verse that's wrapped up inside the bottles.

 They also came with this verse! Thank you so much to the sweet person who sent this to me! I love it so much!!

Go to http://www.bottleoftears.com to order one for yourself or someone else! They make great gifts and are very inexpensive! 

Monday, May 25, 2015

Update on my heart, 3 hospitalizations, and many procedures

God has carried me through so much the past few weeks. He is so good and faithful and promises to never leave us! I know He's been carrying me through it all.

Here's an update on what's going on with me. I'll give a quick update and then a long one. Quick update: Been admitted to the hospital 3 times in 10 days, got my 4th and 5th PICC line, had a 5 hour heart procedure, then they shocked my heart, then I had a permanent heart monitor placed inside my chest. I am okay!

Long update: As I've mentioned before, ever since I got sick, I've had trouble with my heart. Nothing life threatening, but very inconvenient and uncomfortable. Ever since I've gotten sick I've had tachycardia. That means that my heart rate is a lot faster than it should be, even when I'm resting and laying down. I've seen a couple cardiologists and they've just said it's tachycardia and they put me on beta blockers to try and lower my heart rate and they haven't ever worked really well and sometimes cause more problems from the side effects. The cardiologists I've seen in the past haven't tried to find the cause of the tachycardia, they've just thrown medicine at me.

I've had several EEGs in the past year because of the seizures I've had. The EEGs detect electrical activity in your brain. On my EEG, it showed cardiac involvement. So something in my brain is being affected by my heart. This could mean that my heart is contributing to or causing the passing out episodes I have, and the seizures. After getting those results from the EEG, several doctors recommended that I go see a special cardiologist that specializes in Cardiac Electrophysiology and Pacing. They look at the electrical part of the heart and how that works.

I saw this special cardiologist almost 4 weeks ago and it was just what I needed! Praise God for bringing me to this doctor. Tachycardia is an electrical problem, so I don't know why I haven't seen a doctor like this sooner, but I'm here now! He spent lots of time with me and said what he thinks my real diagnosis is, even before all the testing. It turns out he was correct, that's how good he is. He had me wear a heart monitor for a week to see what my heart does. It confirmed that even on beta blockers, my heart rate is still way too high. One day I was laying on the couch and my heart rate shot up to 179bpm and the heart monitor company called my cardiologist's nurse to tell her and she called me to make sure I was okay. I was fine, besides the dizziness, chest pain, and being short of breath but that's normal for me since I started having heart problems. My heart rate goes higher than it should when I stand up also which makes standing for long periods of time very difficult for me. I have also developed a huge heat intolerance that seems to be related to my heart.

My new cardiologist ordered a Tilt Table Test and I did that 3 weeks ago. For this test, they strap you to a table, take your vitals laying flat, then they tilt the table up so that you're in a standing up position. Here is a good picture of it when it's tilted up.

The test lasts about an hour and you're in the standing position the whole time. The goal is to reproduce symptoms such as passing out, fast heart rate, and whatever other symptoms you're experiencing. My heart went up to 180bpm during the test and I was just standing there. I came so close to passing out but never actually did. This test also tests for POTS, which we have suspected that I've had since I got sick. POTS stands for Postural orthostatic tachycardia syndrome which is an autonomic nervous system dysfunction. The autonomic nervous system controls everything you don't consciously do such as blood flow, organ function, digestion, heart rate, and more. When I was fixing to do the tilt table test, we told the tech doing the test that we thought I had POTS and he said he's been doing this test for 12 years and has only seen 3 or 4 real cases of POTS so he said he didn't think I had it. After the test, he said, yep you have POTS. 

The tilt table test showed us so much and after that my cardiologist gave us two options. It showed I have an arrhythmia that no one else had caught. The first option was to have me admitted to the hospital to be started on a new heart medicine for arrhythmias. I would be there for at least 3 days because they have to monitor you closely when you start the medicine. The next option was a procedure where they go into your heart to try and find the location of the arrhythmia and if they do, they would do an ablation which destroys that part that's causing the problem. I wanted to do the procedure because I wanted that chance of having it totally fixed and didn't want to add another medicine since I'm already on beta blockers, but because of scheduling issues, I couldn't have the procedure for over a month.

So Wednesday, May 6th, I was admitted to the heart hospital at 6am to start the medicine! They tried so many times to get an IV and couldn't, so they called the PICC line team and they put in my 4th PICC line. I had to stay in the pre-op and post-op area until a bed opened up upstairs so I was in that area until about 4pm that day. I had the BEST nurse in the pre and post op area. She has the arrhythmia and tachycardia that I have and was so sweet. She took such great care of me! I got my first dose of the medicine at 8am and soon got a horrible headache, got dizzy, and just felt weird. My doctors said I could stop the medicine but I wanted to keep trying it. I got another dose of the medicine that night and the headache got worse. Still, I wanted to keep going. Thursday my head kept getting worse with each dose despite being on 4 pain medicines. Again they asked if I wanted to stop the medicine. I said no. I wanted to give it a chance. Friday came and I decided not to get my morning dose because I was supposed to go home that day and couldn't go home with that bad of a headache constantly, so my doctor decided to take me off of the medicine since I was having bad side effects. I got to go home Friday evening and was upset that I couldn't tolerate the medicine. They said that just happens sometimes and everyone is different. The heart hospital I was in is AMAZING. Every time I called the nurse, she would be in my room in under a minute. My cardiologist and his PA are also incredible. When they were trying to get my headache under control and trying to figure out what medicines to use, the PA came to see me about 5 times in 4 hours or something like that. Also, the nurse I had in the pre and post-op area was so touched by my story, that on her day off, she tracked me down and called my hospital room just to see how I was doing! It almost made cry to think how much she cared! I gave her my blog, so if you're reading this, please know how much you blessed my life! God is using your caring spirit to help so many people! I want to stay in contact! I also had visitors each day and I am so thankful for those people! Here are some pictures from that 3 day hospital stay.

It rained so much while I was in the hospital and we saw these rainbows from my hospital room! It reminded me that God was with me and His promises never fail! 

Kind of hard to see but it's a double rainbow!

My 4th PICC line. 

One of my friends came for a late night visit and gave me this beautiful bracelet. It has an anchor, infinity sign, and the word hope! 
"We have this hope as an anchor for the soul, firm and secure." -Hebrews 6:19

This is how long PICC lines are. This one is tangled up, but imagine this stretched out and it goes from the arm, up through the chest, then down into the heart. It's super long! 


For the 3 days I lived with this icepack on my head for the headaches. It's cute, I know. 

Taking care of my beautiful flowers

My mom loved my look so much that she wanted a picture of my heart monitor necklace and you can also see my PICC line by the crease in my right arm. 

Again, I just looked so good that my mom had to get a picture. I'm holding my arm up to show my PICC line, which adds to the look. Someone called me the flying nun because of my ice pack? Do you agree? 

So I was discharged Friday, May 8th, and was glad to be at home. I had to take my final for my online class when I got home from the hospital because it was due at midnight that night. I just found out recently that I got a B in the class!!!! I'm so proud of that after all that's happened since I started the class!!!

I did well at home and even went to church that Sunday, May 10th, and went out to eat for Mother's Day! Side note- I have the best mom (and dad)! I wouldn't be where I am today without her. I love you mom!!!!

On May 10th, after we got home from church and lunch I was laying on the couch and felt my heart go into a weird rhythm and then I passed out. After, I was fine besides my chest hurting. Later that afternoon, I was outside playing with my dog Charli and felt my heart do that weird rhythm and I passed out again and woke up with more chest pain. My parents decided to take me to the heart hospital ER. When we got there, they were rushing in a 70 year old who had been in cardiac arrest and then the nurse told us he was post arrest which meant that he didn't make it. I silently said a prayer for his family. Then, the guy in the room next to me was getting his heart shocked to get it back into normal rhythm. We heard everything and even though he was sedated, when they shocked him, he yelled out. I had NO idea that a few days later they would do the same to me...I'll explain that later. Things settled down a little in the ER after that. So in the ER, they did all the normal tests and found that my heart rate was high despite the beta blockers I'm on. I was stuck at least 5 times to try for an IV and they couldn't get it so they had 2 special techs come in and do an arterial blood draw which involves taking blood from an artery when they can't get it from the vein. They couldn't even hit the artery with an ultrasound machine, but finally on the 2nd try they got blood. After all my tests the doctor really wanted me to have an IV so someone else came in and finally got a tiny one! It was so frustrating since I had just had my PICC line taken out 2 days before on Friday! 

They gave me medicine in my IV to slow my heart rate down but it didn't work. The ER doc talked to the on call doctor for my cardiologist and they decided to admit me again and my cardiologist would see me first thing in the morning. They got me to my room around 1am Monday morning and they just monitored me and tried to help my chest pain. I had a sweet nurse who decided that at 3 am when she taking blood, that she wanted to talk to me about her private life. A very, very private part of her life. At 3am. And I had just met her at 1am. I tried not to call her the rest of the night except if I had to get up to go the bathroom because I wasn't sure what she wanted to talk about next! She gave me some medicine for my chest pain and thankfully I slept on and off until shift change at 7am. Besides telling me way too much, she was so very sweet! I haven't had a bad nurse or CNA (certified nurse assistant) at this hospital.

My cardiologist came in Monday morning and said he wasn't sure what caused those 2 episodes but that he wanted to start me on a different medicine to help get my heart back into a normal rhythm and lower my heart rate . They planned on having me stay another night to see how I did with the medicine. Then, later that day, my cardiologist came in and said that he would be able to do the heart procedure that Friday instead of the end of June! He was able to move me up! What an answer to our prayers! So instead of starting me on that other anti-arrhythmic medicine, I got to go home Monday night and not stay another night in the hospital! So I came home Monday, May 11th, so that I could have the heart procedure on Friday, May 15th.

The rest of the week I spent getting ready for the procedure. The plan was for me to go home the evening of the procedure. Here's what really happened. This is what I put on Facebook when I woke up Friday morning.

"I got 3 hours of sleep but God is holding me and I'm ready to conquer this procedure on my heart with Him! I have to be at the Heart hospital at 7am and it will start around 9. They expect it to last 4-8 hours. I will be somewhat sedated but awake through it. Please pray for my medical team and that they are able to find the problem and are able to fix it easily with no complications. Please pray for peace for me as my doctor said it would be an uncomfortable procedure. Please also pray for my family as they wait and support me. I believe that God will heal me and guide the doctors to find and fix the problem easily, but even if He has a different plan, I will STILL praise Him because as one of my favorite songs says "the storm may swell, even then it is well, and YOU are good". There is a possibility that they won't be able to fix the arrhythmia, but we're praying that they can! God can do anything! Thank you so much for your prayers and encouragement. It means so much to me and is so uplifting to know I have so many people that care.
"No, in all these things we are MORE than conquerors through HIM who loved us." Romans 8:37
"My flesh and my heart may fail, but GOD is the strength of my heart and my portion forever" Psalm 73:26"


Friday, May 15th, we arrived at the Heart Hospital at 7am for the procedure where they try to get your heart to go into an episode of extreme tachycardia to find where the arrhythmia is, and then if they find it they do an ablation to destroy that part of the heart and stop it from firing.

I made this and it has comforting verses on it and I took it to the hospital with me! I loved being able to show it to the nurses and doctors who took care of me!


When we got the hospital, the nurse who did my vitals and admitted me was the nurse that took care of me during my first hospital stay who has the same arrhythmia that I have! I was so excited to see her again and once again, she took such great care of me! Unfortunately she wasn't my pre and post-op nurse, but that nurse was great too and she had admitted me the first time! Those 2 nurses just switched roles! Both of those nurses decided to not to even try for an IV, but to just call the PICC line team. The lady doing the PICC arrived pretty fast and I decided to do it in my left arm. I've had 3 PICCs in my right arm and 1 in my left so that's why I decided to do my left. They use an ultrasound machine to put in the PICC and it usually only takes about 15 min or so. My mom got to stay in the room if she promised to wear a mask and not get too close! It's a very sterile procedure since the PICC goes into the heart. It's also called a central line. She got the PICC line up to my shoulder and then it wouldn't turn to go down into my heart. She worked on it for over an hour. The anesthesiologist came in and said if it works, just leave it like that since we were already an hour behind schedule for my procedure. It was in such a weird position and when they put medicine in, I could feel it come out of the PICC into my vein in my chest. Here are some PICCtures (get it??) from the procedure to put in the PICC line. None of them are graphic.

Trying to smile while she was putting it in!

 She had me move my head a lot to get the PICC in the right place

Threading it through the vein

Taking an x-ray to see where the PICC was

Here is the finished product. My 5th PICC line

The doctors said the PICC line was okay even though it never went far enough down. They had me wear a bracelet that I've never had to wear before. It was my "blood band". Since they would be working in my heart, they said they had to have blood on standby and I had to wear this bracelet that has a lot of info about what kind of blood I would need. Praise God that I didn't need any blood during the procedure! 


It had lots of stickers on it, I'm guessing to match it to the blood if needed 

After everything was ready, they came to get me. I asked my dad to say a prayer before they took me, so with all the nurses and everyone in the room running around to get things ready, they all stopped when my dad prayed. It was such a sweet prayer. I started to cry during the prayer and I think this was the first procedure that I cried for when they took me from my family. I was so scared after hearing all the risks and having my cardiologist go through the procedure step by step since I would be awake for most of it. But as they rolled me out of the room, I kept saying silently "God be with me" and I had His peace.
Getting me ready


They took me to the OR around 10am, an hour late. They gave my parents a pager and said that the nurse would page them every hour and update them on what was going on. The procedure was supposed to be 4-8 hours long. We got into the OR and they had this amazing screen! It was the length of the operating table and very tall too. It was parallel to the table. I asked them about it and they said it's the only one in the hospital, and there are only a couple in the whole state. One guy said it was more expensive than his house! I'm not sure if he was kidding or not...They had me move over to the table from my bed. The anesthesiologist gave me something to help me relax while they hooked me up to all the monitors and got things ready. Then they totally sedated me while they got the wires in my heart and put other not fun things in. I'm so thankful I was asleep for that! It took about an hour from when they took me to the OR to get everything in place, put me to sleep and put the wires in my heart and other things, and then wake me up. So we were already an hour in when I woke up. I woke up to find that my hands were in restraints so that I wouldn't move. Before the procedure my doctor had said that it would be very uncomfortable for me during the procedure and that they would give me pain medicine and more medicine to help me relax if I needed it while I was awake, but those meds lower the heart rate the their goal is to make your heart go into an episode to see where the arrhythmia is coming from so if they give you more medicine, then they have to do more to stimulate your heart. So my goal was to make it through with no extra pain medicine or sedation. He said sometimes they have to put people back to sleep because it's too uncomfortable. Waking up was very uncomfortable and painful and like I said my hands were tied down so that made me feel a little claustrophobic. I panicked for minute when I realized I could feel the wires in my heart and the uncomfortable catheter. But the anesthesiologist, nurses, and my cardiologist talked to me to help me relax and soon I did. I prayed that God would would give me peace and prayed throughout the whole thing. I was able to talk to everyone in the OR during the procedure and that helped distract me. Once I was awake, they started giving me medicine in my IV to increase my heart rate. The medicine was adrenaline or something like it. He would have the nurse slowly increase the dose as my heart rate went up. He would move the wires in my heart and that's one of the things that was on the big screen. There was a ton of stuff on the screen but the biggest thing was a continuous x-ray of my chest to see where the wires were. On the screen my heart would turn different colors as he did different things to it. So he made my heart rate go up and it got to 250 beats per minute. That was really, really uncomfortable. It would also skip beats and just go crazy. After that, he had the nurse turn the medicine off to let me rest. Then he would start the medicine back up and my heart rate would go really high again. After about 3-4 hours of doing this, he finally found the EXACT location of the arrhythmia! I was so grateful! But then I could tell that something was wrong. He asked one of the techs to do something, and I felt a nerve on my right side move and my diaphragm on that side moved in and out. He had them do that several times. It didn't feel good! He then told me that the arrhythmia is exactly where the nerve to my diaphragm is. He could not do the ablation and fix it because it would damage the nerve to my diaphragm and I wouldn't be able to breathe. I was so disappointed. Our prayer was for them to be able to find the problem and fix it easily. God did answer our prayers, just in a different way. They found the problem, but couldn't fix it. So that is a blessing that they found the location! I made it the WHOLE time without any extra pain medicine or sedation! Only God! It was so uncomfortable and hard to lay there for 4 hours without any other medicines, but God got me through it and I'm proud of that!

After he realized he couldn't fix the arrhythmia, he told me he was going to put me back to sleep and shock my heart. I said wait a second! We never ever talked about this, I didn't know this was a possibility! I was so scared. I told him to call my parents and let them know. I don't know how that would have helped anything, but I wanted them to know. So the anesthesiologist put me back to sleep and they shocked my heart (Cardioversion) to slow it down and get it back into a normal rhythm. This was just a temporary fix. This is what my mom posted on Facebook after talking to the doctor.

Victoria did great through the 5-hour EP study; so proud of her! Being awake with wires in my heart is not on my bucket list, but she conquered it!! The not so good news is that the doc couldn't perform the heart ablation due to Victoria's arrhythmia being located too close to a nerve that runs to the diaphragm. So the docs decided to put her under and shock her heart. The heart shock will hold for a while but not long enough to help long-term. So it's back to the drawing table and back to trying another med. Thank you for your prayers! We will keep on keeping on!

I woke up crying (I always do after anesthesia). I knew they didn't fix the arrhythmia, I was in pain, and was just upset at the whole situation. When I got to my post-op room from the procedure, there were beautiful flowers waiting for me!

They were from my brother! That made me cry even more! It was so sweet, and there was a card and he had written something. He really is the best, most thoughtful brother. Look how beautiful they are! 

I had to be on bedrest after the procedure for 4 hours but it ended up being about 7 hours of bedrest because of something that happened that required I not move for longer. My doctor came in to see me after the procedure and we discussed the next step. There are other procedures we can do where the nerve to my diaphragm would be moved while they do the ablation and then put back in place. Unfortunately these procedures are more invasive and they're also more risky. They would have to be done at a different hospital too. We don't have a plan yet on what procedures to pursue next to fix the arrhythmia but my cardiologist is looking around and we will look around the country too at different procedures. We've got to let me heal from all of this first though. My cardiologist then mentioned putting in a permanent heart monitor so that they could always see what my heart does without me having to wear those annoying external heart monitors and this one would last 3 years. So I agreed to that. He then joked that we should just put it in right then. Yeah, cause I hadn't been through enough that day! Since I was staying the night in the hospital, he said he could do the minor surgery the next day (Saturday) to put in the heart monitor. I said okay. He left and they got my room upstairs ready and I had the best 3 nurses taking care of me post-up. One stayed past her shift because she just wanted to make sure I was okay. They had to constantly check the 2 sites on my legs where they went into my heart to make sure they weren't bleeding a lot. They also cleaned me up and helped calm me down. I was really upset, but a lot of the crying was the anesthesia and pain. Also, let's be honest. Having a catheter in you from 10am to 10pm is just not pleasant. I had to have it because of the procedure and then the best rest after since I couldn't move.

They then took me upstairs to my room and it was a great room! Yes, this was my 3rd admission in 10 days and I knew what rooms were good and which ones weren't. I had lots of visitors when I got to my room and that made my day and distracted me from everything! 
Here is what my room looked like! It was right by the nurses station which I like because you can eavesdrop on lots of interesting things. 






At 10pm that night, I was able to get up and was off bedrest! I took a lap around the floor and then settled in for the night. They started me on a new medicine for my heart that is to help keep it in a normal rhythm. So now I'm on a beta blocker to lower to my heart rate, which he doubled the dose of that, and then the new medicine to help the rhythm of my heart. I slept well that night besides the normal hospital things that wake you up. At 7:30am Saturday, my day nurse came in and said they would be coming to get me soon for the procedure to put in the heart monitor. I had the best nurse that day! My doctor came to my room and talked to me about the procedure. I told my nurse that I was nervous about the procedure because they usually use 2 medicines to sedate for these procedures when it's not general anesthesia, and I can't have 1 of the medicines and the other medicine doesn't work on me. She said she would be waiting for me after the procedure to see how I did. Two OR nurses came to to my room to get me and they took me down around 9am. It was a maze to get to the OR and a lot of the hallways were dark because it was a Saturday. On the way to the OR, they told me the medicines they would be giving me and I told them that those medicines don't really do anything to me. It wasn't general anesthesia but they are supposed to give you enough medicine so that most people fall asleep from the meds.  Again, I told them those medicines don't work and I couldn't have 1 of them. I don't think they believed me. They got all the drapes ready and my face had to have a drape over it since they were putting the monitor in my chest by my heart. They went ahead and gave me the sedation and pain medicine and I was still wide awake. My cardiologist was fixing to start when he realized he needed something else. By the time they got whatever he needed, the pain medicine had worn off and I was still wide awake. He started and made a tiny incision and then to get the heart monitor into my chest, he put all his weight on my chest which left me unable to breathe because he was pushing so hard. I was in tears and they had already maxed me out on all the medicines so they couldn't give me anymore, so I just had to lay there and take it. It was horrible. The nurses had to hold my body down because I was shaking from the pain. The procedure only took about 10 minutes, but it was excruciating.

They took me back to my room around 10:15am and my nurse was waiting for me, just like she had promised. The OR nurses explained that everything went well, but that I was in a lot of pain and was totally awake through it all. My nurse gave me my morning medicines (I couldn't eat or drink before the surgery so I couldn't have my normal medicines) and then medicines for the pain.

This is what the heart monitor looks like. I can feel it inside me which is kinda weird. This can stay in me for 3 years if needed. I have to carry a card with me at all times that says that I have a heart monitor
 I have to have this blue device with me at all times because if I have symptoms or my heard does certain things, I press a button and hold it up to the monitor in my chest and it sends my heart rhythm to the doctor! It beeps once it connects to the monitor in me! Pretty amazing. 


My cardiologist came to check on me several times because my incision was bleeding at a steady rate. It slowed down later in the day. He also just wanted to see how I was doing since it was traumatic for me. I realize that this doesn't compare to things that other people go through, but it was still painful and scary to be wide awake and all the medicines had worn off by the time they started the procedure. He said I could go home after I ate something and rested for a while!

I rested in my room but never went to sleep because I was so uncomfortable. My nurse kept checking on me and giving me medicines as needed. I had a couple of visitors which was great and helped cheer me up and distract me from everything. I wasn't hungry but knew I needed to eat before I could go home. I ordered lunch around 1:30pm and didn't eat much, but made it look like I did so I could go home! They had the best angel food cake with strawberries on it and I got that at every meal! So I ate that and some yogurt and pasta. Yes, I realized that getting cake at every meal isn't the healthiest option, but I was barely eating during all my hospital stays and that's all that sounded good!

I got to go home later that afternoon and have been home ever since! Recovery has been more challenging than I planned for since I ended up having multiple procedures instead of what was just supposed to be the one procedure to try and fix the arrhythmia. My cardiologist said it would take at least a week to recover from just the 1st heart procedure, and then to add the cardioversion and heart monitor surgery, that is a lot for me to go through in such a short time. It all happened in less than 24 hours.

One day last week I was lying on the couch with my blanket and noticed that my arm was on my favorite verse. I looked down and saw my hospital bracelets and realized that they remind me of how far God has brought me. It reminds me of all that I've been through, and how God has gotten me through it all by giving me strength, hope, peace, perseverance, and grace. I think that's why I keep all of my hospital bracelets. I look at them and see physical proof of God carrying me through this illness, through the pain, through the tears, through it all, never leaving me. I have hundreds of hospital bracelets from 7-8 years of this and each one represents a difficult time. But more than that, each one reminds me what I've overcome with God! He's never left me! I was also wearing this bracelet that I mentioned earlier that reminds me of the verse Hebrews 6:19- "We have this hope as an anchor for the soul, firm and secure". God is my anchor, hope is my anchor, grace is my anchor, peace is my anchor. I'm blessed.



So, to recap, I was admitted to the hospital 3 times in 10 days. The first time was for 3 days to be started on a new medicine to get and keep my heart in a normal rhythm. Unfortunately the side effects were too much and I wasn't able to stay on the medicine. 2 days later I was in the ER and was admitted again for high heart rate and passing out episodes. I was going to stay 2 nights to try another new heart medicine, but my cardiologist was able to move my procedure up instead of having to wait until the end of June. He had an opening and wanted to try and get my heart fixed. So I was only in the hospital for 1 night and about 24 hours and got to go home without starting the new medicine! 4 days later on Friday, May 15th, I was admitted for what was supposed to be the one procedure to fix my heart. They put in my 5th PICC line but worked on it for over an hour and never got it in the right spot but it worked and was ok. I then had the 5 hour heart procedure to try and find and fix the arrhythmia. To find the location of the arrhythmia, they made my heart rate go up to 250bpm and I had to be awake for about 4 hours of the 5 hour procedure. They found the exact location of the arrhythmia, but they were unable to fix it because of it's location. It's right where the nerve to my diaphragm is and fixing the arrhythmia would have caused damage to my diaphragm. They then decided to put me back to sleep and shock my heart to slow it down and get it back into a normal rhythm. I stayed that night in the hospital and the next morning, they surgically placed a heart monitor in my chest by my heart. I was able to go home later that day!

It has been a lot to go through. I'm doing okay though. I'm dealing with the reality that they weren't able to fix my heart and now we're looking at more medicines and invasive and risky procedures. I just want my heart fixed because it is causing a lot of problems. I'm not frustrated at God, mad at God, or blame God for any of this. I'm just mad at the situation. 7 years of this gets exhausting. But my hope, peace, endurance, grace, and strength all come from God! He had never left me and is using this for good. Your prayers and kind words have also carried me! I WILL praise Him for all He's done and for His promises that anchor me in the storm. 
"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"


Someone (city official) said something to me a couple of days ago that caught me off guard. He came to my house for something and asked about my hospital bracelets so I explained what was going on and that I had Lyme disease and he said "you're one of the lucky ones. You're still fighting and you're not dead". So yes, I am blessed to be alive today, blessed to feel pain because it means I'm living, blessed to be weak because it means I know what it is to be strong. I'm blessed. God has a plan for me. 

These are lyrics from 2 songs that are especially comforting right now. 

"I have unanswered prayers
I have trouble I wish wasn't there
And I have asked a thousand ways
That You would take my pain away

I am trying to understand
How to walk this weary land
Make straight the paths that crooked lie
Oh Lord, before these feet of mine
When my world is shaking, Heaven stands
When my heart is breaking
I never leave YOUR hands"

"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"

Thank you so much for your prayers, visits, comments, texts, cards, and encouragement. It really does lift my spirit and make a huge difference! Please don't stop! 
I don't know what's next for me, but I press on. Trusting God. Thanking God.