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

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