Saturday, December 3, 2011

3 Years

This is probably the longest post I've ever written. Sorry it's so long.

3 years ago today I was diagnosed with Late Stage (or Stage 3, or Chronic) Lyme Disease in Reno, Nevada. I began treatments and since then have been fighting this disease.

Since December 3rd, 2008, I have spent a total 6 months in Reno, Nevada while receiving treatments. The longest consecutive time that I have spent there is 2 months, the shortest time is 2 weeks.
    Last year and the year before on this day I made videos showing what each year had been like. This year I am just going to tell about it instead of making a video. If you haven't seen the videos, they are posted at the top of my blog under the header.

    My video last year talked about everything up to December 3rd, 2010.

    On December 4th of last year, I was admitted to Mercy Hospital because of severe abdominal pain. The pain started in November and I had made several ER trips since then. I was told that I had an ovarian cyst, but that my appendix was fine. I had just had my gallbladder out 3 months before.

    So I spent Saturday Dec. 4th through Monday in Mercy Hospital for pain control while awaiting exploratory surgery.
    My room in Mercy Hospital

    I was discharged Monday afternoon and went to the surgeon (obgyn) first thing Tuesday morning. The doctor came in and said surgery will be at 5pm that day.

    So on December 7th, we headed to another hospital for surgery.

    My brother, nurse, and I before surgery(this nurse was actually my nurse again for my most recent abdominal surgery! She was great!)

    On the way to the OR. Cute outfit huh? Probably the one of the most expensive outfits ever!

    Surgery started at 5pm and lasted a little over an hour. My surgeon went to talk to my parents afterwards and was shocked with what he found. I had a cyst the size of an orange, my abdomen was filled with blood because of another cyst that had ruptured, my appendix was huge and infected even though tests said it was normal, and I had a ton of endometriosis. The surgeon said that we are very lucky that we did surgery then, because my appendix was going to rupture at anytime. I was able to go home a few hours after surgery.

    A couple weeks after surgery I got a respiratory virus and went to the ER because the pain got so much worse, probably from all the coughing.

    A few days later my youth group surprised me and came carolling at my house! It made me feel so special. I'm so blessed.

    Recovery from surgery took about 5 weeks but was easier than my gallbladder surgery which was just 3 months earlier. I had 7 incisions on my abdomen from both surgeries.

    I was doing great until I got another big cyst at the end of January. I was in the ER twice in one week.

    I went to the ER again on February 10th for abdominal pain from another cyst.

    My youth group had a prayer lock-in on February 25-26. Our church was doing 24 hours of prayer and the youth group took the middle of the night shifts. For 24 hours, at least 1 person from our church was praying! I turned 18 at midnight, and they threw me a surprise party! My family was there too!

    This was after all the streamers and balloons were taken down.

    I also got to go out to eat with lots of my friends for my birthday!

    On March 8th, my mom and I flew to Reno, Nevada to the clinic. We only bought one way tickets since we didn't know how long I would have to be there. 

    The first day of treatments

    Grayson and I. Grayson and his mom were at the clinic the whole time we were. Both of us had to stay at the clinic until late at night because we needed to be monitored or given more medicine to counteract reactions.

    We were in Reno from March 8th to May 7th. Two months. During that time I went to the ER twice. I was not myself most of the time we were at the clinic because of all the pain medicine that I was having to be on. Those 2 months were some of the hardest times. We couldn't treat the Lyme because anything we did would cause the abdominal pain to get worse. Even with the IV and oral pain medicine I was still in a lot of pain from the cysts and trauma my abdomen had gone through. With 2 abdominal surgeries just 3 months apart, plus all of the cysts that had grown and ruptured, my abdomen was so inflamed and messed up. 

    After being in Reno for 2 months, my doctor said I needed rest. I got to go home but was on strict bed rest. A few days later the abdominal pain got so bad that I had to go to ER again. That was on Wednesday, May 11th. On Friday, all my muscles locked up and I was disfigured. It was so scary. We rushed to my primary care doctor but they immediately sent me to the ER. In the ER they immediately knew what was wrong. It was a severe allergic reaction to a muscle relaxer that they gave me in the ER on Wednesday. They started an IV and gave me Benedryl and Ativan while I was in the waiting room. I actually never went to a room. We couldn't believe how fast the medicine stopped the reaction. After 2 doses I was able to go home. The allergic reaction was called Dystonia. Here is what Wikipedia says about it. "Dystonia is a neurological movement disorder, in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures". It was very scary and painful.

    At home I was on Benedryl around the clock, but the reaction kept coming back. I was in the ER Saturday and Sunday. So I had gone to the ER Wednesday for the pain, then the allergic reaction caused me to be in the ER Friday, Saturday, and Sunday. The hospital didn't know what to do since the reaction wouldn't stay away. So they put me on a Parkinson's medicine..along with the around the clock Benedryl, Ativan, and my normal medicines which include a medicine used for sleep and pain that actually an old anti-depressant. I'm pretty sure the ER was tired of us coming back and they didn't know why the reaction was not staying away. So they pretty much overdosed me on all of the medicines to try and get the reaction to stop. I guess usually the reactions don't last that long...but you know how I love to be different and go to the hospital! Just kidding. 

    I think we got home from the ER late Sunday night. I don't remember Saturday through Monday because of all the medicine. On Tuesday, I started having what looked like seizures. My dad ran and got a nurse that lives across the street from us. She told us to go to the hospital immediately. After going to the ER on Wednesday, Friday, Saturday, and Sunday, we really didn't want to go again. But we knew this was more serious. I do remember when the nurse came over on Tuesday and I remember getting in the car and going to the hospital while I was shaking, but I don't remember much after that. 

    I'm told that when we got to the hospital I was very, very sick. I was still having seizure like activity, my heart rate was 140-160, my eyes were dilated and weren't responding to light, I had a high fever, my body stopped producing fluids (as in, I couldn't cry or sweat which caused my fever to be high). I would try to cry because I was hurting so much but tears wouldn't come out. I know I had a brain MRI in the ER to rule out anything there. They called in a neurologist to look at me. They finally figured out it was an anticholinergic toxicity or shock. Aka, I was over dosed and all the medicines interacted badly. And yes, the ER should have looked at all my medicines before putting me on so much. 

    I was then taken to the ICU. It took 6 hours for the doctors to stop the seizures. In the ICU I was given a lot of IV fluid to try and flush everything out. I was on Valium and Dilauded too. The Valium was to help stop the shaking and the Dilauded was to help my pain, and relax me too. It helped until it started to wear off and then it would come back but was pretty easily controlled. I was very confused the whole time in the ICU. I would ask where I was and why I was in the ICU every few minutes. I would cry but no tears would come. I was also very funny apparently. These are a few things that happened. I hope I remember them correctly. I only know what people have told me.
    • My parents would take my phone away because I would be texting seriously everyone in my phone. But somehow when they left the room I would get it back. I sent some weird embarrassing. But everyone I texted knew I was in the ICU and a little drugged...
    • I thought I was in Disney World and that the bathroom was the Rainforest Cafe. How that happens I really don't know! 
    • I was like a 2 year old. I would go from laughing and thinking I was in Disney World to a very confused and angry person. I had to be talked to as if I was 2 because I was just so crazy from all the medicines. 
    • In the ICU when the nurses change shifts, they kick all the visitors out. That means that I was alone. On Valium and Dilauded. All the other patients in the ICU were intubated and sedated. I guess I didn't want to be there anymore so I decided to leave. I took off all my monitors which was a lot. I had heart monitors, blood pressure monitors, and oxygen monitors and IVs. I then walked out of my room. I don't think I got far, but yes, I tried to run out of the ICU. 
    • I would be talking and then just fall asleep. Then when I would wake up I would sit up real fast and act like I hadn't been asleep. Apparently I just talked and talked and didn't make sense. 
    • The ICU doctors and nurses didn't want me out of bed because of all the medicine I was on. That meant they wanted me to use a bed pan. I was having none of that. They didn't believe my parents that I can walk just fine even with all that medicine. The nurses and doctors were SHOCKED when they saw that I could walk with no problems even with all that medicine. 
    I was in the ICU from Tuesday until Thursday afternoon, and then I got moved to step down unit. I was there until Friday and then I got to go home. The neurologist was monitoring me the whole time I was in the hospital. The interesting thing is, we never got a bill from the ICU. I think the ER doctors realized it was their fault that I had the reaction so they were probably scared that we would sue them.

    That next Sunday was Senior night at church. The senior guys that are graduating from high school lead worship, the elders give each of us a Bible, and we get to set up tables with things about us for a reception after church. I got to go! I was just in the ICU and released from the hospital Friday, and I got to go to church Sunday night! I was very weak, but I made it. I'm so glad I got to go. 

    My youth ministers

    The next few weeks were great! I finished high school (online), enrolled in college, did a news interview about Lyme Disease, and took the ACT. I went to church camp with the youth group for a couple days. 

    Some of our good friends were visiting and came over to house in July. 

    Me, Landon, and Izabela

    Bart was our adopted college student when he was in college and Landon and I were in he and Tamika's wedding. They have two beautiful kids and at the time had one on the way. When they came over, they wanted to tell us the baby's name. They wanted to name her Victoria Hope after me. I never thought that someone would ever be named after me! It's such a privilege. Baby V was born this fall. She is beautiful just like her family. 

    The next day, July 10th, my brother wanted to be baptized! He had been thinking about it for a while and was ready to give his life to Christ. 
    Taking his confession
    My grandpa leading a prayer before the baptism
    My dad baptized him

    After the baptism

    That same afternoon was my graduation reception at church. It was a perfect day! I'm so blessed to have so many people who love me and support me.
    At my reception
    My family and I went to Disney World at the beginning of August! We had a great time. 
    The view outside of our hotel room

    After we got back from our trip I started physical therapy. However, I had to stop that because of more cyst problems. 

    On Saturday, August 13th I had to go to ER. It was another cyst. I had so much to do that week! I was moving to the dorms a week from then. Well just 3 days after the first ER trip, I went again that Wednesday. My cyst had ruptured. 

    I was still able to move into the dorms at Oklahoma Christian University on Saturday August 20th! I didn't plan to go to the ER twice the week that I moved in, but it all ended okay. 

    My dorm room
    I'm only taking one class a day this semester. Going to school wasn't as easy as I thought it would be. I was already missing classes because of my health. The abdominal pain was so bad. We decided to do another exploratory surgery. 

    On Monday, September 19th, I was wheeled into the OR for my 3rd abdominal surgery in a year. This time my surgeon found more endometriosis and took it out. 
    I was at home recovering for 3 weeks. Catching up from missing that much school was challenging. 

    On October 6th I celebrated the 2 year anniversary with my port! My port has been great and has allowed us to do IVs at home!

    We had trick or treating in the dorms on Halloween! We decorated our doors and the faculty, staff, and alumni brought their kids to trick or treat! 
    Rock paper scissors

    On November 2nd I went to my primary care doctor because I was feeling terrible. My parents and brother were out of the country. My doctor said I had a virus like the flu and needed fluids. My grandparents took me to 2 after hours clinics to see if they could do fluids. They couldn't, and I was feeling worse so we went to the ER. I got 2 liters of fluid and lots of nausea and pain medicine. I was out of school for 2 weeks. 
    The view from my room in the ER

    During that ER trip I received the worst IV I have ever had. How impressive is that bruise?! It was all colors of the rainbow at one point.

    In the past couple weeks I have had 2 allergic reactions. One was from an anti-inflamatory and the other was from MSG in some food. The MSG reaction happened on Thanksgiving and took a few days to calm down. 

    Unfortunately I have missed 5 or so weeks of school this semester. I have had to stay at home for a total of 5 or 6 weeks. School has been great for me, but also a huge challenge. Trying to go to class and all the social activities is hard when you don't feel well. But I am so thankful to be able to go to school again, even if it is only one class a day. Missing almost 3 years of school is a lot. It's taken a while to adjust to going to school again while battling health challenges. 

    This past year has been hard. Honestly, the word that comes to mind when I think about the past year is pain. I don't remember a lot of the year because of all the pain medicine I have had to be on. So many days were spent just trying to get through the day without going to the ER because of all the pain. I was in the hospital when I should have been walking with my class at graduation. And even today I am in a lot of joint pain. Today I have a lot of questions about symptoms I'm having. 

    But this year has had so many blessings. I graduated high school after not physically going to school for almost 3 years. I started college. Earlier this year we didn't know if that would even happen. I have met some wonderful people! The article about me in the paper this summer put us in contact with so many people who have Lyme or know someone who does. Just in the past couple of months I got to meet 2 girls that are my age who have Lyme. We have the same problems from Lyme. It's almost creepy how similar we are. It's been great to have them to talk to. 

    So yes, I still have days when I question every thing that is happening. But I know God has plan. 

    "For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future" Jeremiah 29:11

    Sometimes I just don't understand. But I'm not supposed to understand everything. I'm supposed to trust.

    "Trust in the LORD with all your heart
       and lean not on your own understanding;
     in all your ways acknowledge him,
       and he will make your paths straight" Proverbs 3:5-6

    Some days I feel like I can't go on. But God is faithful.

    "I remember my affliction and my wandering,
       the bitterness and the gall.
    20 I well remember them,
       and my soul is downcast within me.
    21 Yet this I call to mind
       and therefore I have hope:

     22 Because of the LORD’s great love we are not consumed,
       for his compassions never fail.
    23 They are new every morning;
       great is your faithfulness. 

    24 I say to myself, “The LORD is my portion;
       therefore I will wait for him.” Lamentations 3:19-24

    "Though the fig tree does not bud
       and there are no grapes on the vines,
    though the olive crop fails
       and the fields produce no food,
    though there are no sheep in the pen
       and no cattle in the stalls,
    18 yet I will rejoice in the LORD,
       I will be joyful in God my Savior.
     19 The Sovereign LORD is my strength;
       he makes my feet like the feet of a deer,
       he enables me to go on the heights." Habakkuk 3:17-19

    "Three times I pleaded with the Lord to take it away from me. 9 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 10 That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong." 2 Corinthians 12:8-10

    I want to thank you all for the comments and support. It means so much to me. Some days I just get on here and read previous comments and it cheers me up! 

    These are a couple of songs that I love. I know I've shared them before but they are so good. 

    Praise You in this Storm by Casting Crowns
    "I was sure by now
    God You would have reached down
    And wiped our tears away
    Stepped in and saved the day
    But once again, I say "Amen", and it's still raining

    As the thunder rolls
    I barely hear Your whisper through the rain
    "I'm with you"
    And as Your mercy falls
    I raise my hands and praise the God who gives
    And takes away

    And I'll praise You in this storm
    And I will lift my hands
    For You are who You are
    No matter where I am
    And every tear I've cried
    You hold in Your hand
    You never left my side
    And though my heart is torn
    I will praise You in this storm"

    Carry Me by Audrey Assad
    "Pain is a forest we all get lost in
    Between the branches hope can be so hard to see
    And in the darkness we've all got questions
    We're all just trying to make sense out of suffering but

    You say I am blessed because of this
    So, I choose to believe
    As I carry this cross, You'll carry me

    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"

    So, "My flesh and my heart may fail, but GOD is the strength of my heart and my portion forever." Psalm 73:26

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