What most people don't know is that a week before the serious car accident I was in, I was in my first fender bender car accident. That accident scared me to death. I was shaking for hours afterwards. I think I merely got in that accident to prepare me for the accident that was to follow.
The detail are still a bit hazy, as I was looking down, and Molly was completely out of it because of her head injury. But, I will do my best to tell the story.
Molly and I had found a ride with a family of 7 (5 kids), a widow of a BYU professor, and another BYU student over Thanksgiving break from Provo to Las Vegas in a 12-passenger van. My sister Katie, brother-in-law Connor, and their daughter Emmeline live on base in Vegas. My parents flew from DC to Vegas to spend Thanksgiving there as well. The drive down was awesome. I slept some, and played with the kids some. Molly got wrapped into drawing pictures of everything and anything the kids could think of. Poor girl. When we arrived in Vegas, Katie and Emmeline picked us up at a restaurant right off the freeway. We spent the week/end making and eating yummy food, playing with Emmeline, and just hanging out with family. I was pretty glad to have a break from school-- even though I did plenty of school work while I was there. When the week was over, we got our stuff packed up and met back at the same spot to get picked up. Molly and I slept some on the way back, especially since it was approaching night time/darkness where we were. Molly also drew more and more and more as we watched movies.
When we got into the area of Scipio, Utah we stopped at a rest stop for gas and to stretch our legs. It was around 5 or 6. When the car was filled up, and all of us were back, we piled in the car and made our way back towards Provo. Unfortunately, we didn't make it far. On our way onto the freeway (again, my head was down, as I was looking at my iPad) we were hit. Apparently we were going too slow and another car was going too fast and we got t-boned RIGHT where I was sitting. I was in the back right of the car. Right as the impact occurred I remember a lot of screaming. I felt like my lungs were crushed, I couldn't breathe. (Fortunately, that sensation wasn't as bad as the rest of me.) The window to the right of me was crushed and gone, my glasses had flown out the window, and there was blood-- we had no idea who's blood it was. Molly had memory loss, she was FREAKING OUT. And when I saw freaking out, I mean freaking out. She was scaring all the kids in the car. When the BYU student tried calming her down, she turned to me and asked who this guy was and why he was here. Then she started asking where we were, and where we were coming from and going. She asked who all these people were. She was completely confused. I kept answering her questions, but by the 10th time, I was starting to get really concerned. When the first set of paramedics got there I told them what was going on from my perspective, and told them to get Molly first. I had already called my parents and let them know what happened briefly but had to go once the paramedics got there. I saw them taking on a second stretcher, the passenger of the pickup truck that hit us. They were in the first ambulance that was there locally (took 15 minutes to get to us). Then we waited another 30 ish minutes for the ambulance from the hospital in Fillmore to get to us.
They first got the little girl sitting between Molly and I and took her out of the car. (Her head was the one bleeding as we discovered.) She was in a lot of pain, and it was so sad and so scary. After they took Molly, I kept saying over and over again "you're being so brave" to the little girl. Turns out she broke her collar bone and got staples in her head after colliding heads with Molly.
Then they finally got to me. At this point I was in a LOT of pain. My ankle was killing me. It felt like there was glass in my ankle. Ouch. Also, even though I could move my toes (HALLELUJAH I'm not paralyzed) I couldn't move much else. My hips were in an EXTREME amount of pain!! I just remember this one guy who saw the accident run up and he stood by me the whole time, holding my hand, talking to me about what was going on and about my life, and advised me not to move. He was also one of the men who helped the paramedics get me into the ambulance. When the paramedics got there for me and the little girl, they took her first (it was easier to reach her) and then they had to get me. I screamed a lot. It hurt sooooo bad. They had to lay me down on a stretcher they had weaseled into the van. The man who was with me was the only reason I wasn't in worse shape. He made sure the paramedics were attentive to my ankle and my hips. When they finally got me out of the car on the stretcher and to the ambulance the man said his goodbyes and I started crying hysterically. He was God sent.
The ambulance ride was about half an hour and the poor little girl. She was in the ambulance alone (well, with me, but no parents). She was so terrified. I kept saying it would be okay, I hope that helped some.
When we got to Fillmore hospital we were rushed in and I immediately was explaining what was hurting, how bad of pain I was in (about a 12/10 at this point), and asking how everyone else was doing. I was so worried about my sister Molly. They took me in for x-rays and CT scans of my body and had to flatten me out. At this point my legs we still bent with my feet on the stretcher but my knees up. It hurt soooo bad. (I learned later that I had a sprained knee, and that's why it hurt so bad.) But, they did the scans, and got me some pain meds to ease the crazy pain. They told me I had fractured my pelvis and ribs.
They didn't have the necessities to take care of me in Fillmore, so they told me they were life flighting me to Utah Valley Regional Medical Center (the hospital in Provo). They wrapped my pelvis. It was one of the most excruciating moments of my life. I was then life flighted up to Provo. When I arrived, my mom's cousin Candy was there waiting and we listened as the doctor told explained my injuries in more detail. I fractured my pelvis in 2 places, and fractured my sacrum. I also broke three ribs. My ankle wasn't broken, just sprained. Within 20ish minutes I was moved to a hospital bed and was brought to a room. When I got upstairs, my brother-in-law's brother and his wife were there and they helped me fill out all that nasty paperwork the hospital gives you. The next day my parents flew into town from Vegas and stayed for some time.
I was visited by many friends and family members. I felt so blessed. It was nice to have the support when I wasn't sleeping and was in so so so much pain.
In time, I was released from the hospital and my mom and I went to my dad's friend Steve's house in Provo. He was soooo nice to let us stay there while I recovered and finished school. It was so nice to have the support of my classmates who helped me finish my classwork and helped me study for finals. They were so sweet. Once finals were over, we made the trip home...
When we got to the airport, the flight had been cancelled. The soonest they could get us home was Dec 26th-- the day AFTER Christmas. So, my mom talked to every supervisor's supervisor's supervisor and we finally found a flight out of Boise, Idaho the next day. We weren't able to get a rental car, as all the one way rental cars were taken, so we prayed and posted on FB, and within a short time the Riedlers came and picked us and ALL our luggage up and we were on our way. We drove halfway to Burley, Idaho where my Aunt Catie picked us up and we drove to Burley for the night. The next morning Catie's husband Steve's grandaughter came and picked us up and drove us to Boise. We got on our flight and flew to Denver. Our layover was longer than expected as our flight home was delayed. In time, we got on the plane and flew home. I fell asleep on the flight, and when I awoke, I was in monstrous amounts of pain. We had left one of my three pain meds in Burley so I was only on 2 which was disastrous. But, we managed to get to Baltimore, MD and we were met by my Daddy and my brother-in-law Kenny. They got us and we drove back to Springfield, FINALLY.
Within a few weeks I saw an orthopedic surgeon and he let me know things were healing nicely. A couple weeks after that we saw him again and he said I was healed completely! SO, although I had a roller coaster of a ride and was in 10/10 pain for a while, I was able to heal and now I am back to normal:) In fact, I feel better than ever.
Life isn't always as bad as it seems. In the darkest, most painful moments, we can find true happiness and blessings that we would have missed otherwise. I am grateful for these dark moments because I have seen miracles occur right in front of my eyes through these dark moments.
- J
Thursday, February 27, 2014
Monday, February 24, 2014
My Depression Story
Deep down I think I've always suffered from depression. Something has always gotten me down. In fact, one of my 7 goals to reach before I'm 30, that I wrote years ago, I wrote that I wanted to be truly happy.
Back when I was going to girls camp, I made friends with my counselor at the camp and would email her about all the problems I faced and all the troubles I was going through. I would share with her how depressed I was and it got to the point where not only did she fear for my life, but she let my parents know what was going on. I wasn't on medicine. I wasn't seeing a therapist. She had become a sort of-therapist for me which, looking back now, wasn't fair to her. I was really down then. I contemplated all the ways to just end my young life. I was miserable. I would break into tears randomly and without control. It didn't help that it seemed to me at the time that I had no friends.
I had friends in middle school but when I got to high school at the mere age of 13, all my friends had gone to a different school. Lucky for me I found "friends" through the choir program. But after a year, they too were gone away, to college, and I was stuck with the need to make new friends once again. I constantly was forcing myself to try to fit in, to be someone people would not only want to be friends with, but beg to be friends with.
I felt I needed friends because without them I felt worthless. In fact, I felt worthless as is. Sometimes I still do.
When my depression turned to pure anger and malice, I ended up hurting the people I was closest to and ruined relationships to this day I regret ruining. To my parents, especially my mother, I am sorry for breaking your heart, hurting your feelings, and betraying your trust day after day, year after year. To JeanMarie, I am sorry for treating you the way I did when I was in the stage of trying to "fit in". And to Sister Stewart, I am sorry for hurting your daughter and for treating her with such disrespect. To my seminary teachers, especially Sister Westwood, I am terribly sorry for ruining the spirit of your class and for detracting from the message you were always trying to share. I am sorry for being so rude to you, and the class. And on that note, to my seminary classmates, I am sorry for whispering, passing notes, talking bad about you, and for detracting from the spirit that you could've felt. And to all the others out there that I hurt, offended, betrayed, or abused, I am honestly sorry.
After struggling for a while, and realizing my church bishop couldn't help the issue, I finally had to see a therapist. I hated seeing someone. In fact, I felt broken. That feeling of worthlessness just increased. I also saw my doctor who put me on some anti-depressants. That helped some. But, I was still depressed.
My freshman year was a disaster. My depression got the best of me and I was leaning on people, once again, for constant support. They were my literal life line. Without Hannah, Kelsey, and Paul, I wouldn't be here today. They were God sent. They listened to the 17-18 year old me babble on, complaining, and asking "why me?" and if I had the worst life. In that moment, I sure felt I did. Years later Paul told me that he honestly wasn't sure that when he got back from his 2-year church mission I'd even be here. That kinda hit home. I knew then that it was worse than I remembered.
When I got to BYU in Utah probably during the second half of my freshman year, I saw a doctor who finally found a medicine that helped. They also diagnosed me as being bipolar. I had never thought about being bipolar but when I got diagnosed, all the sudden I had answers! The medicine is called Abilify. And for three years I was stable.
That was until I chose to serve a mission myself. Sound weird? Let me explain. During those three years I got really close to God. I was in SUCH a good place. I talked with my bishop and decided I wanted to go on a church mission. He worked with me to get better and better spiritually. I also started biking, and would bike up to 17 miles a day. God was going to work miracles through me somewhere in the world, in fact, it was a miracle in itself that I was even in this good of a place based on the decade that preceded it. I attended the missionary preparation and the temple preparation classes my church offered to prepare myself for being a missionary and attending the mormon temple. Within a few months, I met with my bishop and stake president and put in my mission papers. AKA I applied to be a missionary awaiting my call to see where I would serve my mission. I never expected the phone call I got a couple weeks later. I was told that I would not be allowed to serve because of the Abilify that I was on. Apparently it is addictive and therefore isn't allowed for missionaries to take. I was told however, that if over the next 6-7 months I would switch medicines with the oversight of my doctor, and remain stable, then I would be allowed to go.
I was hopeful. I tried medicine #1-- it made me numb. I stopped feeling any and all emotions. It was amazing how within a month of being in the best place of my life, I started shutting down. So, I talked to my doctor and went on medicine #2-- it made me depressed. It also made me slightly suicidal. I was back to that 14 year old me. Depressed, detached, angry, malicious. So I came to the decision that I could not serve a mission. Although I was prepared and felt I had been ready... at the state I was currently in, there is no way I could serve a mission. I wasn't happy or close to God anymore. So, I went back on Abilify. But, my depression remained. As a matter of fact, the doctors I was working with put me on Zoloft as well to help my depression.
For the next 2-3 years (up through now) my depression has remained relatively stagnant. But at least it hasn't gotten too much worse. I still have those days when I break down and feel life isn't worth living. But I won't let my depression get the best of me. I struggle more than I let on. In fact, I struggle every day. But I have hope. And one day I believe I will be resurrected and have a perfect body and spirit. So until then, I wait. We all wait. I know I'm not the only one struggling and that is another thing that keeps me going. So hold on, and if you ever need to talk, let me know.
- J
Sunday, February 23, 2014
My Fibromyalgia Story
When I was a senior in high school I started getting really, really sick. I missed a lot of class, and was absolutely miserable. The only thing that made me feel any better would be to literally just sleep. I was exhausted all the time, and had pain in my stomach and pretty much everywhere else too.
My doctor couldn't explain it.
A friend in my church's congregation told me that she had the same symptoms. She had something called FIBROMYALGIA. It is an auto-immune disorder, and "is a common syndrome in which a person has long-term, body-wide pain and tenderness in the joints, muscles, tendons, and other soft tissues. Fibromyalgia has also been linked to fatigue, sleep problems, headaches, depression, and anxiety."
What a crazy crazy disease. My doctor didn't believe in Fibromyalgia. So I was stuck without medicine to help relieve pain, or help rid me of the exhaustion, and constant need to sleep. But with this self-diagnosis, I was able to have some relief from the stress of constantly wondering what was wrong. I could finally have something to explain to my teachers and my counselor for missing so much school.
Then when I went out to Utah for college at Brigham Young University, I saw a Rheumatologist in Provo who diagnosed me for real this time and gave me medicine to help with the pain and sleep issues. Although for the next 2 years I had spouts of relief, I still suffered tremendously. It was so hard to function. I was exhausted and suffered from chronic fatigue more than regularly. In fact, it was so bad that I would nap in the middle of the day for half the day. I started to care less and less about school at the time because I felt so sick. I would be in class when all the sudden a wave of nauseousness or intense stomach pain would come on and I would be left in a fetal position clenching my fists, holding my stomach.
But as the years passed I was able to get off the medicine and find relief. I still have trouble sleeping, have tenderness in my muscles and tendons, and suffer from depression and anxiety. BUT, it is in control. I am not the muddled mess I once was. I have strength through my adversity and trials. I get stronger every day, and even when my body starts shutting down, I have faith and in time I am able to recover, or at least start feeling better in that moment.
- J
My doctor couldn't explain it.
A friend in my church's congregation told me that she had the same symptoms. She had something called FIBROMYALGIA. It is an auto-immune disorder, and "is a common syndrome in which a person has long-term, body-wide pain and tenderness in the joints, muscles, tendons, and other soft tissues. Fibromyalgia has also been linked to fatigue, sleep problems, headaches, depression, and anxiety."
What a crazy crazy disease. My doctor didn't believe in Fibromyalgia. So I was stuck without medicine to help relieve pain, or help rid me of the exhaustion, and constant need to sleep. But with this self-diagnosis, I was able to have some relief from the stress of constantly wondering what was wrong. I could finally have something to explain to my teachers and my counselor for missing so much school.
Then when I went out to Utah for college at Brigham Young University, I saw a Rheumatologist in Provo who diagnosed me for real this time and gave me medicine to help with the pain and sleep issues. Although for the next 2 years I had spouts of relief, I still suffered tremendously. It was so hard to function. I was exhausted and suffered from chronic fatigue more than regularly. In fact, it was so bad that I would nap in the middle of the day for half the day. I started to care less and less about school at the time because I felt so sick. I would be in class when all the sudden a wave of nauseousness or intense stomach pain would come on and I would be left in a fetal position clenching my fists, holding my stomach.
But as the years passed I was able to get off the medicine and find relief. I still have trouble sleeping, have tenderness in my muscles and tendons, and suffer from depression and anxiety. BUT, it is in control. I am not the muddled mess I once was. I have strength through my adversity and trials. I get stronger every day, and even when my body starts shutting down, I have faith and in time I am able to recover, or at least start feeling better in that moment.
- J
Saturday, February 22, 2014
My Cancer Story
January 2011 I started chemotherapy.
My first round of chemo was described as follows:
My first week of chemotherapy was very... scheduled. My mom typed up a schedule and taped it to my computer so that when I woke up in the morning, I could follow it.
1. Wake up on empty stomach
2. Take Kytril (anti-nausea med)
3. Wait or go back to sleep for 30 minutes
4. Take Tremodar (chemo med)
5. Wait or go back to sleep for 1 hour
6. Eat, take other medications, etc.
Surprisingly, I was very good at remembering the schedule every morning. And yes, I was lucky and somehow managed to get pill chemo. And hey- if you have to have chemo, this is the way to go.
Days 1 - 3 were easy-peasy. I spent most of my time at the Ray (family)'s house hanging out with the kids in the family. Their daughter Kristina was about to head back to college, so I spent as much time as possible there. They thought it was funny how good I was feeling and they would make jokes, but I was thinking "Hey... I lucked out! Pill chemo, and no side effects?! Holla!"
Then I woke up morning of Day 4, and I felt like crap. I was nauseous and tired and just felt awful. I felt sick all day, and that continued day 5. Those side effects even carried over to the first day after chemo. It was no fun because I was hungry, but I couldn't really eat anything.
Since then, I have been feeling pretty good, just hungry. As I try to explain it, it's like you literally feel full but you're starving. Confusing? Welcome to my life.
I had been sick but compared to what came next... It was nothing.
The second month of chemo, I took a trip. On my trip to Utah I got really sick. I weighed myself, and I was down to 111 pounds, which is underweight on the BMI scale and really scary for someone who is already skinny enough. I got so sick that I was constantly nauseous and had zero appetite. Nothing sounded good. Everything made me sick--so sick, in fact, that I stopped eating all together. That was bad news. I started getting very very weak and felt like I was gonna faint. I called my mom and explained what was going on. She told me that if I didn't get liquid and some food in my system, I was going to have to be hospitalized to get the nutrients I needed. I was totally bummed out. My aunt Carol stopped by and told me I had a fever and that I did not look well. She told me to pack my bags and that I was going to stay with her. So, I stayed at her house for a week where I had vitamin water, oranges, bananas, applesauce, bread, and other good foods like tomatoes :) My aunt made sure I ate 3 meals a day and made sure I was getting protein (peanut butter goodness), and after a week, I started feeling better. Not great, but better.
The next 4 months were much better. I was home and my health could be monitored. It was quite similar to my first month just gradually getting a little bit worse every month.
Then I got the most incredible news. News I had only dreamt of hearing at this point.
Yesterday I had an MRI. The MRI was to determine whether or not I would continue with 6 more months of chemotherapy. Today I met with my Oncologist, Dr. Patel, to go over the MRI. She went over the results and let me know that my MRI was clean, and that I am officially in remission! Thank you for your thoughts and prayers during this time. I am officially a cancer survivor!
I could not have been happier in that moment. And although I have MRIs every 6 months, I will take that over having to go through cancer again. I am one lucky lucky girl.
- J
My first round of chemo was described as follows:
My first week of chemotherapy was very... scheduled. My mom typed up a schedule and taped it to my computer so that when I woke up in the morning, I could follow it.
1. Wake up on empty stomach
2. Take Kytril (anti-nausea med)
3. Wait or go back to sleep for 30 minutes
4. Take Tremodar (chemo med)
5. Wait or go back to sleep for 1 hour
6. Eat, take other medications, etc.
Surprisingly, I was very good at remembering the schedule every morning. And yes, I was lucky and somehow managed to get pill chemo. And hey- if you have to have chemo, this is the way to go.
Days 1 - 3 were easy-peasy. I spent most of my time at the Ray (family)'s house hanging out with the kids in the family. Their daughter Kristina was about to head back to college, so I spent as much time as possible there. They thought it was funny how good I was feeling and they would make jokes, but I was thinking "Hey... I lucked out! Pill chemo, and no side effects?! Holla!"
Then I woke up morning of Day 4, and I felt like crap. I was nauseous and tired and just felt awful. I felt sick all day, and that continued day 5. Those side effects even carried over to the first day after chemo. It was no fun because I was hungry, but I couldn't really eat anything.
Since then, I have been feeling pretty good, just hungry. As I try to explain it, it's like you literally feel full but you're starving. Confusing? Welcome to my life.
I had been sick but compared to what came next... It was nothing.
The second month of chemo, I took a trip. On my trip to Utah I got really sick. I weighed myself, and I was down to 111 pounds, which is underweight on the BMI scale and really scary for someone who is already skinny enough. I got so sick that I was constantly nauseous and had zero appetite. Nothing sounded good. Everything made me sick--so sick, in fact, that I stopped eating all together. That was bad news. I started getting very very weak and felt like I was gonna faint. I called my mom and explained what was going on. She told me that if I didn't get liquid and some food in my system, I was going to have to be hospitalized to get the nutrients I needed. I was totally bummed out. My aunt Carol stopped by and told me I had a fever and that I did not look well. She told me to pack my bags and that I was going to stay with her. So, I stayed at her house for a week where I had vitamin water, oranges, bananas, applesauce, bread, and other good foods like tomatoes :) My aunt made sure I ate 3 meals a day and made sure I was getting protein (peanut butter goodness), and after a week, I started feeling better. Not great, but better.
The next 4 months were much better. I was home and my health could be monitored. It was quite similar to my first month just gradually getting a little bit worse every month.
Then I got the most incredible news. News I had only dreamt of hearing at this point.
Yesterday I had an MRI. The MRI was to determine whether or not I would continue with 6 more months of chemotherapy. Today I met with my Oncologist, Dr. Patel, to go over the MRI. She went over the results and let me know that my MRI was clean, and that I am officially in remission! Thank you for your thoughts and prayers during this time. I am officially a cancer survivor!
I could not have been happier in that moment. And although I have MRIs every 6 months, I will take that over having to go through cancer again. I am one lucky lucky girl.
- J
Friday, February 21, 2014
My Tumor Story
It was a Sunday evening. I was standing there and all the sudden it hit me. I had never felt such pain... ever. I literally fell to the ground, collapsing, grabbing my head in agony. My friend was concerned. She considered calling 911, but just as quickly as the pain came, it was gone.
What a lot of people know about me is that I am a WebMD guru. I have the app. I use the symptom checker every time I feel sick in the slightest. So, of course, when I had a chance, I WebMD'd my symptoms and much to my dismay I discovered I was probably going to die. Yes, according to my research I had a brain tumor. I called my mother, she reassured me that I was not going to die. In fact, I was young and relatively healthy, I had no reason to be concerned. She told me it was probably a migraine.
Over the next three days the headaches returned. Most would be convinced by now that they were indeed migraines, but I on the other hand was convinced more than ever that I had the brain tumor that WebMD had diagnosed me with. Wednesday morning came, I was sitting in my 8 am class when another "migraine" came along. It was so severe that I left class, called my doctor's office and they got me an appointment for that morning. I went back to class, grabbed my stuff and drove straight to the doctor's office.
Dr. Robinson was visiting from the sports medicine department. He was doing his fellowship (I believe) at Utah Valley Regional Medical Center. But, he was randomly at the family practice. Little did I know-- that man would save my life.
I met with the doctor (keeping my insane brain tumor theory to myself). He asked me questions about my headaches and didn't blink when I said they'd only been going on for 3 days. He didn't turn me away, give me a prescription for migraines, or anything like that. Instead, he talked with me gently. He asked me what I wanted to do, and told me what he thought we should do. He said he wanted me to go over to the hospital for a CT scan. He said he wanted to check for a brain tumor. (WHAT?!) But, he assured me no one he had ever sent over for a CT scan in this circumstance ever had a tumor. After the CT scan, the technician said they saw something questionable, called the doctor, spoke with him, and then the doctor spoke with me over the phone. He said he wanted an MRI. I wasn't even that scared at this point. I had half prepared myself for this moment over the past few days, and half was so shocked that it hadn't even really hit me. The technician showed me the CT scan and pointed out where they were seeing something. The doctor called again, and said that he wanted to do an immediate MRI. They kept my IV in and sent me over for an MRI. (I was alone since I left for the doctor at 8:30 that morning. I hadn't thought to call anyone because knowing my luck, they would find nothing, and I would be back in class the next day as if nothing had ever happened.)
After my MRI, I was told the doctor would call with any news. Within 3 hours of leaving the hospital I got the call. A call that changed my life forever. Dr. Robinson called and said they had found a tumor in my brain. Again, half of me had been prepared for that news. Afterall, WebMD had diagnosed me with a brain tumor 3 days earlier. But, the other half of me was scared to death.
I was alone when I got the news. I broke into tears. I immediately called my parents. Once. Twice. Three times. Four. Five. Six times. No answer. I called my sisters, no answers. My sister Allie finally answered but I was too upset to talk, so I hung up. (I will forever regret not talking with her at that moment.) I called my best friend at the time and talked with him about what I had learned. He was so understanding and just listened to me. I still didn't know much at all about the tumor, but my fears got the best of me, and yet, he listened. It was the greatest blessing. Looking back now, I feel he was in my life for that very moment. Because God knew I needed someone to talk to in that time. When I finally got a hold of my mom, and told her what news I received-- that I had a brain tumor-- she didn't believe me. She thought WebMD had once again got the best of me. But it hadn't. I told her again what happened. Finally she realized I was serious, and as I shook and trembled, we cried.
The next day my Aunt Carol went with me to Dr. Robinson's office over at the sports medicine center. He explained what he knew about the tumor and what kind of tumor it was expected to be. He recommended I see a surgeon right away. We called around using every apparent favor we had. Finally we got an appointment to see the well-known Dr. Reichman. We saw him a few days later and he explained what he could. He was kind, and concerned. Took time to talk and answer questions. We scheduled surgery for Nov 1, 2010. This was to be a biopsy surgery.
My mom flew into town. She worked with me to finish packing up my apartment, withdraw from my classes, get out of my housing contract, etc. Then early morning Nov 1, 2010 we drove to UVRMC and I had my first brain surgery.
I was as lucky as could be. I had a TON of friends and family come visit me the week I was in the hospital. I realized then, at that moment, who my true friends were. (I kissed every single person on the cheek. It was kind of a random experience that ended up kinda neat.) I got bouquets and bouquets of flowers (my most favorite thing in the world). It went as well as it could've. After a week, I finally flew home.
Nov 30, 2010 I had my second brain surgery by Dr. Watson. He was a quirky guy but one of the nicest and most genuine people I've ever met to this day. He did a marvelous job-- and this time removed the rest of the tumor. After some time we learned what kind of tumor it actually was. It was an Oligodendroglioma. A rare brain tumor usually found in 50-60 yr old men. They usually die within 10 years of being diagnosed. But we were hopeful. I was young, only 20, and we were aggressive. We also learned it was cancerous. My brain literally was the tumor and it was killing me-- so I like to say.
I started chemotherapy in Jan 2011 and did 6 rounds of chemo. Fortunately for me, I was able to take a pill every day for 5 days once a month. Sounds bad, but it TOTALLY beats being in a hospital and practically living there for 6 months.
Jun 2011 I was told I was CANCER FREE!
It's been over 3 years since I was diagnosed, and almost 3 years since I was diagnosed in remission. It will be a happy day when I turn 101 and live past when my doctor's expected.
Moral of this story? TRUST WEBMD. No, I'm kidding. Seriously, it was a joke. Stop going to webmd.com. Bad idea.
More to come.
- J
What a lot of people know about me is that I am a WebMD guru. I have the app. I use the symptom checker every time I feel sick in the slightest. So, of course, when I had a chance, I WebMD'd my symptoms and much to my dismay I discovered I was probably going to die. Yes, according to my research I had a brain tumor. I called my mother, she reassured me that I was not going to die. In fact, I was young and relatively healthy, I had no reason to be concerned. She told me it was probably a migraine.
Over the next three days the headaches returned. Most would be convinced by now that they were indeed migraines, but I on the other hand was convinced more than ever that I had the brain tumor that WebMD had diagnosed me with. Wednesday morning came, I was sitting in my 8 am class when another "migraine" came along. It was so severe that I left class, called my doctor's office and they got me an appointment for that morning. I went back to class, grabbed my stuff and drove straight to the doctor's office.
Dr. Robinson was visiting from the sports medicine department. He was doing his fellowship (I believe) at Utah Valley Regional Medical Center. But, he was randomly at the family practice. Little did I know-- that man would save my life.
I met with the doctor (keeping my insane brain tumor theory to myself). He asked me questions about my headaches and didn't blink when I said they'd only been going on for 3 days. He didn't turn me away, give me a prescription for migraines, or anything like that. Instead, he talked with me gently. He asked me what I wanted to do, and told me what he thought we should do. He said he wanted me to go over to the hospital for a CT scan. He said he wanted to check for a brain tumor. (WHAT?!) But, he assured me no one he had ever sent over for a CT scan in this circumstance ever had a tumor. After the CT scan, the technician said they saw something questionable, called the doctor, spoke with him, and then the doctor spoke with me over the phone. He said he wanted an MRI. I wasn't even that scared at this point. I had half prepared myself for this moment over the past few days, and half was so shocked that it hadn't even really hit me. The technician showed me the CT scan and pointed out where they were seeing something. The doctor called again, and said that he wanted to do an immediate MRI. They kept my IV in and sent me over for an MRI. (I was alone since I left for the doctor at 8:30 that morning. I hadn't thought to call anyone because knowing my luck, they would find nothing, and I would be back in class the next day as if nothing had ever happened.)
After my MRI, I was told the doctor would call with any news. Within 3 hours of leaving the hospital I got the call. A call that changed my life forever. Dr. Robinson called and said they had found a tumor in my brain. Again, half of me had been prepared for that news. Afterall, WebMD had diagnosed me with a brain tumor 3 days earlier. But, the other half of me was scared to death.
I was alone when I got the news. I broke into tears. I immediately called my parents. Once. Twice. Three times. Four. Five. Six times. No answer. I called my sisters, no answers. My sister Allie finally answered but I was too upset to talk, so I hung up. (I will forever regret not talking with her at that moment.) I called my best friend at the time and talked with him about what I had learned. He was so understanding and just listened to me. I still didn't know much at all about the tumor, but my fears got the best of me, and yet, he listened. It was the greatest blessing. Looking back now, I feel he was in my life for that very moment. Because God knew I needed someone to talk to in that time. When I finally got a hold of my mom, and told her what news I received-- that I had a brain tumor-- she didn't believe me. She thought WebMD had once again got the best of me. But it hadn't. I told her again what happened. Finally she realized I was serious, and as I shook and trembled, we cried.
The next day my Aunt Carol went with me to Dr. Robinson's office over at the sports medicine center. He explained what he knew about the tumor and what kind of tumor it was expected to be. He recommended I see a surgeon right away. We called around using every apparent favor we had. Finally we got an appointment to see the well-known Dr. Reichman. We saw him a few days later and he explained what he could. He was kind, and concerned. Took time to talk and answer questions. We scheduled surgery for Nov 1, 2010. This was to be a biopsy surgery.
My mom flew into town. She worked with me to finish packing up my apartment, withdraw from my classes, get out of my housing contract, etc. Then early morning Nov 1, 2010 we drove to UVRMC and I had my first brain surgery.
I was as lucky as could be. I had a TON of friends and family come visit me the week I was in the hospital. I realized then, at that moment, who my true friends were. (I kissed every single person on the cheek. It was kind of a random experience that ended up kinda neat.) I got bouquets and bouquets of flowers (my most favorite thing in the world). It went as well as it could've. After a week, I finally flew home.
Nov 30, 2010 I had my second brain surgery by Dr. Watson. He was a quirky guy but one of the nicest and most genuine people I've ever met to this day. He did a marvelous job-- and this time removed the rest of the tumor. After some time we learned what kind of tumor it actually was. It was an Oligodendroglioma. A rare brain tumor usually found in 50-60 yr old men. They usually die within 10 years of being diagnosed. But we were hopeful. I was young, only 20, and we were aggressive. We also learned it was cancerous. My brain literally was the tumor and it was killing me-- so I like to say.
I started chemotherapy in Jan 2011 and did 6 rounds of chemo. Fortunately for me, I was able to take a pill every day for 5 days once a month. Sounds bad, but it TOTALLY beats being in a hospital and practically living there for 6 months.
Jun 2011 I was told I was CANCER FREE!
It's been over 3 years since I was diagnosed, and almost 3 years since I was diagnosed in remission. It will be a happy day when I turn 101 and live past when my doctor's expected.
Moral of this story? TRUST WEBMD. No, I'm kidding. Seriously, it was a joke. Stop going to webmd.com. Bad idea.
More to come.
- J
Wednesday, February 19, 2014
My Alopecia Story
I always thought I was different. In fact, I knew it. I was determined to be different in every possible way from the time I was little.
I changed the spelling of my name every year from kindergarten until my first year of college.
When I had hair, I'd do it as crazy and random as possible. And I'd dress in my own 'special' style.
I just had to stand out. I wanted what came so naturally to me to be what defined me.
But when I was in 6th grade, and was at the mere age of 11, I underwent the most defining moment of my young life. I was sitting on the ground as my mom brushed my light blonde hair. As she brushed, she found a bald spot about the size of a quarter on the back of my head. We were curious so we went and saw Dr. Nekoba (our family doctor). He diagnosed me as having an auto-immune disorder. It was called ALOPECIA AREATA and we were told my hair would grow back. But as weeks passed, my hair started falling out more and more until there was a bald patch about the size of an adult's hand. When we went back to the doctor, he said I had ALOPECIA TOTALIS. It was a type of Alopecia where you lose all the hair on your head. It was a shock, but because I was young, it wasn't too big of a deal to me. I was told there was only a 50% chance of the hair growing back. But I was hopeful. 50% was still a big percent. But as the months passed it was clear-- all that hope was for naught. I ended up losing my eyebrows, eyelashes, all the hair on my head, and all the hair on my body. I had ALOPECIA UNIVERSALIS. The hair fell out in clumps. I would hop in the shower and the floor would be covered in hair. I would fall asleep and when I'd wake there would be a pile of hair on my pillow. Still, I took pride in my hair. I didn't let my parent's shave my head. I was once again determined. Determined to wear the hair I still had proudly and I did just that until every last hair fell out. We like to joke that the last hair was pulled out by a good friend, but let's be honest-- who knows what really happened to it.
It was a few years before I met anyone with Alopecia, and I think that was the hardest part.
People assumed I had cancer, and most of the time I wouldn't correct them. In middle school PE my teacher would ask if it was a "good day" or a "bad day" to see if I needed to sit out for the day, and I would lower my head and say "it's a bad day". Some would consider that a blatant lie. I instead chose to taken advantage of my situation, and to be honest, half the time it wasn't necessarily a good day. I would get stares, people would make comments, even children would ask why that "boy" was bald. It didn't bother me. In fact, I embraced it. My friend, in middle and high school, would joke with me and in front of a crowded hallway, we'd act all serious as she'd say, "I can't be friends with a bald person". People would act shocked, some actually were. But we'd meet up a few minutes later and just laugh. Being bald became my identity, it became part of who I was.
When I went to college everything changed.
See, people had gotten used to me being bald. After a while, people realized I didn't have cancer and were okay with me being bald. It started out as a burden to me, my family, and my close friends. But as the years passed, it became a blessing. But, when I got to Brigham Young University for college in 2008 no one had a clue who I was, why I was bald, or anything about Alopecia. I was starting from square one... again. People's stares weren't just out of curiosity anymore, they were cruel stares. People would judge, they would make comments, they would make assumptions. I had to find the right time to say, "hey, actually, I don't have cancer". I had to explain I had an auto-immune disorder. I had to explain what Alopecia was again, and again, and again. It became harder and harder. I started to feel ridiculously self-conscious. I began wearing a wig regularly, that I had only 'showed off' in high school once. I didn't know how to wear it, or do the hair to look natural and so I looked incredibly awkward. No one said a word. No one wanted to offend me. It wasn't until years later that I looked back and saw that. I realized how embarrassing it was for me-- that no one said a word. For the next year or so I'd wear my wig to classes, to church, out with friends or to school events. I'd wear my wig every sunday, and some semesters, I'd wear it every day to class. I was so worried that people would be cruel that I lost my identity completely.
It took years to finally be comfortable in my own skin, literally.
But I got over it. And I had the support of my family, church leaders, and some really good friends. They reminded me of the little girl who lost her hair those many years before, and reminded me that I was still different despite the baldness. I was still me. I stopped wearing the wig. My roommate Halee would tell me every time I considered wearing my wig that she liked me "better bald", that I was beautiful. And soon enough, I believed it too.
Since I've been to college, I've met others with Alopecia. Girls and boys. Men and women. I think that helps me just as much as it helps them to know someone else with the disease. Meeting someone with Alopecia is a wonderful wonderful feeling. It's like for a moment you're not alone, in fact, in the moment after that moment, you're still not alone. Because you realize there are others out there who feel just like you, and have been in similar circumstances-- always being asked if they have cancer, being told they look like a boy, being called sir, or brother.
I haven't changed the spelling of my name in years. I don't have hair to style anymore. I don't dress like a crazy person. But I am still determined to be different. And I am. And I wouldn't change my experiences for anything. Do I still wish I had hair? Every day. Do I still wish I could feel the wind blow through my hair? Every time I drive with the windows down. Maybe someday I'll be lucky enough to have hair once again. But for now, I'll tell the little kids that I'm a girl, and that my hair fell out when I was 11. I will tell people that I don't have cancer. And maybe, just maybe I will forget for a minute that I am different, and I'll just pretend I blend in. And then in an instant, I'll go back to being me. Maybe that minute will be wonderful, and maybe that minute will be a glimpse into my future. But I will never stop being different. Even in that minute. Because being different is just who I am, and I wouldn't want it any other way.
- J
I changed the spelling of my name every year from kindergarten until my first year of college.
Jenny
Jeny
Jennie
Jenie
Jenni
Jeni
Jenn
Jen
Jehn
Jennifer
Jenifer
Jenne
Jene
Jenna
I just had to stand out. I wanted what came so naturally to me to be what defined me.
But when I was in 6th grade, and was at the mere age of 11, I underwent the most defining moment of my young life. I was sitting on the ground as my mom brushed my light blonde hair. As she brushed, she found a bald spot about the size of a quarter on the back of my head. We were curious so we went and saw Dr. Nekoba (our family doctor). He diagnosed me as having an auto-immune disorder. It was called ALOPECIA AREATA and we were told my hair would grow back. But as weeks passed, my hair started falling out more and more until there was a bald patch about the size of an adult's hand. When we went back to the doctor, he said I had ALOPECIA TOTALIS. It was a type of Alopecia where you lose all the hair on your head. It was a shock, but because I was young, it wasn't too big of a deal to me. I was told there was only a 50% chance of the hair growing back. But I was hopeful. 50% was still a big percent. But as the months passed it was clear-- all that hope was for naught. I ended up losing my eyebrows, eyelashes, all the hair on my head, and all the hair on my body. I had ALOPECIA UNIVERSALIS. The hair fell out in clumps. I would hop in the shower and the floor would be covered in hair. I would fall asleep and when I'd wake there would be a pile of hair on my pillow. Still, I took pride in my hair. I didn't let my parent's shave my head. I was once again determined. Determined to wear the hair I still had proudly and I did just that until every last hair fell out. We like to joke that the last hair was pulled out by a good friend, but let's be honest-- who knows what really happened to it.
It was a few years before I met anyone with Alopecia, and I think that was the hardest part.
People assumed I had cancer, and most of the time I wouldn't correct them. In middle school PE my teacher would ask if it was a "good day" or a "bad day" to see if I needed to sit out for the day, and I would lower my head and say "it's a bad day". Some would consider that a blatant lie. I instead chose to taken advantage of my situation, and to be honest, half the time it wasn't necessarily a good day. I would get stares, people would make comments, even children would ask why that "boy" was bald. It didn't bother me. In fact, I embraced it. My friend, in middle and high school, would joke with me and in front of a crowded hallway, we'd act all serious as she'd say, "I can't be friends with a bald person". People would act shocked, some actually were. But we'd meet up a few minutes later and just laugh. Being bald became my identity, it became part of who I was.
When I went to college everything changed.
See, people had gotten used to me being bald. After a while, people realized I didn't have cancer and were okay with me being bald. It started out as a burden to me, my family, and my close friends. But as the years passed, it became a blessing. But, when I got to Brigham Young University for college in 2008 no one had a clue who I was, why I was bald, or anything about Alopecia. I was starting from square one... again. People's stares weren't just out of curiosity anymore, they were cruel stares. People would judge, they would make comments, they would make assumptions. I had to find the right time to say, "hey, actually, I don't have cancer". I had to explain I had an auto-immune disorder. I had to explain what Alopecia was again, and again, and again. It became harder and harder. I started to feel ridiculously self-conscious. I began wearing a wig regularly, that I had only 'showed off' in high school once. I didn't know how to wear it, or do the hair to look natural and so I looked incredibly awkward. No one said a word. No one wanted to offend me. It wasn't until years later that I looked back and saw that. I realized how embarrassing it was for me-- that no one said a word. For the next year or so I'd wear my wig to classes, to church, out with friends or to school events. I'd wear my wig every sunday, and some semesters, I'd wear it every day to class. I was so worried that people would be cruel that I lost my identity completely.
It took years to finally be comfortable in my own skin, literally.
But I got over it. And I had the support of my family, church leaders, and some really good friends. They reminded me of the little girl who lost her hair those many years before, and reminded me that I was still different despite the baldness. I was still me. I stopped wearing the wig. My roommate Halee would tell me every time I considered wearing my wig that she liked me "better bald", that I was beautiful. And soon enough, I believed it too.
Since I've been to college, I've met others with Alopecia. Girls and boys. Men and women. I think that helps me just as much as it helps them to know someone else with the disease. Meeting someone with Alopecia is a wonderful wonderful feeling. It's like for a moment you're not alone, in fact, in the moment after that moment, you're still not alone. Because you realize there are others out there who feel just like you, and have been in similar circumstances-- always being asked if they have cancer, being told they look like a boy, being called sir, or brother.
I haven't changed the spelling of my name in years. I don't have hair to style anymore. I don't dress like a crazy person. But I am still determined to be different. And I am. And I wouldn't change my experiences for anything. Do I still wish I had hair? Every day. Do I still wish I could feel the wind blow through my hair? Every time I drive with the windows down. Maybe someday I'll be lucky enough to have hair once again. But for now, I'll tell the little kids that I'm a girl, and that my hair fell out when I was 11. I will tell people that I don't have cancer. And maybe, just maybe I will forget for a minute that I am different, and I'll just pretend I blend in. And then in an instant, I'll go back to being me. Maybe that minute will be wonderful, and maybe that minute will be a glimpse into my future. But I will never stop being different. Even in that minute. Because being different is just who I am, and I wouldn't want it any other way.
- J
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