There are a lot of topics I'm excited to discuss in my blog and a lot I want to share about my life, but today something I want to talk about is being thankful. When I first moved into my dorm at Ohio State, I was extremely excited to be on my own for the first time. My roomie seriously rocks and we got assigned to one of the nicer dorms on campus. The first two weeks of school went great, but after just 14 days EDS began to rear its ugly head. My first semester came with a multitude of issues; a bad reaction to one of my medicines that shut down my central nervous system, an irritated nerve in my arm, a flare up in the herniated disc in my spine, chronic migraines, dizziness, daily stomach pains, and fatigue (which ironically could not be helped with sleep because my joint discomfort and other pains kept me from sleeping). In the midst of all of these issues I was trying to "do college." I was taking classes, going to Young Life events, and trying to spend time with my boyfriend and friends all while inconsistently migrating back and forth from campus to my parents house just about 25-30 minutes away. When I was at school, my anxiety was high as I dealt with daily health problems sometimes forcing me to stay in bed or hitch a ride to class with a friend because I couldn't walk. When my health got so bad I had to go home, I missed my friends and was constantly stressed about missing class and Young Life events that I had been excited for. Eventually winter break rolled around and while I expected it to be a time of rest and recovery, I still struggled with trying to feel better. A few days before I was supposed to move back into my dorm for second semester, I ended up in the ER with a severe case of the flu, a throat infection and an ear infection. For someone with a body as weak as mine getting through these kinds of illnesses is a struggle. I missed the entire first week of classes and missed out on reuniting with all my friends as they enjoyed things like going to Young Life and watching the National Championship together on campus (go bucks am I right?). I began recovering from the flu and infection, but now I am struggling as my acid reflux has completely taken over my throat and stomach causing me severe discomfort. The past month for me has been a time of darkness, where I have felt that I'm stuck in a deep hole that always caves in every time I almost make it out. It has been exhausting physically, and especially mentally as my anxiety disorder has been at an all time high. The more sick I am the worse my anxiety is, and the worse my anxiety is the more sick I get. It is a vicious cycle. At this point in life I am about ready to give up, but instead I have decided to give thanks. Today I made it to class for the first time this semester, and even though I only made it to one, boy did I enjoy it. When you go through struggles you start to appreciate things you never would have before. Usually, I would say "ugh, class is the worst." But today, I enjoyed having the opportunity to sit in my class and learn some knowledge! God has provided for me in such big ways with a loving, supporting family who can afford to send me to school and who are always willing to drive me to campus when I'm not feeling well enough to drive myself. Even though I wish I could be back in my dorm already, I was able to even make it to campus today and that's something to be thankful for! Yesterday I was able to attend First Year, an event for Young Life that allows freshmen in college to prepare to be Young Life leaders in a few short months. Even though I still did not feel very well, I got to walk into a room full of 70+ people who love me and care about me, and for that I am so thankful! I think at times it is easiest for me to look on the negative side of things and feel bad for myself. My boyfriend, Taylor, is constantly reminding me to look up in these types of situations (man, am I thankful for him). I can almost guarantee in the past month I have called him crying at least once a day about being in pain or being stressed, and every single time he asks me to name off positive things that happened that day. Of course I am stubborn and resistant at first, but eventually I answer, and every time I find at least three positive things that I can be thankful for. I find when I thank God for all of the blessings He has given me each day, my mental, physical, and spiritual health improve even if it's just the slightest. The truth is, we all have things to give thanks for. Whether it's the yummy ice cream you had today, the kindness of a friend or random stranger, or even just the fact that your legs were well enough to get out of bed this morning, BE THANKFUL. Take it from somebody who knows what it's like to feel like your world is caving in or there isn't any light at the end of the tunnel, if you always look up and give thanks, your days will never be joyless.
"Give thanks to the God of heaven. His love endures forever."
-Psalm 136:26
"The light shines in the darkness, and the darkness has not overcome it."
-John 1:5
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This past weekend I had the opportunity to go to a Young Life event called Buckeye Region Leader Weekend at Great Wolf Lodge. Every year Young Life invites leaders, seniors in high school, first years (leaders in training), and committee members to take a weekend to enjoy fellowship and to refocus our minds on the mission that is Young Life- changing lives through the gospel. Last year, leader weekend was my absolute favorite weekend of the year, hands down. So as you can imagine, I had been pretty stressed last week with all of my recent health problems that I was not going to be able to go. Luckily, I made it down to Mason, OH on friday along with 1,300 others who were pumped to see what the weekend would bring. Another quick post but I just want to throw out there something that I found very helpful today. I recently joined a support group through facebook for Ehlers Danlos Syndrome patients in Columbus and I worked up the courage to post a little about me today. My parents have always tried to get me to contact others with EDS, but I was always hesitant for some weird reason. After posting in my new support group today, I was welcomed with a warm embrace and lots of love! It was so nice to find people out there who understand my situation and who have gone through similar things. It was especially nice to talk to a few people my age who suffer from EDS, something I have never had the privelege to do before. I know the Lord really had His hand in all of this support and I am so excited that He is bringing me some comfort through the story of others. If you suffer from EDS or another chronic illness, I highly suggest joining a support group! I think you will find that people are very willing to share their stories and help provide tips as to how to handle certain situations and what doctors may be a good idea to check out. Usually when I tell people that I have Ehlers Danlos Syndrome I get a lot of very confused faces. My typical response is "it's a genetic connective tissue disorder due to lack of collagen that affects my joints." Which I realize is still probably extremely confusing. The best way to explain EDS is that it's a moving target, you can never really pinpoint exactly what it is, as it is very different for every person who has it. EDS is caused by a genetic defect in connective tissue. It is characterized by a lack of collagen, or the tissue that holds bones together at the joints. The amount of people who suffer from EDS ranges from every 1 in 2,500-5,000 people. I've been told in the past that if you have Ehlers Danlos Syndrome, you probably do not personally know someone else who has it as well. There are six major types of EDS: hypermobility, classical, vascular, kyphoscoliosis, arthrochalasia, and dermatosparaxis. All of these types share the trait of soft skin and other skin problems, joint laxity, and easy bruising. Each type has a unique connective tissue defect that causes and array of other systems. The most common types of EDS are hypermobility and classical, both of which I have been diagnosed with. While EDS directly affects the joints, it can affect the rest of the body as well. The typical symptoms of EDS include chronic joint pain, joint dislocations, and over flexible joints. In my personal battle with EDS I have dealt with all of these common symptoms on top of some more miscellaneous ones as well. I like to describe my case of EDS as causing everything in my body to move extremely slow and for some parts of my body as not functioning as they should. The first symptom I noticed, which led me to get diagnosed, was my body being abnormally prone to injury and extreme joint pain. One of the other most consistent problems I have experienced with EDS is a syndrome called Postural orthostatic tachycardia syndrome (POTS), which is characterized by a large increase in heart rate when changing from an upright position and a decrease in cerebral blood flow. Basically, blood has a hard time pumping to my head when I stand up, as my vessels move a lot slower, causing me to feel extremely dizzy and faint. Some people who suffer from POTS experience chronic fainting, which thankfully I have only experienced once or twice. I have also been told by several doctors that POTS can cause chronic migraines, something I have encountered quite frequently within the past few years. On top of POTS and my joint problems, I have also experienced a lot of stomach problems too. My body has a hard time digesting food, and I have been diagnosed with many stomach issues, the most prevalent recently being acid reflux. Alongside of that, a few doctors have told me I probably also suffer from fibromyalgia, a syndrome characterized by overactive nerves which cause pain throughout the body. EDS can also be very tough on girls, as typically girls do not obtain the muscle that a guy might to keep the joints a little more stable. It is also thought to be linked to hormones, and can sometimes affect girls in a different way than it can boys. Although all of these symptoms are hard, I think my biggest struggles have been lack of sleep and the anxiety that comes with EDS. Most people expect that I sleep a lot as someone with a chronic illness, but that is is completely false. Once I lay my head on that pillow, I find my body to be restless after it has worked extremely hard to get me through the day. It typically takes me a while to fall asleep, usually because I am in pain or restless, and once I get to sleep I experience long nights of waking up a lot due to pains or various other problems. I have tried many medicines to help me sleep, but so far I have not found one that seems to do the trick for me. And even when I do sleep, I find myself still dealing with chronic fatigue throughout the day. Anxiety wise, I can be extremely stressed when I experience a flare-up in my symptoms. It can be hard to try to lead an average life when dealing with chronic pain and exhaustion, and personally when I don't feel good, anxiety about what may happen sets it. Referring back to calling EDS "the moving target," it is hard to ever know what will happen and when. Sometimes I deal with a flare-up of symptoms for days at a time, sometimes weeks, and sometimes months. I have dealt with problems with discs in my back, issues with my central nervous system, and even little issues like dental problems. EDS can be crazy sometimes, and you never really know what direction it will take you in. Each case of Ehlers Danlos is unique, and while someone who has it may experience certain health problems, someone else who has it may not. The hard part about Ehlers Danlos Syndrome, like many other health problems, is that it can be extremely contradicting!! Sometimes a medicine may help me sleep, but then it makes my migraines worse. Other times I may sleep in a position to make my stomach feel better, and I wind up hurting my back. So while some of these problems may seem like a simple fix with medicine or a certain therapy or remedy, that is not usually the case. In no way do I list these symptoms because I feel sorry for myself, but I list them to help people better understand what someone who has EDS goes through on a daily basis. The sad part is, so many people who have Ehlers Danlos Syndrome go undiagnosed! To have this multitude of health problems and not understand why or where they came from can be confusing, frustrating, and exhausting. As someone who was blessed enough to get diagnosed early on, I can only pray that other people dealing with these symptoms can get diagnosed and get the help they need. I hope for those of you reading this I gave you a little better of a view on what exactly this syndrome can mean. Now you probably see why when people ask "what is EDS?" I go with the shorter version :)
If you would like to learn more about Ehlers Danlos Syndrome or if you would like to donate to help fund EDS research, please visit http://www.ednf.org. Right after I got diagnosed with EDS and figured out I could not play volleyball, I truly was devastated. I felt like I was missing out on something beyond myself, and it was one of the worst feelings in the world. I knew God was there, but I was not happy with Him. I had grown up going to PSR (Catholic Sunday school) and had always heard that God loved me from my parents, but I was still pretty mad at Him for punishing me- an innocent Christian- for doing nothing wrong. I always played by the rules (or at least I thought I did). I got good grades, didn't drink, didn't smoke, didn't do "bad stuff." I remember hearing about Young Life in the beginning of the year, and thought it sounded okay, but I had volleyball every night and didn't have the time to go to YL events and do my homework after practice or a game. Now that I wasn't playing volleyball I really had no excuse not to go except I knew nothing about it. One day my best friend Lydia and I were at my twin brother's YMCA basketball game when a senior girl from my high school walked up to us. Terrified because we were just freshmen and she was a senior, we watched as she plopped down next to us and began to ask if we went to Liberty High School. She explained that her name was Madeline, and she assumed we were freshmen so she came over to talk to us. Confusing, right? Why would a senior girl care about some random freshmen? After that day Madeline began reaching out to us and eventually invited me to Young Life. She had been friends with a Junior girl Mallory, who happened to be the daughter of some of my parent's closest friends. Because my parents knew Mallory, they allowed me to go to my first Young Life club with two senior girls (something any freshmen would be incredibly excited to do). I remember feeling so cool that two upperclassmen wanted to hang out with me, and even better genuinely wanted to get to know me. The rest was history. I began attending Young Life club meetings on Mondays where we played fun games and sang and watched funny skits, and Campaigners on Wednesdays where we dove into the bible and had real conversations about who Jesus was and what He meant for our lives. My sophomore year I even joined a small group led by one of my awesome leaders Ruthy. Throughout the rest of high school I continued to go to Young Life every week. When I was able, I attended events such as Fall Weekend and camp, times I can truly say were some of the best of my life. I still struggled immensely with my health problems, and even ended up missing over 100 days of school my junior year and my senior year. Throughout those years though, I found comfort and fellowship through the opened armed community of Young Life. I learned how to make lasting relationships with people, not the crappy friendships you make in high school just because it's convenient. I was loved so well by the leaders and the older kids around me in a way I had never experienced. No one there cared if I played a sport or if I missed almost every morning of school. I found myself feeling motivated to get out of the house on days when my body was in pain, and even better, I found myself learning more about God then I ever had before. Young Life taught me that a relationship with God is something that is personal. Being in a relationship with God is a living, occurring thing. Yes, Jesus died on the cross but He rose again! When He took to the cross He took all the weight of our sin on His shoulder, and wiped our souls clean. When He rose, He became alive and validated that He is in fact a living God that we can be in touch with. Before I went to Young Life, I thought God was just a man in the sky that I prayed to each night. I thought that He got mad at me when I messed up and that He loved me more when I didn't. Through Young Life I learned that that is completely false. In reality, we are all sinners, all hypocrites, we mess up every single day. Yet, God loves each and every one of us equally, and nothing we ever do can make Him love us anymore or any less. If He did not love us so unconditionally, He would not have sent His ONLY, PERFECT son to the cross. Romans 5:8 says, "while we were still sinners, Christ died for us." He didn't die for us when we were perfect! He died for us when we repeatedly screwed up and turned our backs on Him. The way my Young Life leaders and fellow peers in YL treated me was such a good representation of this crazy love. We are all called to the mission of loving others and spreading the good news of God's truth. Although no human will ever come close to loving me as much as God, the way I have been loved through Young Life is such a picture of the way God wants us all to love. Yes, Young Life has flaws, as does every single person or organization on this earth, but it brought me closer to God and brought me friendships that I can truly call eternal. I am currently in training to become a Young Life leader at a high school, so I can hopefully impact kids through Young Life just as it impacted me. When I look back on my freshmen year of high school and my anger towards God, I laugh a little at His irony. The best thing that ever happened to me was getting diagnosed with EDS, because without it, I never would have been able to attend Young Life and learn what it truly meant to follow the Lord.
"We love because He first loved us." 1 John 4:19 If you would like to get involved or learn more about Young Life please visit www.younglife.org When I first got diagnosed with Ehlers Danlos Syndrome I had absolutely no idea what it was. I remember I was 14 years old, a freshmen in high school, and I had come to see a genetics doctor after experiencing three sports seasons of consistent injury. In middle school I had played basketball and volleyball, always somehow managing to break a finger or dislocate a shoulder what seemed like once a week. When I had finally arrived in high school, I decided to stick with volleyball, something that I thought would keep me in shape, get me friends, and keep my high school status up to par. I soon found myself with none of these things, as I endured a long season of constant injury which lead me to major anxiety, loneliness, physical pain, and a disconnection I felt with the people around me. People on my team began to call me a hypochondriac, because it just did not seem possible that someone could be injured that much in one season. On top of the injuries and insecurities due to the people around me, I dealt with a variety of other health issues like stomach problems and a low immune system. Realizing something was not quite normal about my constant battle with injury, my parents began to search for answers. I went to a plethora of doctors looking for things such as bone brittle disease and arthritis, neither of which seemed to be an explanation for my fragile body. My medical case was chalked up to be unlucky, a series of unfortunate events, even deemed a random coincidence. Just when I started to believe I would never find an explanation, a family friend recommended I see a geneticist. Ah ha. After going through my medical history and examining my joints, the doctor diagnosed me with Ehlers Danlos Syndrome, a genetic connective tissue disorder due to lack of collagen in the body. I had received so many injuries because my joints did not possess the tissue needed to protect them from overextending. A big part of my case of EDS is hypermobility, an increase in the range of motion of parts of my body. It made sense, the doctor explained, that a high impact sport like volleyball would be a nightmare for someone with my condition as the contact with the ball, the constant bending forward, and the overextension of arms causes extreme amounts of stress on the joints. The doctor also explained that a lot of people go their entire lives without being diagnosed with EDS, leaving them to be labeled as hypochondriacs, dramatic, or even mentally ill. I knew I was blessed that my case was discovered early; people who don't get diagnosed until later in life find many complications with their bodies due to the lack of knowledge in earlier years that they should be extremely careful with their bodies. While I was relieved that there was finally an explanation for my condition, I was devastated to find out that volleyball, or really any sport, was an unfit activity for someone like me to be participating in. At this point in life I was determined to beat the odds, and work really hard to make volleyball work. I felt that volleyball "defined me" in a way, and without it I would lose a part of my identity. I wasn't amazing at it, and I knew that, but I also knew when I worked hard at something I could get better and better everyday. It seemed so unfair that all of the hard work I had put in to make the team would leave me with one season of mostly bench sitting and a lifetime of playing little to none. I weighed my options and decided to try for spring season, one that was abruptly cut short after a dislocated thumb in my very first game. I got very upset with God, mad that He would do something like this to someone who prayed to Him every night and always tried to do the right thing. One night as I was crying and my mom was consoling me I said, "mom, why is God doing this to me?" In that moment she told me something that has always stuck with me, "Gabrielle, I don't know why you are going through this but what I do know is that God has a plan."
If you or someone you know is experiencing symptoms such as joint instability, chronic musculoskeletal pain, frequent joint dislocations and subluxations, skin abnormalities, or if you would like to donate to help fund EDS research, please visit http://www.ednf.org. This first post is going to be a short one, but I wanted to talk about why I decided to start my blog. Recently, I have dealt with all of the typical life changes a freshmen in college goes through. I experienced being on my own for the very first time; a phenomenon a kid dreams about from the first day they experience the teen angst of wanting to do what they want, when they want. Four years prior- my freshmen year of high school- I had been diagnosed with Ehlers Danlos Syndrome (EDS), a rare connective tissue disorder caused by lack of collagen in the body. Even though high school for me was characterized by doctors appointments, new medical discoveries and diagnoses, and the battle of a sickly body, I always had hope that college would be different for me. I expected my first semester in college to be "my time," a place where I would be free to do me and finally have all my health issues under control. However, after just two weeks in college my world was rocked when I experienced one of the worst flare ups in my health problems I had ever gone through, one the I still am dealing with today. I was quickly reminded that this is not in fact "my time" nor will it ever be. What you can expect from this blog are posts about my life as a freshmen in college battling with EDS and Anxiety Disorder while humbly experiencing the daily graces of a loving, providing God.
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