July 4th, 2016. We pulled down my street and I leaped out of the car before it could even come to a halt. Tears streaming down my face I ran through what seemed like a decent crowd of people. Firetrucks blocked my view until there it was. My family's beautiful home with firefighters all around, ripping off pieces of the roof, banging through walls, making sure the fire hadn't spread. I first made sure my dog was safe. She was, grass sitting, tail wagging. I then looked up and saw my room. Out of my window spewed clouds of smoke. All I could think is, we're screwed, I'm screwed. I began to assess what I was probably about to lose. My clothes. My baby blankets. My treasured moments. My grandpas sweater and the necklace he got me. My bible. The list was endless.
July 4th, 2016. We pulled down my street and I leaped out of the car before it could even come to a halt. Tears streaming down my face I ran through what seemed like a decent crowd of people. Firetrucks blocked my view until there it was. My family's beautiful home with firefighters all around, ripping off pieces of the roof, banging through walls, making sure the fire hadn't spread. I first made sure my dog was safe. She was, grass sitting, tail wagging. I then looked up and saw my room. Out of my window spewed clouds of smoke. All I could think is, we're screwed, I'm screwed. I began to assess what I was probably about to lose. My clothes. My baby blankets. My treasured moments. My grandpas sweater and the necklace he got me. My bible. The list was endless.
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In honor of Rare Disease Day, I figured I would write a post to try to help explain what it is Ehlers Danlos Syndrome really is.
The best way I can explain my body is by describing what my mornings look like. When I woke up this morning my entire body was in pain. Last night was restless, like always, and getting my body to relax was no easy task. My head is pounding and it's hard to motivate myself to get my body moving. Sometimes I like to explain it as I feel like I was hit by a truck (although that might be a tad dramatic). As I try to standup my whole body aches. My legs are a wobbly and I feel slightly dizzy. I go to brush my teeth and my hands and fingers feel stiff and sore. I open my pill box and take my few medicines for the day and pray that my body stays like this, rather than get worse. This is a small and mild snapshot into the life of having a chronic pain disorder. Ehlers Danlos Syndrome (EDS) is a rare, genetic, connective tissue disorder thats due to lack of collagen in the body. Collagen is what holds your joints together, so if you don't have a sufficient amount, your joints are weak and lose. This causes you to be prone to injury and to have chronic pain. While chronic pain is a big part of EDS, in my experience, EDS has affected my entire body. My doctor likes to explain me as my "central nervous system being out of whack." I suffer from stomach issues, throat issues, head issues, etc. Getting even a small common cold can keep me down for days. EDS is completely random, never warning you when you may have issues and with what part of your body. Sometimes I have good months, sometimes good weeks, and sometimes good days, but somehow something always sneaks up on me. There are many different types of EDS, and from what doctors have told me I'm a crossover mostly between classical and the hyper mobility type. My biggest struggle with having EDS has been the fact that it is an invisible disease. I may look fine or seem fine on the outside, but it doesn't mean that I'm not in pain or that I don't feel well. Days like today, that help me share awareness about my disease, are days I don't want to take for granted. While rare, my disorder affects many people, and being understood and even getting diagnosed isn't always the easiest task. I thank God that I was diagnosed when I was 14 and could take the measures I needed so that I may prevent certain damage to my body and could learn how to best handle my situation. Many people go their whole life without getting diagnosed, causing them to be misunderstood, labeled as hypochondriacs, and causing them to badly damage their joints. It is extremely hard to live with an invisible disease, because while you want people to know what's going on and how you feel, you don't want to complain or seem like a baby. And even when you do explain, it's hard for people to understand. I think the biggest thing that God has taught me through having EDS, is something we all struggle with. While someone else may not have been diagnosed with my invisible disease, we all have them, invisible diseases. Whether it's a mental disorder like anxiety, or struggling to feel like you fit in, or even feeling unloved and lost, we all have an invisible disease inside of us that no one else can see. I think knowing this I have felt called to share my story. So often we judge people, we label them, we criticize them, yet we don't even know what's truly going on inside. If you're a person who thinks it's impossible for someone to hide things without showing any signs on the outside, then I'm here to tell you that I think you're wrong. If you read this post, I ask a few things of you. Please try to have compassion towards others. Please do not judge someone from their outside appearance. And please pray for the community of people who have yet to be diagnosed with EDS or another rare illness, because those people are suffering and don't understand why. As hard as having EDS is for me, I wouldn't change my life. God has revealed Himself to me in crazy ways, and experiencing His healing power has made me a stronger, more trusting person. I have learned how to deal with my anxiety through my health issues, and I have learned what it looks like to truly care for others despite what is going on inside. Happy rare disease day! I can only hope that this post can a little glimpse of what Ehlers Danlos Syndrome is so that we as people can be more aware, more proactive, and more understanding. I first started this blog in January 2015. And here we are, a year later. A lot has happened to me within the last year, and it all started out with a throat ache.
Last January I found myself in a unique situation. Yes, I was your typical freshman in college with one semester under my belt, but my "college experience" wasn't exactly what I had anticipated. At this point, we were two weeks into the second semester, yet my dorm room was now the house I grew up in, my classroom was my laptop, and my professor was my doctor. I spent my Friday nights- well.... all nights.... And days.... - in bed trying to find enough energy to send a simple text message. The time I would've spent drowning in homework was time spent drowning in anxiety. The "freshmen 15" was still the "freshmen 15" but instead of gaining pounds I lost them. My diet consisted of the only thing I could keep down, KFC mashed potatoes (lol I know). I saw my friends yes, if they came to my house and didn't mind being my couch potato companion. Date nights turned into, "so, which movie should we watch tonight?" This time last year everything seemed impossible. I couldn't drive a car, couldn't walk more than the length of my driveway, couldn't even leave the house without feeling like I was gonna die. And all of it started with a trip to the ER because my throat hurt so bad. My life consists of a lot of "when's." When I feel better then____" or "when I'm less busy then___" or even "when I have more energy then___." I'm constantly saying when this, when that.
I think a lot of times it's easy for me to put my hope into when. Specifically when I will feel better. Having Ehlers Danlos Syndrome, my life is a myriad of unpredictable health issues. I never know what will happen to my body or when. Typically when one health problem gets figured out, another one arises. It's kind of like aiming a dart at a moving target... while blindfolded. It's easy to feel discouraged when it comes to a slow recovery. It's been almost 6 months that I have been dealing with the worst flare-up I have ever had. My throat and stomach issues have been persistent and frustrating, and I have yet to experience a complete break of the symptoms. Although I am still experiencing discomfort, I cannot ignore the fact that I am significantly better than I was. When I think back to January, I remember the extreme daily throat pain and complete lack of energy I had. After spending some time in the ER, I was diagnosed with the flu- a virus that my low immune system and weak body had a hard time fighting off. After countless doctors appointments and medical tests it was decided that the flu had left me with severe pharyngitis, an infection of the throat. I stayed in bed for almost a month, completely confined to my house besides doctors appointments. I was forced to move home from school and drop all of my classes other than my online calc class. I didn't really spend time with friends other than the occasional short visit. I never slept, hardly ate, and felt like the best part of my days was watching Friends on Netflix. As I gained a little bit of strength back and rid my throat of infection, I dealt with the lasting affects that the sickness had left me. February was characterized by my struggle of anxiety and symptoms with no explanation. I tried hanging out with friends, but usually found myself lasting only an hour or so before I felt sick and exhausted. Being out of the house for long periods of time made me anxious. I was improving a little bit throat wise, but still had difficulty swallowing and constantly felt like my throat was closing up. I managed to do some fun things, but for the most part still felt sick. At this point I hadn't driven a car in probably 2 months. By the time March hit I was dealing with a whole new set of issues. My throat discomfort was still prevalent, but now I was experiencing stomach pain and nausea. Almost every time after I ate I threw up, although I wasn't throwing up food, but what was thought to be bacteria from my stomach. I still had a hard time swallowing, especially thin liquids. A lot of times I ended up spitting out water after I drank it. I went to anywhere from 2-3 doctors appointments a week. I ended up having some testing done that revealed I was allergic to some foods and highly allergic to dustmites, with hopes that this would maybe explain some of my throat issues. I also found out I was highly malnutritioned, and extremely deficient in categories such as magnesium intake, Vitamin D, B vitamins, etc. I also had an endoscopy done, which came back clear. I was able to venture out a few times a week and regained some normalcy. I struggled to wake up for my online class even though it didn't start until 11 am. I was sleeping half my day away but at least I felt like an actual person. I began driving again for the first time in months. I also began my involvement in Young Life again, as I became a leader in a high school. April brought trial and error. I tried different digestive enzymes to allow myself to eat, different probiotics to settle my stomach, and Vitamins of all kinds. I was frustrated with the slow process of waiting for meds to kick in and vitamins to build up, but each day I felt a little better. I left my house every day and was able to spend time with friends as long as I didn't stay out too late. I went to Young Life events at least 2-3 times a week. By the time May hit I started living a lot more normally. I was eating a least two meals a day and was gaining back more energy. I still continued to deal with consistent throat issues but my stomach for the most part was on the road to recovery. Some weeks I wouldn't throw up at all, and then all the sudden I would experience it all over again. The relapse in symptoms was frustrating, but they lasted a lot less longer than before which helped me keep my head up. I was back to being more independent and leaving the house every day. I was able to finish my online calc class and receive 5 credit hours for school. My anxiety, however, tried to get the best of me. Fear of my throat closing up kept me from doing things, but my pain became less pain and more discomfort, and I began to feel that I was finally on my way to where I wanted to be. Now here I am, June coming to a close. Most days I still feel frustrated. My throat always seems swollen or irritated or painful. At least once a day I feel like I'm going to throw up. I fatigue easily and get anxious when my symptoms flare. I still have a long way to go before I go back to school and move on campus, but I'm better. Much better. It's crazy to me that 6 months ago I laid in bed for weeks. I didn't even drive for 3 months. I had days where I wondered if I'd ever catch a break, if the pain would last so harshly for so long. When this flare up started, for the first time in my life I got mad at God. I didn't understand why I had to suffer this much for this long. I didn't see "the light at the end of the tunnel." I couldn't fathom feeling better. In fact, I felt so awful I didn't think recovery was possible... But it was. I will never know the exact reason why I had to struggle so badly this year. I will never know why I'm still not 100% better. I will never know why I have to live life with the incurable syndrome of EDS or why I get sick so easily or why a little spark causes my body to ignite. What I do know though, is that God can get me through anything. He is good and He can heal. He has taught me patience in healing, though. He has taught me that He hears me when I pray. He has taught me that even in the darkest of darkness, there is always light, there is always hope. "We have this hope as an anchor for the soul, firm and secure." Hebrews 6:19. I've learned to lean on the people He has so graciously given me. I have learned what it means to be compassionate, understanding, and a good friend by letting the people I love take care of me. I have been humbled, served, healed, lifted up, and loved in a time when I was sick, helpless, hopeless, and frustrated. I have learned how to know when my body needs a break, how to budget my time, and how to cancel even my most exciting plans. The past 6 months have been some of the hardest of my life. Physically, emotionally, and mentally I have been beaten down. Yet, I've grown more than I ever have. I've learned more about life in the past few months than I have in the past 19 years. And for that, I thank God. I am not afraid of not being able to handle things because I know what He promises me in Philippians 4:13, "I can do all things through Christ who strengthens me." My good friend and fellow Young Life Leader, Vinnie Posteraro, once told me that no matter what we do in life, God is going to teach us something, we just have to be willing to be open to His plan. "You are exactly where God needs you to be," he said.
This week I've been been experiencing something that my friends and I like to refer to as "fomo," or fear of missing out. The high school that I lead Young Life at is currently at Timber Wolf Lake, a Young Life Camp in Lake City, MI. My team along with about 100 high school kids are experiencing a week of a lifetime, while I'm here at home feeling a tad alone and stuck. It had been about 6 months since I had slept somewhere other than my house; no vacations, no weekend trips, not even one sleepover (unless you count staying at my aunts house, in which feels more like a second home than foreign territory). My recent flare up in health issues had left me confined to home, symptoms keeping me from feeling like I had the strength to travel, anxiety keeping me from feeling like I had the ability to leave. So this past weekend when I was invited to go to one of my favorite places on earth, Rockbridge Alum Springs, a Young Life Camp in Virginia, you can only imagine the debate that entered my mind about whether or not it would be a good idea to go. I am a volunteer leader for Young Life, a relationally focused, Christian outreach program in which I was placed this past March at a local high school in Columbus. It is my absolute favorite thing to do and this weekend I was invited to join hundreds of other leaders from colleges around Ohio to come to leader weekend, a time in which we could refocus, see friends, and talk about ministry. I had the opportunity to attend last year as a high school senior, and it was my favorite weekend out of the whole year by far. So the past few weeks when I realized that it was coming up, I experienced mixed emotions on my decision to go or to stay home. Rockbridge is about a 6 hour drive, and while the weekend is extremely fun and the camp is extremely beautiful, it is also extremely tiring. Although a lot better than I was even just a month ago, my body is still not in amazing shape. Ehlers Danlos Syndrome almost always causes me to be lethargic, low on energy, and in some pain, but my recent battle with throat and stomach issues on top of these chronic symptoms hasn't left much room for mercy. I knew I wanted to go to leader weekend, but my anxiety told me I couldn't do it. You're not strong enough. Something bad will happen. You won't be okay. Home is comfortable. Don't leave. Every time if asked if I was going to leader weekend my answer changed. "Yeah for sure!" "Maybe, I don't know yet." "We'll see." "Eh, probably not." I knew I would be able to bring my medicine, do what I needed to do if I didn't feel well, and ask people for help, yet my anxiety told me to stay where I was comfortable. After a little bit of counseling and a whole lot of conversations, I decided it was time to go, it was time to fight my anxiety and sickness, it was time to be a normal person. So Thursday morning I packed my bags and awaited our departure the next day. I was fine all day until night hit. The anxiety came creeping in and the bad thoughts consumed me. That night I cried for three hours. I'm tired. I don't want to go. It's too much. I can't do it. After reassurance from friends and my YL teammates that no one would be disappointed in me if I couldn't go, and I could stay home if I needed to, I was sure I wouldn't go. I went to sleep that night crushed that I would be missing out on something I wanted to do and wanted to experience with my friends, and my Young Life team. I prayed for peace, I prayed for guidance, and I prayed for rest. When I woke up on Friday morning I felt a calm wash over me. I got out of bed and began finishing packing. I showered, got dressed, took tons of medicine, and headed out the door. I decided I was going. I decided God would provide for me. I decided to fight my fears. So off we were to Goshen, Virgnia. This long weekend brought trials and triumphs of all different kinds. I found myself in situations where my anxiety was great and my pain was greater. Every morning I woke up sore, sick, and sleepy. Every night I laid in bed wondering if my body would rest or if the pain would keep me up. Sometimes I hated the fact that at times people had to take care of me, but I was humbled by the fact that I couldn't do it on my own. Every time it seemed like too much, I still got through it. Every time I wanted to go home, I looked around and saw the beauty of where I was. The way I was served this weekend was like something I have never experienced. People dropped what they were doing when they saw I was struggling. People did whatever they needed when they knew I needed help. People prayed for me, people hugged me, and people loved me like crazy. This is a kind of love you only experience from people who know a greater love than that, from people who have everything in common, from people who love Jesus. The things I got to hear this weekend were just as crazy as the love I experienced. We listened to two speakers; Mike Kramer and Tammy Smith. Every word that they spoke I clung to as closely as I could. Mike talked about how God is outside of the paradigm of time; He looks at us and doesn't see past, present or future, but He sees it all at the same time. When He sees us mess up, He also sees it's already paid for. He knows what happened, what is happening, what will happen. I sat there with heavy eyes and an even heavier body, but my mind was freed and lightened being reminded that God is all-knowing. I asked myself, why do I lack trust that I will be okay, when I know it is in the hands of a Father who "even the wind and the waves obey?" Tammy talked about how our circumstances create lies that we believe, which causes us to have certain insecurities or struggles. She reminded us that we can say no to the lies; God lives within us therefore we have the power to refute the lies with truths that He provides us, truths from the bible. When a lie surfaces, we must be able to combat it with the truth. We have the ability to say no to lies, to remind ourselves we are God's children and that He guarantees us help, love, peace, and everything in between. When I believe the lie that I'm not going to be okay, I can remember that I can cast all my anxieties on Him because he cares for me (1 Peter 5:7). When I believe the lie that I can't have good things, I must remember that the Lord works for the good of those who love Him (Romans 8:28). When I believe the lie that my body will never get better, I must remember that one day He will restore me (Revelation 21:4). It is now Monday and here I am, safe and sound at home. My body is in pain, but my mind is at peace. Four days ago I didn't think I had the strength to leave my house. I believed lie after lie that I couldn't do it, that God wouldn't provide for me, and that I wasn't ready to leave. This weekend reminded me that "I can do all things through Christ who strengthens me." Philippians 4:13. I was physically, mentally, and emotionally tried, but here I am, okay and safe. How crazy is it that God called me out of my comfort zone, and ultimately provided? I may have experienced exhaustion, pain, and stress, but it proved true that wherever I go, the Lord will follow. I may not be physically in a position quiet yet where I can do things like climb mountains or survive on little sleep, but I will always have my God with me and He will always take care of everything I need. If you struggle with fears or anxiety and are afraid to do something even though you know you want to, I encourage you to step outside of your comfort zone. It may not be easy, but I can promise you that if you know that God will never leave or forsake you (Deuteronomy 31:6), He will take care of everything you need. Don't let your fear hold you back, even if it's something as simple as staying a night away from home. If you would like more information on Young Life, please visit www.younglife.org If you would like to check out our worship experience this weekend, you can find it at https://grahamfamilyband.bandcamp.com Three times I pleaded with the Lord to take it away from me. 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. 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
Today this verse is speaking to me loudly. I have felt as if I am drowning in my weaknesses lately. I feel like I have these burdens that I'm constantly asking God to take away. School feels like a burden. My grandpa being so sick feels like a burden. My constant tiredness and chronic pain feels like a burden. Having to cancel my trip to California seems like a burden. I'm overwhelmed, I'm tired, I want a break. I am constantly asking "why, God?" "Why me?" "I'm a good girl!" "Can you take away the bad stuff?" "Please?" Sometimes I feel like there's no response. But then I remember this verse. HE said to ME, my grace is sufficient. My power is made PERFECT in WEAKNESS. He said that. I hear that, yet some days I still find myself drowning in weaknesses, trying to cover them up the best I can so no one will see. I want people to think I'm doing great 24/7. I want to have a life people want. I don't want to be "weak," yet scripture says I'm supposed to take pride in my struggle... It seems like a weird concept to boast about weaknesses. We are taught at a young age to be a "strong" people. Be brave. Be fearless. Be independent. Don't show weakness. Don't let them catch you when you're down! The problem with this is this is not realistic. Not one of us is 100% fearless or 100% brave. We can't be. We're not perfect. We all have flaws, baggage, fearful thoughts; some shown more outwardly, others hidden deep within. What would it be like if we all started boasting about our weaknesses? What if we were proud of our struggles? What if we used our hardships to illuminate something that's bigger than ourselves, something that everyone needs? I think this verse is a call to be honest with ourselves and with each other. I talk about my struggles with my health, my anxiety, and everything else because they are true. My shared thoughts on my pain is raw, reflective, and real. If we were made to hide our weaknesses, we would have none. Without fear, we wouldn't know bravery. Without mourning, we wouldn't know joy. Without struggles, we wouldn't know triumphs. "For when I am weak, then I am strong." What a crazy, yet accurate concept. In what feels like my weakest moments, I find even the slightest bit of strength, and that's no coincidence. I will continue to delight in my hardships. I will use my difficulties to reflect God because at the end of the day He is the one who is bringing me strength, perseverance, and wisdom. Because I am weak, I become strong. Take ahold of my weaknesses, I am not ashamed. I have been made strong through what tries to rob me of that exact same strength. "You look really healthy and well!" Words I hear often. Surprisingly they're not comforting. Yes, I may be able to walk, talk, smile, etc., but that means nothing in regards to my Ehlers Danlos Syndrome. Almost everyday I deal with chronic joint pain, frequent stomach aches, head aches, throat pains, you name it. I recently have had trouble swallowing, digesting food, and even keeping down some liquids. I've had back aches and shooting pains. I am frequently tired, yet I can't sleep. Most days it's hard to get out of bed. But I still do. I still go about my day like anyone else. I try my best to do what I can. I drive, I study, I clean. I lead Young Life and I go to church on Sundays. I try to hang out with friends when I can. I generally look pretty normal. Some days, the people around me can tell I'm wiped out. I have bags under my eyes, I'm lethargic, I don't eat much. Other days, they may not know the difference because of the way I act. You see, my body likes to play tricks on me. I may seem extremely energized some days because my body overcompensates for being so tired by pumping adrenaline through my veins. I find myself uneasy and restless and sometimes even hyper. Excited by my energy burst, I start running around doing everything that I can before sickness rains down. At some point in my craziness, I hit a wall. I could be in the middle of jamming in the car to a song and my body just says, "nope, you're done." So, I'm done. When I'm with the people I'm closest to, I'm not very good at hiding it. When I'm with others, it's hard to be vulnerable about my pain. It's easy to tell yourself "just a little longer then you can crash." So I wait it out until I get home, where I collapse onto my bed and let the pain wash over me. Not all days are like this, though. Some days I'm just straight up tired. I try to go about my day, but I can be irritable and moody. I don't feel like myself, I feel like I'm giving people the crappy version of my personality! Other days, I feel pretty dang good. I'm able to brush off my pains as small annoyances and have a decently full day. These days can be hard sometimes but are still joy filled and fairly active. And occasionally I feel wonderful. I love when I get to experience gifts like these days. There is always some kind of pain there, though. I can't really remember the last day I was pain free, but that's just EDS. It can be discouraging sometimes, but I've learned to let it grow me. I know if I smile my day's going to be a lot easier. If I communicate, people might be more equipped to understand. If I find joy even in the smallest of things, I can enjoy the worst days. If I give people grace, I will remember the grace that's been given to me so much more. I choose not to act sick 24/7 because I know that being sick doesn't define me. I have truly learned that not one of us can judge the other. Who's to say that I feel well because I look well? Who's to say I must be having a pain free day because of how I'm acting? No one. We cannot judge others because we are not all-knowing. We will never know fully what someone else is going through on the inside, and that's where God comes in. He meets us where we're at, He feels for us, He understands us where we cannot understand each other. He knows my EDS better than I do. He knows me better than I do! So who am I to judge? Who are you to judge? People suffer with invisible illnesses everyday. Please do not judge someone because you truly do not know what they're dealing with. It could be EDS, it could be another health problem, it could be a mental problem, or maybe even a personal matter. If anything I said in this post tugged at your heart, try to let joy overflow you rather than judgement. I know we are taught to judge. I also know I struggle with the constant desire to judge every day. I see someone and my immediate thought is "they must be like this" or "I totally know what they're about," when in reality I don't know them at all. It's crazy how our natural reaction has become to judge what's in front of us! Having EDS has led me to try my hardest not to judge others because I know that my body doesn't always show on the outside what's actually going on inside. If you find yourself in a moment where you can consciously decide not to judge, think hard about it. Trust me, I am a walking cliche of "don't judge a book by it's cover." So look a little deeper, think a little harder, before you pass judgement on someone else. Choose joy, not judgement. “Do not judge, or you too will be judged. For in the same way you judge others, you will be judged, and with the measure you use, it will be measured to you." -Matthew 7:1-2 “I am the good shepherd; I know my sheep and my sheep know me..." -John 10:14 Great is our Lord and mighty in power; his understanding has no limit. -Psalm 147:5 "Stop judging by mere appearances, but instead judge correctly.” -John 7:24 If you would like more information on Ehlers Danlos Syndrome please visit http://ednf.org If there is anyone who taught me how to be strong in dealing with chronic pain it is my grandpa. For a few years now my grandpa has been suffering from an illness called Scleroderma. Scleroderma is caused by too much collagen in the body rather than EDS, which is caused by lack thereof. There is currently no known cure for Scleroderma, and while there are ways to try to slow it down, there is nothing doctors can do about the progression of the type of Scleroderma my grandpa has. Everyday my grandpa has dealt with more and more hardening throughout his body. Like me, he deals with chronic pain, his pain being a lot worse than mine. Although his body is giving up on him, you would never know it. I have never seen a person so determined to continue to live life in dealing with such a terrible illness. Although his hands hurt and are hard to use, he continues to go to work every single day. Although it probably hurts him to talk, whenever I call him he always answers his phone. And although he could choose to sit at home or a hospital all day, he pushes through so he can live life. The way I watch him perservere is motivation from someone like me dealing with a chronic illness to even get out of bed everyday. My grandpa is one of the most inspiring people I have ever met. When he was just a young boy he came from Italy to America to make a life for himself and for his family. He worked hard so that he could live a better life, and he's not giving any of that up just because he is sick. I want to live with EDS like I have watched my grandpa live with Scleroderma. I want to enjoy life as much as I am able to. I want to continue to pursue things I am passionate about even when dealing with pain. I don't want to let my illness own me, define me, or hold me back. My grandpa is now dealing with some of the worst affects of his disease. Each day his body loses more ability to function, but I know that through this he will never give up. I cherish each day that I get to see him perservere. I know that he wishes he could do so much more, but to me what he does already is more than inspiring. Because of my grandpa I am reminded each day that "I can do all things through Christ who strengthens me." Philippians 4:13. I am forever grateful for the determined, hard working person that my grandpa is, and he will continue to be on my heart everyday no matter what happens. I love you, grandpa. "Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us." -Romans 5:3-5 If you would like to learn more about Scleroderma please visit http://www.scleroderma.org |