Life is a gift. A very precious gift. You only get it once, so you have to live it to the fullest.
Having lived with a chronic illness for 2,494 days and counting, I look at life a bit differently than most people my age.
Life is a gift. A very precious gift. You only get it once, so you have to live it to the fullest.
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So the first part of the week was relatively good. Pain was pretty low, and I had a lot of fun things going on. I thought the 6 would last! But I woke up this morning feeling something awful.
It's like all the symptoms of RSD and Fibro started attacking me the second I woke up. Pain is at probably an 8 or so. maybe a little higher or lower. I'm too exhausted to figure out what it really feels like. I feel like I'm walking around wearing 12 parkas. The world is heavy, and everything seems to be weighing me down. I'm not really in a bad mood, just feeling awful. So I seem to be having an issue.
I feel so foggy. and confused. all. of. the. time. I attribute it mostly to my medication, Lyrica. It's supposed to be this amazing medicine to help chronic pain... So many people have had success with it. Except me. again. I don't feel like myself on this medicine. I feel like I'm watching the world go by... I'm trying to catch up, but I'm always a mile behind. It's like my life is a carousel. And I am trying so hard to jump on in and join the ride, but the Carnie (Lyrica) won't let me do it. I wish I could change that. I don't go back to my pain management doctor until April though. Joy. I guess I could try and get in with him sooner. But what's the use of that? He's told me I'm basically out of treatment options. I have had so many, and all of them failed. It's heart breaking. when your doctor looks at you and tells you flat out all he can do from now on is write you prescriptions? Absolute gut wrenching. But I keep hearing about these treaments i could do... liek Ketamine Therapy...I have had a few friends try that... Pain free for months at a time. MONTHS. not minutes or seconds like when I'm singing with IYC... MONTHS. Indiana doesn't offer Ketamine Therapy though. the closest state is Pennsylvania. Kind of an expensive trip. And it's probably worth it. But I also don't have time. indoor percussion? choir? piano lessons? voice lessons? volunteer work? school? homework sleep? I barely have time to breathe. Is this my life I'm looking at? Am I really looking at a life full of treatments? This life is excruciating. Every day that passes I feel worse. Worse. And Worse. And Worse. And Worse. When am I going to get better? I keep hearing, one day you'll get better, maybe not today, maybe not tomorrow. But one day your healing will come. And I know that. And I'm strong enough to wait for that. But it breaks my heart. I was talking to a good friend a few days ago... He has a Chronic Illness called POTS... We both agreed that since being diagnosed with these illnesses, we process life in a different way. We spend more time thinking about how things work, and look at the world in a much deeper way...
Chronic Illness also makes you realize how much you take for granted... Things like having enough energy to watch TV, being able to run around and play sports at free will, making it through percussion rehearsal, and even walking down the hall to your room are difficult tasks for people with chronic illness... With these illnesses, you lose a lot of things. My friend was a top ranked tennis player in the state, but ended up having to quit because of POTS. I marched saxophone in the Center Grove Marching Band my freshman year and absolutely loved marching, but decided to quit because of the pain it caused. Luckily, one of the things neither of us lost was our love and passion for singing. When we go to choir on Sundays, it's the one place we don't feel sick. For us, we can't escape the malaise. Some days, he is extremely tired and fatigued, and I'm facing excruciating back and leg pain... and it's currently impossible to change that fact. But when we're up on stage with our choir, we're able to forget the sickness. We're no longer the community sickly child. We're no longer the one that's always in pain... Choir gives us the chance to feel normal... We're surrounded by music and all that it has to offer. We get lost in the lyrics, and the beauty of the melody. We are able to be free... we can ignore the pain and fatigue. No, that doesn't mean it just disappears. It's still there. It's always there. But it's a place where we can overlook the sorrow of chronic illness, and just be an everyday teenager.. I am truly thankful for this guy's friendship. He has helped me a lot... We completely understand each other on a level that few people understand. I am so glad God put such an amazing friend in my life... I am truly lucky to have met him, and I know that he will be a forever friend and Chronic Illness Buddy. :] When faced with boiling water [adversity]... "The carrot went in strong, hard, and unrelenting. However, after being subjected to the boiling water, it softened and became weak. The egg had been fragile. Its thin outer shell had protected its liquid interior, but after sitting through the boiling water, its inside became hardened. The ground coffee beans were unique, however. After they were in the boiling water, they had changed the water." Today in Creative Writing, we were handing a short story about a young girl feeling as though her life were falling apart. Her mother dropped eggs, carrots, and coffe beans each into their own pot of boiling water. The effects were as stated in the above quote.
We were then prompted with the question, "Which Are you? A carrot, an egg, or a coffee bean?" I believe that I am a coffee bean. I do believe, however, that I started out as a carrot. When I was first diagnosed with this pain, I went in really strong, assuring myself I could beat it. But through many years of failed attempts at recovery, I went through a phase in which I felt extremely hopeless and weak. Over the years, I have morphed into a coffee bean. I know now that I cannot be strong all the time - it will end in weakness. I can not change my phsyical situation, but I can change my emotional one. I have to use my experiences to influence the world around me. I've experienced a lot of dark days in my life... but I know that those days are what add color to my good days. Each day is a struggle. I learn something new about myself all the time. I can't change what happened to me. I don't know much of what will come in my future. All I know is that I have to keep pushing forward, and flavor the world around me as I go. "Don't wait until everything is perfect before you decide to enjoy your life. Learn to be content where you are, while you are on your way to where you're going." - Anonymous I came across this quote the other day. It really stuck out to me. I struggled with staying truly happy when I was first diagnosed with RSD. When I was diagnosed, I felt like I was drowning, and could not save my self.
It took me a while to come to terms with the fact that this illness may never go away. In my lifetime, there may never be a cure for RSD. But I have decided that I am not going to live my life suffering. It's one of these things where I may look perfectly normal on the outside. I do my schoolwork, I walk around in the hallways like a normal girl, I'm involved in numerous extracurricular activities, and I still hang with friends on a regular basis. But the pain is always there - there's a HUGE difference between happy and healthy. I have grown accustomed to making people think I am perfectly fine, when I am in more pain than most people can imagine. That's just how you learn to survive when diagnosed with RSD, or any chronic illness for that matter. Though I truly believe I need to remain happy, I still have rough days. I have days where I feel helpless. When the pain gets to about 18 on the 1-10 scale, I've heard it's somewhat acceptable to be upset. My life will always hold obstacles - everyone faces trouble. But this doesn't mean we all can't be happy. When something like chronic illness strikes you, you can't just draw a new card like in a board game. You're stuck with it. It will cause a lot of trials, but will also cause a lot of triumph. Chronic illness is hard to explain to someone who has never experienced such a thing. Chronic means there is no cure - you're stuck with it. Being diagnosed with chronic pain at 14 was absolutely terrifying.
I had been searching for answers for nearly three years when I finally got my diagnosis.. The pain started after I was in a boating accident 07/07/06. i had many surgeries, and saw many doctors before I was diagnosed. I was happy at first. Usually when a doctor tells you what's wrong, they can fix you. I thought I was done with the pain. I thought, "Ooh! There's a new medicine I can take that will fix me." Those 14 year old dreams were crushed when I read the papers the doctor gave us about Reflex Sympathetic Dystrophy Syndrome. I was speechless. My whole world stopped and turned upside down at that moment. I suddenly had this cloud looming over me, reminding me of the illness on a daily basis. When you have a chronic illness, it follows you wherever you go. It doesn't stop so that you can hang out with friends, and it doesn't stop so you can concentrate to complete your Algebra test. It's just there, stalking you. After a while, I started to join online support groups for RSD. I met a lot of really interesting people, they helped me get back up on my feet and push forward. This past summer, I started talking over twitter with some pretty amazing people. All of them also have RSD. Chelsea, Jenna, Abby, Natalie, Kara, Mary, Rachel, Shelly, Dave, and the Martinez family provide terrific support. If you looked at my twitter feed, you'd see a lot of joking around about RSD between my girls and I. This doesn't mean that we take RSD lightly - we just have to find humor in this pain to stay sane. All of us have said at one point in time that RSD can be your worst enemy, but also your best friend... I really do hate this pain. I don't understand why I am having to live with this. What I do know is, that it's all for some purpose. Without RSD I would not have met my RSD family. I really care about all of them, and while we all live far apart and have never actually met, I would do anything for them and know they would do the same. I should probably sign off for the night - I feel a flare up coming on. The weather has been out of wack here lately, I hope it calms down ASAP so I can go back to less pain. |
Megan Rae19 years old. Current sophomore at IPFW! Go Dons! :] Been fighting chronic pain for 8 years and counting. **Though I am writing about my experiences in the healthcare world, I am not a doctor or healthcare professional. I have no formal education in the medical field. Please discuss all information found on the internet (including here) with a professional in the required field. Remember, I am just a patient. These are my personal opinions**
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