Monday, May 13, 2013
With my birthday coming up, I find myself increasingly hopeful that year 18 will finally be healthy. It may be far stretched, but it's hope, and it's what people fighting illness need to hold on to. I've been looking into future options, one being working a part time summer job for only a few hours multiple days a week. It would be easier on my body and also keep me out and about. Another is to keep training horses to build my experience level and clientele for future training, instruction, and maybe even horse massage therapy. I've entertained the idea of moving in 2014 after getting my High School diploma. All these things, that I could shoot for if I just had a break. One thing I know for sure is that I'm on the IV treatment, that helps with my mental clarity so I can work on small amounts of schoolwork. I hope to definitely graduate in January of 2014. As for all the rest, I'm unsure how I'll feel and where I'll be going. My insurance runs out May of 2014, and that will leave me without medicine. In theory, a few more months of a strong IV should resolve the co infections and Lyme. I am praying that theory is on my side, because in October it will be six years since I came down sick with that unknown illness, causing the daily headache and body pain. Six years too long, and goodbye to the teenage years and the chance to live a normal time in my life, as I enter legal adulthood in 11 days. I enter the adult world with more experience and street smarts than many teenagers ever get. I have more medical knowledge, life knowledge, and personal knowledge than some people twice my age. I can speak in public, stand up for myself, be aware of my surroundings, take part in full blown medical conversations, and debate a subject strong enough to knock many people off of their feet. These are lessons it takes some people a lifetime to learn and practice, and some may never get to such a point. Lessons that will not be replaceable, and even through being sick I can be forever thankful for what I know. One day I will be a tool, used in the world to make things better with my position in my life. I'm excited to see the day where I can look back and say It was all worth it.
Friday, May 3, 2013
Aside from all of the school struggles I have going on with graduation nearing, I have many other setbacks that affect my life. I'm on IV treatment still, with a port in my chest. I get IV medicine (Clindamycin) for 30 minutes twice a day (so much better than the IV drip for 3 hours). I'm also on oral medications for multiple things. I am trying to get a small part time job yet again at Gunstock as a sales rep for the zip line and adventure park this summer, to keep me out and moving and making some gas money. Getting out in small bits is a great way to keep moving, keep positive, meet people, and still build a resume. Lymies have to keep moving! For me, being a social butterfly, meeting people and having friends to help me get out every once in awhile matters enough to lose some sleep occasionally, and push myself to dress up and head out to do something adventurous. Everyone has different things they should be doing to keep themselves positive and hopeful, and for teenagers it tends to be anything that makes us feel normal for a few hours. I am still trying to stay active with horses as well, training an arabian 30 minutes away who was once untouchable. I also stay active in church and I'm working on my guitar skills to be a worship leader in a church someday. Currently I am trying out different churches to find a good baptist church to call 'home' and go to once/twice a week for bible studies and services. All of this must make you question, jee she can't be that sick if she's doing all this? I must say some days I don't know how I do it, where the strength comes from, why I keep pushing. Even though I wake up everyday with pain shooting down my body a thousand times before I even move, radiating through my neck, hips, and legs mainly. Even though I struggle with random headaches throughout the day, sometimes so bad I can't do anything but crawl back into bed and pull the covers over my head. Even though I lose friends because one minute I'm fine, and making plans, and the next I have to let them down and be unreliable because I can't drive or have to do medicine. Even though I push myself sometimes to the point of losing my ability to walk, talk, think, etc. Even though I can't complete schoolwork because sometimes I have the math level of a 5th grader and forget anything I have previously learned in a class. Even though sometimes I suffer from double vision, blurry vision, light sensitivity so I must wear sunglasses even inside or at night and not drive long distances. Even though some days I nearly pass out just standing up, and get so dizzy I have to walk slow with my hand against the wall. Even though sometimes I'm so nauseas that even my favorite food (ice cream) is repulsive and I could go a week without force feeding myself and just let myself wither away (to the point of losing large amounts of weight off my tiny body very quickly). All these things, alone, being things that would push any regular full grown adult out of school with a solid job and family of their own to want to give up, to cancel their plans, forget their dreams, stop pushing for better quality of life. Even through all of those things listed above, and then some, I still push. I don't expect people to understand why, how, when, where, none of the above. I do expect them to understand that everyone has a choice, even the hardest of circumstances we are left being a species full of decision making. My choice is to push, to aim for quality and fullness and not necessarily staying in bed every day all day waiting for treatment that might put the Lyme into remission while my muscles atrophy. I put a smile on my face and have a positive attitude because I have made the choice to be positive in the face of the greatest adversity. I pend nights crying and breaking down with pent up resentment because it is not easy, never was and never will be. However, through all things in my life, I push with the strength I get from God, my past experiences, the people I help on my path to health, and my families love for me. I hope everyone can read this and gain strength from it, keeping in mind they always have a choice and it won't necessarily be easy but it will always be worth it in the end. Nothing simple is worth fighting for, and nothing great is easy. 'The best way out, is always through.'
Took this picture in Upstate, NY. It was heaven on earth, a great escape.
Every day I wake up I think about graduation. I started kindergarten with a small class, a bunch of unfamiliar faces, a supportive family, and determination. I continued through school, gaining friends, achieving high grades, completing goals to work towards the inevitable future: college. Through my childhood I wanted to be a vet, it changed vastly over the years with different experiences. My grades never changed, all high A's along with the multiple extra curricular activities I was involved in. When 7th grade hit and I got sick, I still pushed through. All the way until 10th grade I was doing school online at home, still getting straight As with no tutor and pure struggle. In 10th grade I was fairly healthy for the first semester, and I got straight A's, ranked #8 in my class, and participated in alpine ski racing and student council. It was a good semester, still reaching for high goals of college and seeing the light in the future. The next semester ended with me in a wheelchair, unable to do schoolwork, severely neurologically affected by Lyme possibly due to a relapse or reinfection. It took me close to a year before I finished the classes I had been enrolled in online and started getting work done, but ever since I have had few weeks of clarity and memory to be able to get work done. It has been a constant struggle, even with a tutor helping me the past 8 months. Today I finished a course, still leaving me with 8 credits to get before I can get a diploma and walk the aisle with the class I have been with since my first day of school. Needless to say, with a month left that dream is gone and dead. Other dreams will bloom, I'm positive, but after a meeting with the school this week I don't see graduating through my high school at all being possible in the next year as they require many more credits than most schools do. I have started looking into an alternative diploma program aimed for adults and structured like a college course, in the next town over. They only require 20 credits to graduate, and I would be able to get the diploma by the end of 2013 and either work towards starting my initial courses at a community college or working towards another direction. The classes are at nights, one night a week per credit, and I will be arranging a meeting with the woman who runs it soon to figure out what I must do to meet the criteria needed to be done with high school. I will not give up and settle for a GED, I'm almost there! I have my family, friends, and more pushing me to be the best I can be and not let such an illness get me down, and with a volunteer credit and online classes, tutors when needed, a 504 plan for special accommodation, and some high hopes I work towards just being done with school. I may not have the interest in going to college like I once did,but whatever I do I will do good, with stride and pride as I know I have worked twice as hard as many to get there. Dedication and street smart can get you farther than debt and book smart any day of the week.