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.
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.
It's so hard for me to get on here and update sometimes. The Port has been in for 2 months or so at this point, and I'm not doing much better. At points my head is clear and I can do some schoolwork and at times my energy level increases enough to want to work, but this week in particular my lyme is cycling and stress this past weekend has me feeling pretty low. I'm taking my coartem this week, which is a once a month treatment that makes me feel terrible for a week. I'm also doing A Bart as much as possible which hasn't been a regular thing. I had my voice problems and some walking problems on Monday night, probably from over exhaustion. I have been pushing through to work my way up in Civil Air Patrol, start working on building my own hope chest (more like refinishing one) and also passing in some schoolwork and working my way up to a summer job in case I'm feeling better this summer. So there is plenty going on in my life, and im still struggling. Sometimes it makes you wonder how you are still sane, but one thing is for sure, God will prevail. Recently I prayed a bold prayer for a sign to tell me if I am supposed to be a worship leader or never sing in front of anyone ever again. Needless to say the bold prayers were answered swiftly in the most obvious way, I now have a George Thorogood signed electric guitar sitting in my room. So I'm praying that my upcoming 18th birthday will mark a transition in my 6 years of bad health, and that my adulthood will be freeing and healthy and full of love and good faith! Pray with me everyone, that May 24th 2013 be the difference in my life of pain and suffering, and that I will be surrounded by good luck finally.
I have not been on here yet again in a long time to give an update. It got so hard to type up a review of my life. The basic jist: I started with double vision along with worsened symptoms which was an all new low. The doctor decided that since I was basically to the point of being forced to stay home, not drive, not work, not do anything and suffering such worse symptoms it was time to treat more aggressively again. We decided to go with the port to avoid the clotting I faced with the PICC line and treat as aggressive as possible. I am on IV Zithro and Vancomycin right now. The Port placement is an actual surgical procedure. The create an inch incision with a pocket under the skin where the power port is placed, the line goes up over your collar bone and another incision is placed where it enters the jugular vein and then proceeds to the top of your heart. I am still healing a week later, slight discomfort from the tub over my collar bone which is visible. I had many complications with the procedure. The sedation did not work, I was wide awake, the Lidocaine did not work, Sensorcaine helped, I developed a histamine reaction to the radiation and was throwing up and red and itchy after the procedure, which Benadryl and Zofran helped. Now I am home and was hooked up to 8 hours of IV medicine yesterday, but we are working hard to manage that and get it down to a few hours a day. The needle which is inserted through the skin and into the port box underneath the skin stays in for the 5 days during the week goes in on Monday and out on Friday. Blood is drawn on Thursday, and Medicine runs multiple hours for the 5 week days. People have not been understanding of how home bound I am, but its not just being on IV medicine and having a port in that keeps me home bound. I Simply do not feel very well! I will still be trying work on Friday and Saturday night, and I will be able to get good showers in Friday nights and Monday mornings. This is y life, IV medicines, still on Oral Meds, constant nausea, double vision, unable to drive, stuck home during the week, and all trying to keep my head up.
Sometimes I wish I was a bear. Fighting the cold winter months with tough skin and a thick winter coat, able to last on just the built up Carbs from the previous season. Then my body wouldn't feel the cold affects of winter, and fight back. Every day I suffer the worsened symptoms of these diseases and conditions. Barometric pressure, cold temperatures, secondary illness from a lowered immune system, and working at a ski resort part time are all factors that make winter a miserable time for me. I have a lot going on in my life, with thinking about a career and juggling friends, work, school, health, animals, volunteering, and so much more. Opportunities are being brought up to me by the day, and I have to choose which ones are worth the fight to attain a better future. With all the stress of my life, its hard to imagine I can physically handle anything more without collapsing. However, on top of it all there is typical teenage drama that every one goes through at some point in their life with dating, friends, and lack of true friends. I'm finding myself living on a prayer, but I hope this year will be the end to that, and I can live freely for once since childhood. Six years of being sick is around the corner, and I just want it to all go away.
At my last appointment with my Lyme specialist about a week ago I was put on Levaquin, Zithromax, Omnicef and Coartem. This is a regimen that last year at this time when I was doing really well I was on, along with IV Rocephin that I had already been on for months. The problem is that last year before my concussion I dealt with some really painful Tendonitis in my elbows while working. This year, after just five days on Levaquin, I can feel it in my wrists and traveling up my arms. Its incredibly painful, to the point its hard to type and drive, and the side effects do list that as a concern. The doc switched me to a different medicine in place of that but I will probably be dealing with the lasting effects of the Tendonitis for a week or more. I still have to work, but I did end up taking a few days from work off so that I don't have to do four days in a row with extremely painful wrists. Now I just wait to see if it helps at all. In the meantime I just keep chugging, and trying to keep my head above water with all the current symptoms I'm facing. I do have a loving friend base to get me through this time and for that I am forever grateful. The New Year will hopefully bring new health and new hope and new love, and I am excited to turn 18, feel better, kick this Lyme and start a new life path to forever.
This is a picture that was taken of me a few years ago when I was feeling well.
Since the PICC line came out, every day has been a struggle. The medicines I am on don't seem to touch my symptoms, detoxing is a chore, and my stomach has grown so sensitive. I spend nights nauseas and mornings tired and sore. I search for answers to my questions inside, instead of reaching out. My depression is off and on since a recent break up, and I just keep smiling. How much strength it takes to look in the mirror and say to myself, 'None of it matters, you are beautiful, and no one can even tell you are sick! Now just convince yourself you aren't!'
If it only was that easy. Today was spent in the doctors office again, trying to decide about a case of what feels like walking pneumonia. The Physicians main concern is that liver inflammation can hurt just the same, and a cough could just be irritating a secondary problem. She ordered blood tests and a hundredth ultrasound and recounted how my lungs sounded clear even though they hurt like a helium filled balloon popping. Yet again, I recount how my life is never boring. So in two days I will get the ultrasound and hopefully know by Friday what is going on with my delicate body! I have been waiting for the approval and word of the local organization that is supposed to be supporting and assisting with the local teen lyme support group in order to get the email group started. It has taken a lot longer than it should have! I just hope they get started soon, because I am ready to open it up on my own accord and try it out to see if I can perfect starting good thread conversations. I just wish I had more patience and energy to undertake such a huge responsibility. This is why I need some support and help from healthy people! I should be on the radio the week of the WLNH Children's Auction( 98.3) speaking about partners in health and the Lyme Disease a little bit. Hopefully I can hear the voice clip before then because I haven't gotten any word on that yet either. Crossing my fingers! So this is the extent of my current situation, still struggling and sick without answers, growing new hope, meeting new people, starting my part time job again soon, and hoping to finish school before the end of the summer. I need serious prayer to get me through such activities so I can keep remembering I have a purpose and need to keep reaching out for it!
My life is never boring. This is something that I came to terms with years ago! After the blood clot healed I realize I still have some pretty frustrating symptoms and my health is definitely a concern. But I have been worse in the past, and I am not as concerned to stop everything I am doing to keep my spirits up. Getting out and continuing pushing through is good, I feel like it is mandatory to not succumb to an illness that for some can be deadly, for many disabling, and for all frustrating. I try to highlight the ups instead of the downs, so to speak. For my friends wondering how I truly am doing on the inside, I am having a hard time. Holding myself together has always been a challenge I've faced, and not one with an option of losing. I am a fighter, not someone who flees the scent of a solid challenge. Within the past few weeks I have driven myself into the honor guard through the civil air patrol and embraced my ability to teach and inspire 10 new members! I make it fun fr them as much as I can, because there is only so much fun we can live without in life. I share my passion of feeling the practice rifle whipping around my fragile body with the honor guard, and we all laugh and forget all our troubles. Our performance is Thursday night, the perfect chance after three weeks to show the world how these kids can do amazing things when lifted up! Carpe Diem!
Being sick is hard enough, but adding regular daily life struggles on top make it almost impossible. Right when I feel like cracking and just submitting to the pain and depression building inside, I concentrate that fatigue and pent up anxiety on a hobby, passionately fixating on it to give me a reason to flourish. This buys me the time until I can rebuild that confidence and keep swimming deeper into the blue unknown of my future. With college coming up and things vastly growing into new opportunities I find it hard to settle on the thought of being settled. After all, my entire teenagehood was spent struggling day to day, fighting for normalcy, and stressing myself to keep smiling. At this point I'm not ready for college, for life. I find myself in the position of many ill teens, I just want to live my life before it has to live me! I think daily about the chance to feel well for a week, and what I would do with it. For me it would be like winning the lottery. I would throw away all my common sense, and travel the country, then the world non stop! I would pull an all nighter, embracing the chance to not have to sleep 10 hours straight in order to get out of bed in the morning. Bringing my family and what few friends I enjoy with me, I would experience physical pressure that is ensured in skydiving, surfing, scuba diving, a marathon! In reality those dreams crash, I don't want to dissapoint myself after all. Plus, there is no need to jump out of a perfectly good airplane, or climb a wave that a shark might be readily beneath. I still have fun in other ways meeting new people, waiting for health, learning new songs on guitar, feeling the sprained fingers after perfecting a more intense spin with a rifle, and watching the glow on the faces of people I can touch emotionally and support with my whole heart.
I am returning to church once again, and it finally feels right. My ideals have been so strewn after years of learning different concepts and researching the bible for myself. I spent countless hours crying for the Lord to just take me away and he never followed through. Now all I can think is how lucky I am for those unanswered prayers. This new church makes me feel alive, like I belong. They remember me and include me in the new youth group. The worship swells my heart and the teachings fill my brain. I get it, finally. The happiness, the surrender, the hope, the light. Like nobody ever would imagine, I find myself thankful for everyday small things again, the baby fish in my aquarium, the sunrise at 7 am, the beat of a flowing song, the smile of a stranger. I hope I can bring other people to this point, where joy is not just an adjective but a verb, flowing out of me in the smallest sometimes most invisible ways. I wish I could bottle up hope, even the tiniest bit of it that I have left, and share it with the world. Empowerment is a strong feeling, and I feel empowered to change the world even if I don't know how to go about that.
With so many down spirals I found it hard the past few months to keep up with my blog. I do want everyone to know what is happening though. I was horseback riding 45 minutes away, which was great until gas became such an issue and a few people at the property became bent nosed about one issue or another and I had to be the better person and leave. It's too bad that people have to be so juvenile and hold grudges. On top of that, It's unfair for someone like me who tries so hard to do 110% to be treated like all I'm doing is out to be in the way. I do hope in the near future I can take my experience and find a place where I am appreciated, and can ride to exercise a horse that is getting as little exercise as myself and just needs a companion. The experience of trying to run an entire estate sale, which was very successful until the last day, was too stressful on my body. I was not yet ready to be under that sort of stress. A week after the sale ended, a 5 week process, I developed a blood clot or deep vein thrombosis around my PICC line and had to have it pulled after 15 months. Nearly all my medicine stopped for 13 days until I returned to my LLMD, and the clot was watched very closely. I have recovered for the most part but am still struggling with worsened symptoms including return of brain fog, muscle twitching, fatigue, mood swings, pain, and nausea. Just the other day I started back at square one. I am now on oral Clindamycin, Rifampin, and Minocycline. I may have begun experiencing the migraines from the Minocin again today but I need to wait a few days to see for sure. The Clindamycin is substituting the PICC medication, and we are hoping for as good of a response. In two weeks, after taking these medicines, letting my body adjust, and detoxing, I will start Serrapeptase and Nattokinase to help break up bio films and make the antibiotics more effective, break up blood clots, and also break up cysts while reducing inflammation. I hope these medicines are as problem solving as they sound, and will have to wait to see for sure. Most people who are not sensitive to antibiotics or can't take high amounts due to stomach sensitivities would benefit from these two, as they are taken 30 minutes before antibiotics and are helpful in increasing the effectiveness of herbal or prescription treatments.
On the school front, I have set a challenging but realistic goal I believe to have my High School Diploma at the end of summer, do transfer credits and CLEP courses in the fall, and attend a local college in January of 2014. Determination is all that's getting me through right now. I am finishing a Physical Education class online right now, and taking a midterm for a Chemistry course that should get me through the test for the college credit. I will be taking a transferable English credit for one of my two required English credits left, and same with Health. I should start an SAT Prep course in December, and take my SAT's in May and maybe even in the fall again. Crossing my fingers for a clear enough brain to get me through another year of school online! The tutor is a huge help, without that help I would have dropped out of Chemistry online, and I am looking forward to more time with her until December or beyond.
I was directed to this web page by a friend whom I have discussed many detoxing ideas with in the past. Almost all of these I have tried, a lot of them I still do. Do what works for you, and remember that most people agree with the fact that detoxing is as important if not more important than the treatment of ANY medical setback!
Last week I finally saw a dermatologist who could help me. After 10 years or more suffering with pouring sweat from the back of my left hand, and googling the problem endlessly, I finally discovered the condition of excessive sweating was called Hyperhidrosis. When I was younger I saw a dermatologist that informed me he had never seen this, did not know what it was, thought I should tough it out, and sent me home with a prescription for Dry sol that burnt my hand and severely irritated my hand, not fixing the problem. Through my searches online I found two dermatologists, one through well renowned Dartmouth Hitchcock who has a branch in Manchester, NH, and one farther away who was willing to see me sooner. I scheduled both appointments and the first one was terrible. Dr. Campbell at Dover Skin Health did not spend more than five minutes with me, ignored my story, said less than ten words, and sent me home with a prescription for the same stuff that hadn't worked for me beforehand! It was a disaster, waste of a drive! After a three month wait I saw Dr. Willer through Dartmouth, and he was superb. He saw me 45 minutes late since my Lyme brain got me terribly lost, and spent at least another 45 minutes with me. He listened to my story, showed a diagram of the body's nerve pathways, described my condition and the concerns with certain treatments and their complications right now, and he even assured me we would figure it out once the Lyme clears up. There was nothing negative said about the diagnosis of Lyme Disease, and all was smooth. Dr. Willer had never seen a patient with this sever of a condition on the back of a hand, nor on the back of one hand. Usually patients suffer sweating on both sides of the body equally. So I guess I am one percent, and unable to receive surgery since the place of problem is nearly impossible to find. He suggested we get a neurological work up since usually problems on one side of the body are caused from a problem including a tumor in the brain or on the nerve somewhere. A tumor is unlikely after 10 years of dealing with this however, but still we should look into it. So when I see my new PCP for the first time I plan to discuss this with her.
The past month I have suffered sever nausea and spent some nights hanging over a bucket all night, as well as fatigue, migraines, dizziness, weakness, lack of appetite, weight gain, dehydration, bowel pain and discomfort, and we thought it was because of the switch of medicines. Now we find out from a call from the LLMD nurse that my liver levels are fairly elevated, more than three times the normal amount. I was taken immediately off of all my oral antibiotics and put on Milk Thistle for liver support. I'm still nauseas and ill after a week so tomorrow we will see what the liver test comes back like for the second time and depending on the results I may have to get a liver ultrasound to make sure nothing is severely messed up in there. Maybe after we figure this road block out we will be able to get me feeling near normal. It's amazing to think that even with liver inflammation I have been horseback riding again for the first time in two years, working for four days, attending an outdoor music festival, blasting through schoolwork, and possibly even receiving a promotion in Civil Air Patrol this upcoming Thursday night.
The week before I started schoolwork I worked a temporary position at Gunstock and got to attend the Soulfest for the four days I was there. Soulfest is a four day christian concert with over 100 artists and 5 separate stages. 10,000 people were there on the Saturday and that evening I got to see Casting Crowns. I saw Switchfoot, TobyMac, Casting Crowns, Lecrae, Fireflight, Family Force 5, Kutless, Rachel Taylor, Phil Joel and Peter Furler, Paul Colman, and so many more in the four evenings I was there. During the day I worked 8 hours with the adventure center doing zip line harnesses and directing people, answering questions, guiding the guests, etc. It was a worthwhile week. The third day I even got to go zip lining when it quieted down. That was the best experience I've had yet. It was amazing! Flying down through the trees at 59 mph and riding five different spans of line in the sun with an amazing view of Lake Winnepesaukee. I had a blast! I just wish it didn't take so much energy for me to participate in all the activity. I was pretty beat afterwards and spent all Sunday sick as a dog hanging over a bucket. Then Monday my tutoring was starting so I had to keep pushing through like I do best.