Port : New Treatment

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.

Hibernation Mode

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.

Update: Side effects of Levaquin

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.

Neverending Struggle

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!

New Beginnings

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.

Ups and Downs

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.

Detoxing

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!

http://www.naturalnews.com/036902_aerial_spraying_chemical_exposure_detox.html