Result of the Cardiologist Appointment

I had my Cardiologist appointment yesterday and I must say, I had the best appointment possible. The specialist was incredibly compassionate and understanding, hearing me out about the fact I suffer from Lyme Disease and have been on and off of treatment for 5 years and on IV antibiotics currently, even acknowledging the port and saying the two magical words: 'I understand'. He seemed to have a few different ideas of my prognosis, and wanted to run a few more tests to see what is going on. He believed me, listened, explained everything fully, and held eye contact. These are difficult traits to have with a consultation appointment nowadays with the medical field feeling entitled and sidetracked, calling every patient a drug seeker or hypochondriac. However Dr. Lootens of Concord Cardiology was not the cookie cutter physician. He was amazing, and I'm excited to work with him on figuring out my high heart rate and heart palpitations. Currently I had a 24 hour Holter monitor on to record my heart rhythm through everyday activities, which I return in a few hours and wait a week for the results. Next Wednesday morning I have a Echo Cardiogram where they will ultrasound the structure of my heart and cancel out the possibility of physical defects. These two tests should answer a lot of questions, and if needed we can try to push the insurance company to cover the new 2 week Zio monitor, a silicome patch on the chest that is waterproof and adhered on, measuring the heart and blood pressure for two weeks straight to give a better picture of the possible problems. The hope is to find something that does not require a long term treatment. There must be something going on, as I have suffered palpitations for almost 2 years and my heart rate can reach 200 bpm with a simple moderately inclined walk at the gym in a matter of 3 minutes. Hopefully this is just the result of genetics, high heart rate runs in the females for 3 generations. Possibly the cause of not being in shape. For now I wear the monitor and hope for answers, waiting for the return to the office on the 19th.

Planet Fitness, Starting Out!

After months of deliberation I decided that living in New Hampshire is not conducive to a work-out friendly outdoor environment. My friend Rose and I had wanted to start getting active again. I wanted to raise my serotonin and fight depression, anxiety, and fatigue while strengthening my legs for horseback riding and skiing. She wanted to lose weight and gain strength for military goals. We have both finally signed up for the planet fitness black card and decided to split the $20 per month price. It has been almost a month of exercising, and though I have had some problems between my heart rate and liver, and even some magnesium deficiency I can truly say I have made the right decision. I go late at night typically, and as much as possible. Every day is difficult since she has school and I have a chronic illness and also work and classes at night, but I manage to push through a lot of obstacles to get to the gym for an hour or two. Already after a few short weeks I have increased my weights with my lower body from 30 pounds to 90 pounds. I do 15 repetitions, 3 to 4 sets if I can and only after 15 minutes of stretching and 15 minutes of a walk/jog on an incline to warm my muscles up. It is not easy for me, as my body hurts and arthritis flares in the winter months, but improvement is really important. If I can improve every three weeks at this rate, I will notice a huge difference in 3 months time and be conquering my leg workouts with at least 150 pounds and a 10 minute jog. These are realistic goals, and important for my future coping strategies with my disease. Being able to bring my friend along with me and have us help each other out is that much better, because 75% of what's tough about going to the gym is GOING TO the gym. Once you get there you're golden!

My Body as Pandora's Box, New Cardio Symptoms

One thing I learned really quickly to appreciate about life is that it has never been something that has gotten boring for me. I have always been to a point where everything seems like a plateau that lasts only a short time, then a turn of events either ends me in a free fall toward earth or on a cloud somewhere embracing greatness. My most recent turn of events starting off the 2014 year were nothing fluffy and pretty and cloud like at all. It all started with my new gym routine. I noticed my first day of working out that my heart rate jumped up to 205 and all I was doing was a gentle incline at a walk on the treadmill. That level of bpm is not healthy, but I didn't know any different at first. I continued to return each day with my friend Rose, simply doing some stretches then a walk for about 15 minutes, and occasionally picking up an additional 15 minutes on the stationary bikes. Still my heart rate according the the hand sensors on the equipment was around 200 or more each workout. After a few days of this I began bringing it up in conversation with people I had known for years, the type of people that might as well own the gym because they are there so often and have worked out enough. They kept commenting on how their heart rate at  a full run never exceeds 180 and I should be cautious. I researched the typical target heart rate for someone engaging in cardio strengthening exercise at my age and weight, and all the figures said I should aim for around 170 bpm. How could I control that, if my heart rate skyrocketed at just a walk? After about a week and connecting the dots I called up my Primary Care Physician who scheduled me for an appointment that week, with concern for worse problems. After checking me out in the office and hearing a normal heart at a calm pace of 80 beats per minute, she performed an ekg and decided to refer me to a Cardiologist to double check what could be happening, and ordered a 24 hour halter monitor. Within five days I was receiving a call from my Lyme Specialist's office. The blood work I had drawn every Monday while on IV medications came back abnormal, with liver function levels double the suggested range. Immediately the LLMD stopped all antibiotic treatment for a week, prescribing Milk Thistle for liver cleansing and telling me to keep hydrated. After a week I returned to the lab yesterday to recheck the levels. I'm still waiting for the results to come back about that test while I reschedule work tomorrow so I can make it to my Cardiologist appointment. All of these things add up to a hurting, nauseas, declining, forgetful young girl who still is pushing through for friends, the gym, school, work, volunteer activities, and last but certainly not least, horses. By the end of the week I will have a better idea of what the plan is for my treatment and coping strategies, and hopefully my LLMD will set my mind at ease next Wednesday when I see him.

Two Steps Forward, Three Steps Back

After four weeks of being on IV Doxycycline, the last medication left I had to try for IV, I still felt no better. My memory betrays me just as it does those around me, and I forget the exact reason why I stopped IV Doxy. I remember a phone call with the nurse at the doctor's office saying it would be best to stop the medicine, maybe from me still not improving? They wanted me to start back on Mepron for the month, and I only remembered to take the yellow paint-like liquid once. In fact for almost an entire month I completely forgot probiotics, Nystatin, B12, and Magnesium which are all important supplements I take to help me get through from day to day. I was told to wait another month and see if just the Clindamycin would do anything, however I knew in my heart that it wouldn't. Why sound so pessimistic? Well, I know I've been on the medication in the past, two separate times. I know that once you do a medication seriously and then stop, the bacteria tends to seem more immune to the substance in the future. Some argue that fact with the idea of pulse therapy where you start the medication for a short bit of time, then stop it long enough for the bacteria to be caught off guard when you restart two weeks later. Pulse therapy is a very common treatment plan used by New York specialist Dr. Horrowitz, I believe, not something that ever worked in my situation. For some people, those more sensitive to medication changes that feel Herx type reactions with treatment, Pulse therapy can be the difference in successful treatment. I have always been difficult to treat, with a poorly absorbing stomach and impossible Lyme symptoms. Very few medications made me feel a possible Herx, and very very few made me feel better. There was a total of two summers I did very well with no rhyme or reason, and I am beginning to think it was more heat and mild weather related than it was medications. Beside all of that, I also know that the second time I tried Clindamycin back in the spring, I felt no effect from it. My main hope in my treatment after leaving my LLMD's office was for the Iv Doxycycline, keeping at the forefront of my mind its effectiveness in treating Lyme and Coinfections like Bartonella and Babesia, both I'm suspected to have. For now I slowly decline until I see my Doctor again, dealing with other issues in my personal life, and trying to survive a more normal life as a student and part time employee.

The 'Fall' Fall

Every Fall it occurs. I should have known it was coming. The summer died in a slow wave of cool, with clouds moving in and weather changing hastily. Still I was signing myself up for activities and volunteer events. I had a great summer, full of energy and prosperity. I was working all summer, anywhere from 20-40 hours a week, and spending the rest of time dating, hanging with friends, playing guitar, riding horses, showing mini horses, and living. Then Fall hit. My life crumbled from beneath me just as the leaves did beneath my feet. The summer job ended abruptly, and my energy levels dropped. The Vitamin D I thought was working so well seems to be ineffective now. As the weeks went on, closer to snowfall, my symptoms returned one by one. I felt the fatigue, the sleep disturbances, ear ringing and pain, stomach pain/nausea, joint pain and muscle soreness/spasms. Still my condition has worsened, tendonitis, severe memory loss, brain fog, headaches, dizziness and lack of appetite. All the symptoms make it difficult to attend classes and think about my upcoming Winter season job. Today my doctor's appointment with my Lyme Specialist had me worried, as I did not know what else we did not try for medications and what could possibly be next. After a debate, he asked "What are we going to do with you?"

We decided to try a whole new treatment than the oral medicine I've been on the past two months. Instead of oral Doxy we will be doing IV Doxy, instead of Mepron we will be doing IV Clindamycin, stopping my Tindamax while my body adjusts to this major load on my system. These IV medicines will most likely beat the crap out of me, but the hope is to kill this bug once and for all so that I can move on to the next stage of my life after my last semester of High School this upcoming Spring.

So onward we venture into the cold months of a New England Winter with IV pole in tow. Hopefully my health will improve by the day and come next summer I will be able to head off into my next direction as my insurance ends.

Vitamin D Levels

About a month ago my Vitamin D test came back as a 30 in a range of 30-60. It was fairly low, and needed some help. After I started a supplement of 5,000 units a day, I started having more energy, and feeling better. I have noticed a significant impact of the Vitamin D on my energy and symptoms of the Lyme since I paused the IV therapy. I recommend everyone to check their levels and start a high dose D Vitamin to at least see how they feel after a week. I noticed a significant change in the first  3 days, more energy, higher spirits, more motivation. I sleep well at night, but not as long, and I get stuff done in the daytime. It's worth a try, I have been working and exercising and keeping out straight busy, yet I am not going downhill, in a wheelchair, having spasms, etc. That is a really good sign after the past 2 years I have had. I am embracing it and living life to the fullest, and making sure to take all my medicines on time! A pill a day keeps the fatigue away.... maybe? I'd be interested in hearing everyones feedback on how this works, please comment here if you do try it!

Social Security with Lyme Disease/Related Disability

One of the biggest questions many Lyme sufferers or people with coinfections have is what to do now that they can't work, or haven't been working. I have not been able to answer much of these questions, or give further information. Recently someone emailed be an article to help give insight on what help is out there, and how to go about receiving that help, as posted below:

"Applying for Disability Benefits with Lyme Disease

Although Lyme disease can be quite debilitating, its affects on each patient are different. Additionally, because the symptoms of the condition can be quite pronounced at times, and go into relatively long periods of remission, it can be challenging to receive qualify for disability benefits through the Social Security Administration (SSA) for this condition.

Though difficult, it is possible to prove disability and get the benefits you need, if your Lyme disease is so severe that it prevents gainful employment for a period of 12 months or more or is expected to do so, given the extent and type of symptoms you experience.

SSA Disability Programs

The SSA has two disability programs for which you can potentially qualify with Lyme disease. The first, SSDI, or Social Security Disability Insurance, is a program designed for disabled workers. SSI, or Supplemental Security Income, is the second program, and it is a need-based benefits program designed to provide benefits to disabled workers and/or their dependents.

Basic Eligibility

To be eligible for SSDI and/or SSI, you must meet the basic medical requirements for proving disability. These include:

• Having a medical condition that can be substantiated through standard medical means, meaning it must be proven with significant medical documentation and that documentation must satisfy the SSA’s evidence requirements.

• Suffering from a disability that has been, or is reasonably expected to be, present for at least 12 months or which is terminal.

• Your condition must prevent you from maintaining gainful employment in any job for which you would otherwise be qualified.

The previously listed basic eligibility requirements satisfy the medical portion of eligibility for SSDI and SSI; however, each program also has technical eligibility requirements.

• For SSDI, you must have work credits from your previous employment, and must also not earn more than the SGA, or substantial gainful activity, threshold in monthly earnings from employment. You can learn more about SSDI here: http://www.disability-benefits-help.org/ssdi/qualify-for-ssdi

• For SSI, you must have very limited income and other financial resources with which to support yourself, as this is a need-based program. You can learn more about SSI here: http://www.disability-benefits-help.org/content/about-ssi

Qualifying with Lyme Disease

To meet the SSA’s medical eligibility requirements, you must fully document the affects of your Lyme disease on your ability to work and your everyday abilities to complete tasks in your personal life as well. While the SSA has no dedicated listing for the condition under which you can qualify, there are multiple listings in the SSA’s Blue Book (http://www.ssa.gov/disability/professionals/bluebook/) that may be applicable to your claim. This is because Lyme disease can have severe affects on multiple body systems.

To qualify with this condition, you must:

·         match a listed condition in terms of severity level

OR

·         document that your residual functional capacity (RFC) is so limited that you qualify under a medical vocational allowance (MVA)

The following conditions may be ones that your Lyme disease application can match, provided you have the appropriate medical documentation to satisfy the SSA’s evidence requirements:

·         Musculoskeletal System – Section 1.00

·         Cardiovascular System – Section 4.00

·         Mental Disorders – Section 12.00

·         Inflammatory Arthritis – Section 14.09

It is also important to note that the SSA will take all of your symptoms under consideration when determining if you meet the eligibility requirements for receiving Social Security Disability (SSD). In other words, if your symptoms fall under more than one of these listings, the SSA will consider the medical evidence you provide in comparison to multiple listings.

Starting Your Application and Getting Help with Your Claim

If you are ready to begin your application, you have two options for getting started:

• visit the SSA’s website, to start your application immediately,

OR

• contact your local SSA office, to schedule an in person interview during which your application will be completed.

While it is possible to receive disability benefits for Lyme disease, it can take a long time for your application to be approved. You may have to go through more than just one round of reviews before the SSA finds you eligible, and you may also have to appear at an appeal hearing, if your claim is denied more than once.

Seeking the help of a Social Security Disability advocate or attorney before filing your claim is advisable with Lyme disease. However, an advocate or lawyer can assist you at any stage in the application and review processes as well, and can potentially increase your chances of being approved for benefits."

Article by Ram Meyyappan
Social Security Disability Help
www.disability-benefits-help.org/blog

Hopefully that helped somewhat, though it is a mindful to read. I put this out there as a reference for many people starting to navigate the hoops of this illness and survive even when the going has gotten rough. 

Hearing Symptoms

I've had Lyme for 5.5 years now, and the majority of the time fought the same symptoms. The first few years was one cluster of symptoms, from joint aches and pains to stomach problems to dizziness, while the past few years have been another set of symptoms on top of those more commonly known. I've had coughing, muscle spasms, weakness, swelling/low circulation, heart palpitations, pain, double vision, even the more severe neurological symptoms of speech problems and walking difficulties. Never has it affected my ears until recently. I was on a treatment that included IV Vancomycin, known for its possible serious side effect of hearing loss, for a short amount of time. After the two months or so I went back to the Lyme Specialist complaining of ringing in my ears and short term hearing loss from one ear randomly. He stopped the Vanco immediately, worried about the long term implications. Since then, the past two months, I still have had hearing problems much the same but more frequently. Most of my symptoms have been blamed on Bartonella, and I'm not sure anymore if this is another Lyme/Bartonella Symptom or if there is some permanent damage from the treatment. Medications affet every person differently. What could be a side effect for one person could simply not occur in another person. Just the same, what could help one person could harm someone else, because the body is different. Where Vanco is one of the more strong medications on the market through IV for a treatment option, and was covered by insurance, it was a good thing to test out. My ear problems could very well be coincidentally new symptoms as my condition worsened over the past few months. In time I'll know for sure, if the diseases go into remission and the symptoms diminish.

Birthday Countdown

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.

The Big Picture

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.

Working towards Graduating

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.

April 10, Update

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.

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.

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.

Powerhouse!

Just wanted to share a post on how an unhealthy person can be a powerhouse when allowed even an inch of freedom from an illness. I completed nearly 6 weeks of schoolwork with an A at the end of the day in just 2 days! How AMAZING is that? Biology has been a course hanging over my head for an entire year of foggy brain days. I finally am beating it! I am winning this one, and I start a Physical Education course on Friday which should get me through another mandatory credit! My tutor is finally coming to keep me on track and we did a lab today and extracted DNA from peas and spinach. Such fun! Then I got to make a brochure on Babesia as a parasite which made me happy. I may have discovered the cause of my increasingly worsening symptoms over the past few weeks. My doctor's nurse called today (the LLMD) and took me off of all my antibiotics that I take orally because my liver test I do weekly to keep him up to date on it's function was extremely abnormal and concerning. We are going to retest in a week and possibly do another ultrasound on the liver if this medicine break doesn't fix the problem. It is a little concerning that I am having liver problems yet proceeding with life full force. My last horse show of this season is in two days, so I have to push through at least for that. Tomorrow I see another dermatologist to discuss the Hyperhidrosis on the back of my left hand and see what he might could do about it. Then I have a long day clipping my horse (shaving and cleaning) for the upcoming show and there will be no time to rest until the evening.

Minocycline, Plaquenil, Worse Symptoms

A few weeks ago my doctor's appointment was enlightening. We were happy with my progress, discussing removing the PICC line soon, and working on getting me back into school. We switched the  Zithromax to Minocin and Plaquenil to better combat my neurological symptoms, and I regret it. I now have suffered such bad symptoms, that I couldn't tell what was causing the problems. I had my first cycle since being off hormone medications, which sparks the Lyme up and messes up my body; the medicine change would could be either side effects, herx reaction, or just me backsliding; an increased stress level on the home front and personal side of things; and then the added challenge of trying to get me back into school work and bible studies all over again. Now, I spend all day every day feeling like the room is collapsing in on me with this weird dizzy vertigo type feeling. My eyes are acting up and so light sensitive again it is actually quite sad. My sound sensitivity has gone back up to the point where phone conversations are a challenge. Within the past week I had a migraine almost every day, managed with lots of mid day naps, a dark room, Tylenol, caffeine, loads of water, and ear plugs. After a nap and some medications it would usually reduce to a manageable point where I could sit up, talk, or eat lightly, but was still nauseas, taking a combination of nausea medicines, and still too dizzy to make it farther than the bathroom. Yesterday I did not have a migraine, I had other problems and stresses to manage. I have not had one yet but I'm trying to update all my fellow Lyme sufferers before it hits and I'm out cold for the rest of the day and night. I stopped the Minocycline, which was the second one I had started right before the migraines hit, and I'm waiting to see if my brain clears up a bit in the next few days. I have stayed on the Plaquenil the entire time so I can better see what is causing my symptoms to be worse. Small steps of change. I plan to be back on my gluten free casein free caffeine free diet as soon as this calms down and my progress changes direction again.

Minocin, Omnicef, Plaquenil, and Clindamycin

My lyme doctor has yet again switched up my protocol a bit. This time it's purpose is to get me back on some medicine that will combat the Bartonella in all it's forms. Minocin is a doxycycline type medicine that is used to treat lyme and is one of the first medications used in most peoples treatment. I have never been on doxy, but this is my 3rd time on Minocycline known as minocin. We just started the Minocin and Plaquenil two days ago and I have been on the Omnicef and IV Clindamycin for atleast  a few months. This is my thirteenth month on IV Medication, technically twelfth month since I took April off. Only two have been on Clindamycin and they have been the best two months yet. I am on my third month now and feeling pretty good. Coming off of the Yaz/Gianvi has straightened out a lot of depression symptoms, and coming off of Elavil/Amitriptyline helped my heart rate and dizzy spells. I am on an adrenal support supplement, powder magnesium, Co-Q 10 and sub-lingual b-12 to help with energy and detoxing. The grand scheme of things is hard on my stomach, but you can get a lot of this stuff that is drinkable and dissolves in your mouth to lighten the load on the gut, and increase the efficiency of the supplements. I am more energetic, cleaning around the house and getting out more. If my memory was not still blocked I would even be clear enough to start catching up on schoolwork and finishing my Biology and Spanish from Sophomore year. I am going to start a Physical Education class online to start doing something to get me back on track, and now that my visiting family has left and things have calmed down (see 'Half Brother for Christmas'), I can concentrate more on getting myself back into life. I still need to rest and take it easy, but I have even gone as far as starting to run every other day!