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!

My New Experiences with the Miss NH Scholarship Program

Three weeks ago while at work, there was a beauty pageant hosted on a local level, with 8 female contestants all looking gorgeous and around my age bracket. I got curious and asked questions about whether there was an entry fee. Before long I was signed up for a pageant. Fresh out of a committed relationship, I needed something to distract me and boost my self esteem while I overcame the heartbreak and the beauty pageant world fell into my path. Some of the pageants award scholarship money just for participating, but all are free and worth the try. I have met some amazing girls in my first two pageants, along with winning $500 in scholarship money and gaining experiences and confidence of a lifetime, all in just 3 weeks! I have been doing well, my talent being rifle spinning, my platform of lyme disease awareness and interview skills at the forefront of my success. One day I hope to win a local title, where I will progress to the Miss NH stage, and maybe sometime between now and me turning 24 years old I will even get the honor of representing the state of New Hampshire and getting some things changed for Lyme Disease Awareness as Miss New Hampshire. The chance to gain the scholarship money inspires me to look into a long time passion of being a vet. Without going to 8 years of school, I can get my associates in Vet Technology and one day specialize in horses or zoology or exotic animals, all things I'm so passionate about. I believe this is what I want to do for my steady career, along with pursuing the Damsel In Defense business on the side and training horses. Even when I feel like my life is shooting into 15 different directions I try to recenter myself and realize that I am doing really well and overcoming Lyme Disease for a purpose, and one of these many directions I'm going will be the greatest thing to happen in my life, and affect the lives of those around me in a positive way. So I persevere and give each direction my all, waiting for the 'pay day' of sorts where I can see it fall into place and know the purpose of all things I have suffered and struggled with, yet grown from.

Damsel In Defense

A few months ago I was at a wedding where I met a very unique women. Her job was selling non lethal women's self defense weapons. In a very new business, created just 2 years ago, called Damsel in Defense, she puts on home parties, run similar to avon or pampered chef, where she displays the products and sells these important novelty items to women and even men of all ages for gifts, personal use, raffles, stocking stuffers, and more. Between the alarms, mace, stun guns, and recently the new kits the company has come out with, it is a very broad range of tangible items that every woman, family, apartment, and businesswoman needs. From the partying young adult, to the child with that long walk to the bus stop, to the older woman walking to her car after work in the dark far parking lot, everyone needs to be prepared for the worst. I was so inspired by the fresh concept that I decided I could do it very well. It is something I am passionate about. Finally after months of research and looking into it, I have my launch party on the 16th of this month to begin the business that I know will change lives down the road. 1 in 5 women have experienced or continue to experience the horror of sexual assault, and it is time they are armed and provided an escape from that terrible hell! With any questions on the products or how to host a party in your own home e-mail me at elainampowell@gmail.com. I would be willing to work with people from out of state even, to do online parties or just sell the product and ship it directly to you. Here's to a new passion, one I can carry with me in my purse and prevent a future tragedy!

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.

IV Treatment Paused

I have become increasingly worse the entire time I have been on IV Clindamycin through my port. The side effects of acne, stomach problems, and increased yeast were too much to be worth the worsening symptoms over the month of May. When I saw my Lyme Doctor recently he suggested we take a break from IV, leave the port in and de access it, and wait the summer trying oral medications to see what happens. So I can now swim, shower, go to my Civil Air Patrol encampment, all without the complications of the IV treatment. Hopefully I only get better, after starting the oral Tindamax, Zithromax, Minocin, and A Bart I have already been herxing for the first 3 days and trying to just push through. I start a 4 day work week next week, head to prom with a friend, as the temperature climbs and I'm trying to keep myself upright. On the plus side, I have an amazing connection with a horse I'm working with, a few solid friends, short shifts throughout the week, and many big dreams and goals for the summer. I am considering starting my own business in women's self defense weapons, continuing my horse related career, starting night courses in the fall to get my diploma in January, and meting people everyday through Civil Air Patrol (which I am now a Tech Sgt in), and working sales at Gunstock. Now just to wait and see where life leads me.

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.

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.