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.

Horse Show

On day 10 after Gall Bladder surgery I was up early and gathering my gear for my first horse show of the season. It wasn't a horse show like many, because this was a MINIATURE horse show and you don't ride minis! All the animals were beautified for the weeks ahead of the show and the day before and day of they were perfected for the ring and judges eyes! Showing is something I'm allowed to do with the miniature barn I'm allowed to visit frequently and help out at. Me and the owner, Wanda, have a great connection and we are like family! 'My horse', Miracle, is a mini that she keeps at her barn and lets me see as often as I need or want to. If I'm feeling well I'll try to be there twice a week or more, cleaning out the barn, refilling water buckets, taking the babies for walks to get them used to halters and brushing down any in my path. There's quite a few of them, at one point close to 40 of them!

The show went well, I stayed in the shade, tried to remember to relax, and went in three classes. A show is split up into multiple classes where the judge looks for different things in each class and judges accordingly. You can enter more than one in a day, and enter different classes with different horses. In the last classes of the day, called Liberty, you have 1:30 to dance with the horse to music of your choice without touching them with the whip, while the judge looks for teamwork, enthusiasm, changes in gaits (speeds) and directions, and the animals cooperation. You then have 3 minutes to get the halter on the horse and lead them out. Miracle ran for the majority of the class, more than she usually does or ever has before, switching directions even though not as frequently as I wished. At the end she ran right to me playfully taking another lap and putting her head into the halter for me. Talk about teamwork. The video will be on my mother's youtube channel (alagash98) and probably on my facebook accounts as well.

Heres a picture of me and my best bud waiting for class #2, and some of us just chilling!

Thursday May 17th: Victoria Arlen, Going for Gold! | WMUR Home - WMUR Home

Thursday May 17th: Victoria Arlen, Going for Gold! | WMUR Home - WMUR Home


This is a young lady I met when I was participating in a lot of the Lyme Legislation here in NH. She is remarkable, such an inspiration! We are kindred spirits I'm told. Watch it on Chronicle or online tonight!

Drug Holiday

I went to my Lyme Specialist a week ago, which was thankfully only a thirty minute drive I had to embrace by myself. We spoke of the idea of a drug holiday since I'm feeling so terrible. When a Lyme sufferer makes such a drastic change to his/her medicines, there is a lot of danger involved with the reaction the body can have from the release of the bacteria and harmed immune system. When there is no medicine in the bloodstream the bacteria of Lyme of the coinfections that come with it can come out of hiding and run free in the body. In a months time this theoretically will let the Lyme come out, filter out side effects from prescriptions and herbals, and of course some further concussion symptoms so that we can reassess where my body is unmasked. This way we can see what is plaguing me the most right now, and what symptoms we need to concentrate on. Also the break from the medicine can give my stomach some time to heal. I take antacids, Carafate for ulcers, magnesium for detoxing, and Liver life to clean my liver and keep it working smoothly while I'm on this holiday. My main concentrations while off the antibiotics is to watch my blood counts, flush my IV regularly with saline to keep it working, detox the medicine out of my system as much as possible, keep my face clean of acne, journal how I'm feeling on here, and straighten out my stomach. We are going to limit my activity to just one event, like working towards the mini horse show on May 12th. Rest is a huge lesson I need to concentrate on right now. If I don't rest I'll stress and get worse than I already feel.

Recovery from Concussion

It has been over two months since my unfortunate concussion occurred while trying to enjoy some fresh powder on the ski slopes. Sitting here today, I don't even know what to type to explain to my followers and even strangers how the recovery process has been going. In simple terms my brain is gone. We thought it would take two or three months for me to be 100% but with average Lyme Disease neurological symptoms irritated, it's going to take a lot longer. I attended five weeks of a concussion rehabilitation center to strengthen my balance, eye sight, and reaction time again. Needless to say the concussion cleared up quite a bit with that and the help of solid rest, but the Lyme didn't. My symptoms of fatigue, joint pain, swelling, muscle twitching, light sensitivity, sound sensitivity, depression, anxiety, huge mood swings, brain fog, memory loss, and lack of concentration and motivation have increased significantly. I took what is called an Impact test for athletes that gauges reaction time and processing speed and failed miserably. Some mornings I awake in such a state of pain I can't move from mid-torso down. It takes me multiple hours to wake up in the morning and be able to put on a smile or get dressed. Showering has become a worsened chore as I'm still dizzy and just so weak and miserable. Can you imagine not even being able to get yourself clean because you would have to choose between clean clothes or a clean body, showering or getting dressed, getting dressed or leaving the house for a doctor's appointment in your pj's? Most people inflicted with Chronic Lyme can relate, but others have no idea of that thought process and how discouraging it is. I can't do any schoolwork because my brain is not clear enough and that makes it impossible to graduate on time, so a high honor student now has to take an extra year to complete high school's basic courses. This whole disease is such a burden, such a humbling experience.

Concussion with Lyme Disease

On March 1, 2012 I decided to go skiing in a snow storm with my brother and boyfriend. The trails were not groomed and filled with moguls, bumps, patches of ice, and slow traveling people and my weak knees couldn't hold me up. I fell on my first and second run down the mountain, and the second fall did me in as I landed right on the back of my neck. I made it for one more run because I felt that I had to keep up with my brother and I don't even remember it but I did the pizza all the way down the mountain and collapsed in front of ski check where they carried me to first aid. I don't remember the time where they strapped me to the backboard and loaded me in the ambulance but I remember bits and pieces from the ride. It was a traumatic experience as the neurological blow brought back my symptoms from last summer. I started with whole body convulsions that appeared to be seizure activity and heart palpitations. My scar tissue from the tailbone surgery ached and my throat tightened and slurred into an abnormal sounding voice. The last thing I remembered before losing memory and being brought into the hospital was the AED machine reading 'Extreme Tachycardia, prepare for arrest' and the thought crossed my mind that I was probably about to die from skiing, just like my mom always warned. No matter how ironic, I'm doing okay now. I am attending concussion rehabilitation with Concord Physical Therapy and they are working on post concussion symptoms like reaction time, memory, balance, and neck pain. Over the course of the almost two weeks since the accident, I am doing much better. I get dizzy when focusing on an object to the side of my field of vision or turning my head too fast, and I don't have the concentration or clearness to drive yet. I can't stand for more then five or ten minutes because I get nauseas and light headed. Through all the symptoms I still managed to participate in volunteering at the Lakes Region Home Show in Lakeport, NH last weekend where we spent time talking to people and handing out information about Lyme and the upcoming tick season. It's always a great experience to see people walking away with a new understanding of their body and the environment they live and work in daily. I'm honored to be of help to others with awareness.

5 Little Monkeys Sleeping on the Bed

It's time to get a bigger bed. I have had an adjustable bed for about three years and it has been wonderful as I've spent many nights sick to my stomach or having to sit up after taking medicine so not to erode my esophagus. However, I am a teenager in a twin sized bed with three cuddly cats and of course my mama. We certainly can't all fit at once, I barely fit as is with my five pound kitten. So I decided it was time to upgrade to a full sized bed. This way on days that I'm sick or suffering depression I will have enough space for a companion, be it animal or human, to fit next to me and pet my head. Sometimes you just need your mama to lay down with you and listen to you cry. I realize I can't have that with a twin sized bed and an adjustable full sized bed is too much money for us right now. My goal is to get a regular full sized bed in fair condition as an even trade for the $300 adjustable twin bed I currently have in very nice condition. The mattress is well known as the comfiest bed in the house and among my friends, so i'm sure somebody out there will adore it. After I got home from work today I used my energy to turn on all my many lights (I'm a fan of light with white furniture, 3 windows, a 5-headed lamp, a ceiling fan, a lava lamp, a touch reading lamp, and 3 light enhancing window shades), and take some pictures of the naked bed for craigslist, face book, free cycle, etc. Now it's just the wait to find someone who so happens to be seeking to buy or trade with us for this beautiful bed that's treated me so well over the years.

Day 7

It's the final day of the seven day challenge. Today has shown me that seven days just isn't enough to get inside anyone's head. I have found that blogging everyday is challenging yet rewarding. Its therapeutic almost like journalism. I need to be using this website to not only keep my family and friends up to date on my recovery, but to show other people with chronic illnesses or handicaps that I will get better and it's okay to have bad days. We all learn lessons from mistakes and problems we encounter in our lives. If I can share my lessons with others, maybe they won't take the three strike rule to realize they need to listen. One lesson I realized today was I have no ability to pace myself. I push way too hard, and I don't know how to say no. When I think I feel better, I say yes to everything, fill up my schedule, and forget that I should take at least six months of symptom free days before I take on more than two activities. Then, just like before, I am declining health wise and stuck in a snowball effect of promises and responsibilities that I can't maintain. It's more efficient time wise to make a limit. Two activities is a safe bet, because you can pick a mandatory one that will effect your future, and a fun one that will give you purpose and enjoyment in life. For example, school work and a sport, or work and volunteering. Life is all about balance, and Lyme patients have to have even more balance than they believe they need. Balancing diet, physical activity, stressors, responsibility, and relaxation is mandatory. I am in the process of redesigning my life so I can take a step back and balance everything again. Today I couldn't even attend Civil Air Patrol because I woke up this morning on my one day of the week off from work and couldn't move from bed. My mom brought my a small lunch and my IV Nurse changed my dressing in bed. When I moved at 3:30 pm I was so dizzy and nauseas from napping that I cancelled the nights plans, and went right back to bed. Sometimes I just wish I had someone to sit with me and pet my head, or listen to me complain when I'm miserable. Not give me advice or motherly comfort, but that's okay sometimes too. The point is that there is a time for both, just like there is a time to be proactive and there is a time to be reactive. I have made choices that I now have to be reactive to, but next time I will be proactive and control my choices. If I could give major advice to any sufferer of any road block anywhere, it wouldn't be to keep your chin up, because sometimes the sun will get in your eyes, it would be to be proactive, and put on those sunglasses before you put your chin up so the sun will not affect you as much.

Day 6

I've persevered for my few followers on to day 6 of my 7 day blog challenge. Today has been a weird day. I haven't been in bad spirits, but I have been distant with thoughts and pressures of what is going to occur in my future. I had a visit from my home visiting nurse this morning. She comes once a week, takes my vitals, checks my IV for problems or infections, changes the dressing around the PICC line, draws my blood, and notes any changes in medicine or how I'm feeling. She can't come any less than once a week so I will see her again tomorrow since we are switching my day to Thursdays, my day off. She had a student with her today so she was running a bit late, which meant we had 10 minutes to zoom through a dressing change so I could rush off to a mediocre day at work. I worked from 10-5, pushed through two rushes and smiled at everybody as nonchalantly as I could. At the end of the day I was ready to go home, because there was family drama I wanted to be home for. I made it in before 5:30 pm, which felt great! That gave me enough time to suffer an hour of showering duties, and think about how I didn't have the energy to do the laundry or dishes that needed to be done, and how I didn't have much of a gluten free selection for dinner. My mom took off to go grocery shopping with my dad so I caught up on two episodes of the TV show 'Castle' about a detective and a writer in NYC. Its a good show, takes me to the fantasy of a world where the main characters are completely healthy, carrying out high energy jobs without a problem and thinking through major screenplays that my brain can barely comprehend as the viewer, forget the writer! It's been a long day with fairly warm weather and a lot of thought. I'm sure my brain will be relieved to turn off for a few hours as I sleep. Finally got Melatonin so I should sleep well tonight for the first time in a week! Off I go!

Day 2

Today was a busy out straight day. Like most of my days, I didn't have time to take my medicine, pack a gluten free lunch and dinner, get sleep and still eat a healthy breakfast, or even take a couple minutes to close my eyes and think. I drove my parents around Laconia, running a few errands and attending half of the Lyme 411 Support Group meeting. At the meeting I met a fellow young girl with Lyme and smell sensibilities. I did not realize how sensitive people can be to scents like perfumes and cleaning solutions. It's another invisible symptom of Lyme Disease that many don't care to recognize. I rushed my parents back home and sped to work, not even enough time to fill my water bottle so I'd stay hydrated. I arrived late, and still all the handicap parking was full so I had to forget the placard that I still have until the end of this month and park a mile out, practically running to clock in. Then I made my way to the basket room where I work half the time and told myself I wasn't hungry. After all I was late, there was a line, and I didn't have time to eat even if I went to get the food. So I jumped right in, answering phone calls, collecting bags, logging lost items, and completely spacing the fact that I forgot my sneakers in the car. After two hours I was hungry and thirsty, beginning the stages of being dizzy and lightheaded. Four hours in my entire back and down my legs hurt from the decorative boots I was wearing and my head screamed at me to just sit down. Five hours in I splurged on a cheeseburger and some chocolate pudding, shutting my head up and killing my stomach at the same time. I left work after six hours of strategically catching as much sitting time as I could and ignoring the elbow and knee pain. A member of security drove me to the back parking lot to retrieve my car and I made my way home. I just finished off that pudding and it was very good, though I know tomorrow I will wake up with the same familiar headache and lots of abdominal pain. I'll probably toss and turn tonight and need to drink a glass of magnesium tomorrow just to make it through the next 24 hours, but I'll survive. I just can't wait to put on some comfy clothes, and set my alarm for 8 am. I can't believe I still have to brave the shower either tonight or tomorrow. Its a regular activity for many but its an hour and a half of wrapping my arm in plastic wrap and medical tape and getting help to scrub my hair since I can't bend my elbows or get my Picc line(IV) wet. I end up getting out of the steamy heat and feeling like collapsing because of the nausea and fatigue it creates. Lyme doesn't like heat, and it makes you feel like a vegetable when you spend too much time in it. Thankfully my mother is there to help me and I'll get out alive no matter how questionable I feel half way through the process. The hardest part now is to figure out whether to take it after such a long day when all I want to do is sleep or beginning tomorrow which might drain my day's energy. I've gotten up to take showers in the middle of the night because of this reason, then I get a little rest and I still get more before the next day. For tonight I'm just going to get ready for bed and embrace the opportunity for that free clean feeling tomorrow. Goodnight world.

Day 1

Today is the first day of my seven day challenge to post daily on my blog about the events of my life.

The past few days I have been suffering a bad head cold on top of the Lyme symptoms. It kept me in bed for two days, making me miss Civil Air Patrol last night, and I woke up this morning still fighting the stuffy nose, sore throat, headache, slight fever, and fatigue. My eyes burn and are watery sometimes, and my nose actually hurts bad enough to question if its broken sometimes. I know that may sound dramatic, but the combination of the burning, stinging, and sinus pressure is brutal. I woke early and rushed myself to work for 8:30 AM. That means I had to wake my insomniac self at 7:15 this morning, with only 8 hours of sleep where my body usually needs 10-11 hours to have a healthy rest. I worked alone for two hours while Gunstock bustled with middle school students on a field trip and early vacationers from Massachusetts, and then my help finally came in. At that point I was beyond caring if the cold was contagious, because I was tired, sweating, in pain, and dehydrated. I splurged at lunch with a brownie and knowing that was going to hurt my stomach ignored the gluten and dairy. Leaving work early at 2, I jumped in the car, rolled the window down in the almost spring weather, and navigated my way to UNH where I am blogging right now while waiting for my brother and boyfriend to return from a meeting. If I felt well enough I'd use this time to take a run, but I don't know my way around this campus and frankly I'd rather soak up any time sleeping I can. My whole body hurts, and feels bruised. I know my head is mad at me for not staying hydrated enough and pushing myself physically and mentally. I'm so used to the pain that I just keep pushing through it. Most people with Lyme or other chronic conditions do the same thing, smiling and keeping busy to sidetrack themselves from the crushing hurt all over. When one body part hurts long enough they all start hurting and become hypersensitive. That's why even a poke or pat on the back can seem like a brutal attack.

Overall my optimism is high today. I have my ups and downs, days where I would rather disappear and days where I know I have to keep going for the family and friends who love me. Today I feel loved. There's people I don't even know praying for me, and though it's hard to imagine I recognize that today. I want to be an example to other teen girl's who are on the brink of hopelessness. Being depressed, being sad, being frustrated and disappointed, that's okay. We all have those days no matter who we are. It doesn't mean you are weak. Take your day or your week to be upset. Cry, yell, lock yourself away from the world, eat that chocolate and listen to those sappy songs. Sleep in the middle of the day and stay up sobbing your heart story into your journal at night. That's just how your body is handling it's stress, and we all need to relieve that stress in our own way. Have you had your moment? Okay, now pick up the pieces, apologize to your friends and family, put away the junk food, change the playlist on your ipod, and get your life back together. You have to be strong because we have no choice, and other people like myself need an example, we need a strong role model. We'll all get through this. Together.

Update: February 16

My world has been spinning around me. I think sometimes people tend to run before they walk. I took a couple inches of slack, wrapped it around my neck, and ran with it but when it ran out I managed to strangle myself. Now I'm in the back fall stage. The ground is disintegrating from beneath my feet faster than I can run. I've pushed myself so much with the health and strength I had, picking up a job, pushing through schoolwork, getting my license, hanging with friends, forgetting my medicine, splurging from my diet, starting to run again, staying up late, and plain neglecting myself, that now I've run out of that slack and I'm disappearing back into reality. The joint pain is killer, I have headaches daily again, I can't bring myself to wrap my brain around my classes currently, my job takes all my energy left, and I have such a weak immune system from beating myself up that I'm sick with a cold that feels like the end of the world. The mood swings have transitioned to an hourly event, and I find myself fighting anxiety attacks, heart palpitations, and wild depression spells. I'm trying to keep my head above water but I'm so concentrated on just making it through the next breath of air, that I have forgotten how to be patient and strong.

Update, February 2012

I've been doing very well lately. Civil Air Patrol is progressing nicely, I work 4 days a week at the ski resort, two days inside two days outside, I have completed two classes since my worsened illness back in May and I'm catching up. Up until work I was doing very well. Now my elbows have developed extreme problems and I am suffering with what I believe is tendinitis that runs from my elbows to my wrists. My left knee has started hurting me again, probably from the walking and me starting running within the past two weeks. I have had a passing out spell and lots of dizzy, light-headed feelings. My head has hurt me occasionally, my knuckles are swollen, and my endometriosis symptoms have not been easy. My GYN did say she thought it was endometriosis too, which makes it a long-term problem. Aside from that I am completing my Spanish class and biology class currently and have 12 credits to make up. That's a lot of schoolwork. My trials have been great, but I have yet another supportive man in my life because God has favored me. I am happy even though overall I'm suffering physically. I will get better, and I'm trying to keep my head up. Deep breath, time to take on the world.

Moving Forward

Last Monday I got the clear from my Lyme Doctor and Tailbone Surgeon to move forward with my life. I got a job at Gunstock Ski area and will be starting in mid December. My first orientation is tomorrow! I finished Driver's Education and got my green slip last Tuesday, will be getting my license before my job begins. I started catching back up on World History and Earth Science work i was stuck on, almost completely finishing World History in two days, with higher than stellar marks. I've met a few friends along the way and started hanging out more with the people in my life, including overcoming a break up which was very emotionally challenging. Sickness can mask many feelings that a couple knows should be dealt with, but instead find it easier to just ignore. That was only one small thing I discovered about my new found health. Just last night I went to the Civil Air Patrol wing near me, and decided to join. Civil Air Patrol is a youth volunteer auxiliary of the Air Force and will lead me to being a part of Emergency Services and enlisting when I graduate High School into the Air Guard. I actually auditioned for a school wide talent show with my guitar and voice and made it, so I will be playing in front of the entire school, staff, and any parents or additional on lookers. I am so excited to be branching out to the world and exercising again. I feel alive and free, and at the same time I'm trying to hold myself back so I don't overdo myself because I'm still on the Picc line for my sixth month and coartem for my third month. I could at any point encounter a relapse, but a good friend of mine once said: "The secret to having it all is believing that you already do." (Jill Russel). I Believe I have all the health I need to make it the rest of my life satisfied, but the best part of being a teenager is actually being a teenager, so I'm eager to embrace this era.

Recovery from Surgery NOT as Expected

When I arrived for surgery I was scheduled to be rolled into the OR at 4 PM. I Wasn't actually rolled in until about 5:15 PM due to a delay of doctor communication. Basically my PCP never sent over the note that she physically examined me and cleared me for surgery. By now we are very used to the mishaps between doctors and their disorganization.

The surgery went well. Final report was that the bone was fairly long and sharp and was twisting instead of curving causing extreme as I re-injured it endlessly by sitting, snowboarding, skiing, horseback riding, etc. As this was probably a genetic defect in the Coccyx itself , It was definitely nothing any other doctor could have helped and it was time for it to be removed and the area to properly heal. The procedure caused excess bleeding, more then normal, from inflammation of either the Lyme bacteria in the injured area or the tailbone injuring it continuously, but basically it bled a lot.

After the procedure I was in so much pain I didn't even want them to bring my mom in but I was rolling onto my stomach screaming as soon as I woke up from anesthesia. We stayed for 3 days with no answer for the pain and I fought the grueling hour and a half ride home from Lebanon in pain. Then I suffered through days on 6 mg of Hydromorphone (stronger then Morphine, 4mg is maximum recommended dose). Finally we took me off of Hydromorphone and raised my Ibuprofen level since its an anti inflammatory and I usually take 800 mg anyways. That was what made the most difference. I took Tylenol Cod #2 at night to get me through and faught the days until now, 3 weeks out, I have equal amount of pain as I suffered with for 2 grueling years before surgery. I am back in the driver's seat, preparing for the upcoming ski season, going for walks to begin to build my stamina slowly. Everything is falling into place with the tailbone recovery, now we just have to finish the rest of my recovery process.

Surgery # ? (Coccygectomy)

I have been chasing the doctors in circles about my chronic tailbone pain, trying to get answers. Multiple times I've posted on this blog about it. Literally, a pain in the butt. Finally, we saw an amazing orthopedic specialist through Dartmouth in Lebanon, NH called Dr. Bernini who has told me I am a good candidate for a Coccygectomy or tail bone removal. He said that a normal person has a sacrum of fused bones and at the bottom a flexible coccyx of 3-5 bones, but mine is only two stiff bones very near the skin causing coccydenia (coccyx pain or tailbone pain). We asked if it was a degenerative feature because my mother ad her mother also had coccygectomys for coccydenia. He replied that only the Maharaj's in India were known to have long coccyx as a sign of royalty.

So, on October 18th I will go in for my surgery and get my tailbone cut open for the second time and go under anesthesia for the millionth time in hopes to be part of the 90% whose pain was eliminated with such surgeries. It should be a couple weeks of recovery and hopefully not a rough first few days. Deep breath, maybe I'll finally be able to horseback ride comfortably.

Walk Before You Run

As I start to feel better every month I am tempted to increase my activity level. After all, its healthy to be out and moving right? Well, I notice more crumby days then great, and I can tell I need to slow down. Even though (as long as I avoid fluorescent) the speech and walking isn't my main issue, I still have vertigo, fatigue, sleep problems, stomach pain, and achy joints. These are enough to keep me in bed on a bad day.

Its often seen that people who start to feel better want to act it and reach out to their previous activities including staying up late, avoiding naps, splurging from a diet, doing activities that are too strenuous like moving furniture, standing for half the day or the whole day, walking more then a mile straight, shopping under that terrible lighting for long periods of time, and forgetting their medicines. These are just things that send you right back downhill twice as hard. I know someone who was sick with Lyme for only a year and even though he felt better after a few months of treatment he still didn't resume to his regular activities until a full year later. Because he gave his body that much time to heal, he still to this day, 3 years later, has not had a single symptom and is resumed to being a star alpine ski racer and coaching his kids.

It's important to be patient at this stage, no matter how much you miss life or think you can handle it. Get little cheer people in on your plan to stay in bed for a month or two and to stay on the sidelines another few months, that way you have more than will power holding you back.

Missing Life

There are times where being chronically ill just gets old. Now is one of those times. When I started to feel better last year I was so happy and thrilled. I started making friends again, and keeping up with them by texting constantly. I attended rock concerts and even labeled myself as a booking agent and hooked bands up with each other, attending weekly shows sometimes. I kept busy throughout the summer and joined an outdoor program where I hiked many key New Hampshire spots like Cannon Mountain, The Flume, Artist Bluff, Franconia Falls, Waterville Valley, and Lafayette Mountain. We visited beaches like Wellington State Park and Hampton Beach where I had endless energy swimming and playing football and volleyball. That is where I spent almost all my time talking and hanging with friends, and then met my boyfriend Tyler. School started and with a busy homework load and crazy schedule I decided to push it a few steps further. Along with joining student council and picking up horseback riding I added a daily running regimen to the plate and on weekends attended my beau's football games. When winter rolled around I joined the Alpine Ski Team and pushed myself as hard as I could as I felt the ground beneath me collapsing. That's when I went down hill again, pushing myself overboard and stressing myself over the edge of a cliff. Now, 10 months later, I wish I could live it all again. I spent this entire past summer in a wheelchair, attending therapy and being left out by friends, unable to enjoy even a nice dip in the pool because of my Picc line. It is hard to go back ten steps, but even harder to go forward 10 steps and back ten leaps! It's almost a feeling like I've been taunted by health, and now I'm forced to suffer in a bath of 'patience'. I sit in bed and hope, pray, and wish for the life I miss to return, even if it's not the same as it was before, I still would like to introduce myself to someone without Lyme hanging over my head. To be normal is to be free, but currently I'm a caged bird with clipped wings.

New Therapy Pet

The day I went in to the hospital to have my first dose of the Invanz, we saw a sign on the way home. It read free Main Coon Kittens and we turned around to go back. My mom's always wanted a Maine Coon cat and I've wanted a chinchilla since my Hamster died a month ago. This would be better and cheaper then a Chinchilla.   We discovered it was a litter of 2 boys and 2 girls, pure bred, Maine Coon kittens. I fell in love immediately with the first female, the other female was the runt, and I took her into my arms naming her Pippin. She was docile and soft and so loving to me. The first day and night she slept, and then she woke up. Shes been exploring and jumping and playing and keeping me up at night since. I'm allergic to cats but not bad, but this one sleeps right near my head and aggravates my allergies. There's no way I'm returning her, shes mine and I love her, so I will suffer through to keep her with lack of sleep and headaches and a stuffy nose. As she gets bigger I will brush her daily and get her spayed and declawed. Shes already treated for fleas and ticks and I'm keeping her indoors so I'll put a Hepa filter in my room and change my sheets weekly and ask my PCP for some more Nasonex. This is a very sweet kitten, and such good therapy to have something to baby.

Switch of Infusion Antibiotic

My last Lyme appointment went really well, we decided there was notable improvement but we also decided, thanks to insurance coverage reasons, that I should start an every day infusion of the next level up. It's in the same family as Rocephin but it's a bit more powerful and expensive. The Insurance company approved this with the thought that I would get better with this final punch but we are unsure how the approval of the next month of med.s will go. I believe its called Invanz. Since switching, which I believe its been less than a week, I have been super tired. I've had headaches, I'm just really under the weather. I was told I need to keep on the diet 100% and I haven't been able to yet but I need to. I've been doing major detoxing which I will talk about in another post, and hoping that would help with the switch. Currently I'm trying to be patient and see if we can get me back to running and skiing.