My First Job and Civil Air Patrol

Since my last post, I have attended my First Job's Orientation day which started at 8:30 AM and went until 3 PM. I had so much fun meeting my coworkers and touring Gunstock Ski Area. I have no doubt I'm ready for this job and excited to see what will prevail from it. I have about three six-hour shifts a week, Tuesday, Thursday, and Saturday evenings and that even gives me a day in between to rest and heal. One day I even work inside! And on top of everything, I get a season's ski pass for free, meaning I can ski and race this year. Gunstock should open on the 17th, or maybe even sooner and I'm excited to see how my first day goes. Time to buckle up and meet new people!

Also, I have attended my first two Civil Air Patrol Meetings. CAP is a youth volunteer auxiliary of the Air Force, and they meet every Thursday night. One of these two meetings was there annual holiday party which I attended tonight. There is two other girls in my wing, though I've only met one so far, and she is really nice. The other boys I'm familiar with through my brother's experiences with the CAP for his 4 years of service. He was promoted to Major tonight, a huge accomplishment as he moves on from this specific Wing to bigger and better things with college, and I admire him greatly. He is certainly my role model as I take on the responsibility to rank as fast as possible and catch up to him. My goal with joining the CAP is to concentrate on it's accomplishments and join the Air Guard as I'm graduating High School as a Physical Therapist and get my college paid for in full as well as medical insurance. Time to dream again, and it feels like I'm flying.

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.

ILADS Conference and Finally Coinfection treatment that works!

One of my newer med.s I have been started on is Coartem, a prescription Artemesia product which you take 3 days out of the month to fight Bartonella. My Bart symptoms are noticeably worsened including air hunger, swollen feet, fatigue, and more after taking the Coartem for about a week. I am close to taking my third monthly round of Coartem and prepared to start detoxing the dead bugs intensely. Another new medicine that I was started on was Tindamax. When my LLMD (Lyme Literate Medical Doctor) went to the International Lyme and Associated Disease conference in Canada he learned a lot about pulsing the Tindamax to treat Babesia much like The IV Rocephin for Lyme. You take high doses 3 days a week and detox the other 4 days giving the bugs a hit and run chance. The minute they run they get hit again and after much cleaning and detoxing we can eliminate the bugs and their harmful toxins from the body. Aside from Tindamax he doubled my Rifampin which is a huge hit to the body and turns urine a deep orange color, and I actually believe that after all these things were added and increased I've started either having Gall Bladder or Spleen pain that's not pinpoint able.

A Plus side to the conference is my Vermont LLMD Spoke and showed one of my videos from an episode I had with prominent speech issues and tremors. So without knowing it, I'm famous :) Thousands of doctors got to learn from the mistakes of 10 illiterate ones.

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.