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.

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.

Post Surgery Recovery, Lyme Symptoms After Clindamycin

The count up is in full swing. Today is 12 days post surgery, and this post will be a full blown analysis of my symptoms. Too many people have asked how the surgery has affected my Lyme symptoms and vice versa, and I'd like to quench everyone's thirst for more answers. Surgery is a traumatic experience for the body, nervous system and immune system. There's many characteristics of me being someone with auto immune dysfunction that affect my recovery. First of all, I'm on an IV medication that's trying to treat my symptoms of fatigue, depression, anxiety, joint pain, muscle spasms and weakness, headaches, hot and cold flashes/sweats, insomnia, light and sound sensitivity, and so much more. Charting my progression of those symptoms is more difficult over the course of my first month of this treatment when you are adding digestion irritation from pain killers, fatigue from the narcotics and trauma induced with surgery, and of course worsened headaches from stomach pain, fatigue, narcotics, etc. It's a snowball effect caused by the initial problem, the tick borne illnesses! My gall bladder probably worked fine before Lyme and Bartonella's treatment of Rocephin through IV clogged it up. I may have never needed surgery to remove it if I hadn't introduced Rocephin due to the Lyme. What a cycle.

Another thing to keep in mind is that I have experienced prolonged adhesive sensitivity since the IV treatment. I could have had it sooner and just not noticed until my skin was red and itchy from the IV dressing. I have since used an IV 3000 dressing to reduce the allergy and been fine in the Picc Line area. However, the band aids and dressings for the stomach incisions caused worse pain and irritation than the incision itself did. What a mess! Below is a picture of the four incisions, three of them surrounded by bright red almost welted skin where the adhesive touched. As of today I decided to not use any band aids to reduce those problems. In a week I'll get another picture of my stomach and how the scars are coming along.

On top of all that I have been found to scar hypertrophically, an uncommon way that the body can scar for some people where the skin over the scar is raised and red and firm unless manually softened with therapy and vitamin E based applications. Hyper trophic scars are not common for everyone, but are similar to scar tissue build up that can cause nerve pain and experienced by many Lyme patients whose immune system is affected. (http://en.wikipedia.org/wiki/Hypertrophic_scar)

Last but certainly not least is the risk after surgery of infection that can be fatal, thanks to the low immune system Lyme gives somebody. I was concerned about this but seeing as they glued my incision closed and I didn't get the dressing wet enough to change it every day, It lessened exposure to the air and I have been able to keep the stomach clean and dry. There is a little bruising near my belly button but it's looking good and smooth. As far as the Bartonella and Lyme symptoms go, I slept literally all day yesterday and caught up on much needed rest from the past two weeks of stress on my body. Today I am more energized and appreciating my sublingual b-12 in 5,000 mg tabs That significantly increase my general well feeling. I have rested, made sure to keep up with my medicines, and taken magnesium and b12 daily. Those are the only two natural supplements that I notice a difference with. I sleep better, wake up happier, have more energy, fight less depression, and feel lighter. On the Clindamycin, I have recognized a noticeably clearer ability to process, think, and concentrate. I am still working on the memory and motivation, but that will take time and rest. I have started reading more to wake my brain back up and we are looking into a tutor to generalize my needs and get my education back on track. We are also probably applying to disability since I can't work and do school and get better. I'm just not a super woman yet.

Surgery Recovery and Response to Clindamycin (First month)

It's four days after surgery and I'm on zero pain killers. My head hurts and my stomach is aching with sharp radiating pains, but it's not any worse than other pains and being on narcotics is bad for your stomach and causes additional problems so I'd rather tough it out from here. I had a rough nights sleep last night on no medicine but part of that was due to being stressed out because of a relationship upset. Yes, I'm a regular teenager with average relationship struggles that come and go and sometimes can't be overcome and can end a great thing at a not so great time. On the day of the surgery I came home before 3 pm and was on Tylenol Codine and ibuprofen and whatever else they gave me through IV. I got to lay in my comfy bed and be in great pain. The next day I rested and spent time with Mike. I was in so much pain that he had to do pretty much everything for me including sitting me up since my abs hurt so bad, and feeding me. I couldn't cough, standing up caused me to be in so much pain while my stomach adjusted that I couldn't breath, and my abdomen was full of carbon dioxide from the laparoscopic surgery. There is four incision and one big one along the bottom of my belly button which makes five (there are two in my belly button I believe). Today I am feeling much better, my head is killing me and my stomach hurts worse when I move but in general I am much better than the past few days and I am happy for that. I see my Lyme doctor on Wednesday to discuss how the clindamycin is working through IV. I believe it has reduced headaches and brain fog and maybe even generalized pain, but I need more time to figure it out. Hopefully he won't change it for another month. Next post, on the new car!
Surgery:

20/20 Interviews Wrapped Up

For the past two days I had a national team on my property and in my life to get to know me. They saw my room and watched as I took medicines, wrapped my IV up, prepared for a shower, wrote a new blog entry, visited my miniature horse, ate ice cream, and performed regular activities. Nothing about the experience was regular however. It was surreal having strangers going to and from and putting a microphone on you and following you around. I'm used to just doing my thing pretty quietly but there was nothing quiet about the new visitors. We spent today doing interviews in my grandmothers kitchen 20 minutes away. Jay Schadler and I sat on the couch and talked for close to two hours, three quarters of that being intellectual interview questions. I had the speech problems all day but pressed on to do all that talking and hung in there while my mom and boyfriend were also interviewed. As quickly as they had swarmed in, they packed up and hit the road to track down my Lyme doctor and get an interview with him. Now that they have all the film they need, it is up to the editors to portray it correctly with the information and support we need in the Lyme Disease community. I'm in sweet celebration now for all the stress of it to be over and be able to sit back and watch the rest of the process take place. Maybe this will travel to other interviews in the future, or maybe not. As long as people can get a better perspective on the hell that is considered my life, that is all that matters.

 Interview time!

 Me Getting a Mic on.

Interview camera angle.

Prom 2012

I woke up Saturday morning I had a few hours to myself to think. I imagined myself dancing under a big moon with twinkly lights reflecting off of my dress and a princess tiara on top of my head. I pictured a man in front of me, so in love with the real me, the sick me, the hurting me, yet the beautiful me. The smile on his face would reflect in my sparkling eyes, and all of the pain and illness and disappointing and arguments from the past four and a half years would melt away to leave me in a state of peace even if only for a minute. That was how I wanted my second prom night to go. I did not want to worry about a medical diet and what food I could or couldn't eat, or who was wondering where I had been the past year. Most of all I did not want the worry of passing out or being carried home in a heap from Neurological Lyme symptoms. I spent yesterday getting ready slowly. I dabbed some polish on my toe nails that had not held up great from previously painting them, I put my makeup on in pieces, my mom rolled my hair and I sat looking at the beautiful flowers on the corsage for a whole hour or so. My date listened to me chatter about all the things I wanted in life and we planned on meeting my grandparents for beautiful pictures. The sun was out on the grass and a slight breeze kept it balmy and warm for the portraits. I tried to keep telling myself I was pushing through the crushing pain in my legs and torso for a good cause. That all the struggle was worth it. When we arrived to the school I almost passed out in the line for the prom march and had to sit down on a fold out stool my mom just so happened to have in the back of her vehicle. How embarrassing to see people walk by and stare you down, wondering why you think you are so special and can sit while they have to stand patiently in line with 300 other kids. I was upset and discouraged and hurting and sick. After the march I sat on a bench in the hallway trying not to cry. I felt out of place and judged and unwanted by my schoolmates that just did not get it. There was no table for me, yet again an outcast, and I was moved to a table by the teachers. The music was loud and pounded in my ears and flashing lights killed my eyes even covered with sun glasses. We decided to at least get our money worth of food before heading out and I suffered through the nausea for a plateful. Towards the end of our meal, the song 'Just a kiss' came on the loud speakers and I saw in Mike's eyes exactly what I was picturing earlier that day. I pushed my chair back and stood up, bringing him with me and we were the first to dance in front of everyone with that sparkle in our eyes, as our song reassured me all was well. In that two minutes of peace and happiness, nothing was wrong. The pain got bored and took a vacation, or I just ignored it, either way everything melted away to the sound of a few people clapping and cameras snapping. But I didn't care, I was living. Living for a few minutes more than I had in years. Loving so much my heart felt like it would break in two, and I was okay with that. I got home and did my IV after leaving early from the dance. Telling my mom about my many compliments I had received, I squeezed Mike's hand and was amazed that he would put up with someone like myself when there is so many other girls in the world. Then I remembered, I wasn't just any girl, I was Elaina. His prom date and his girlfriend and his best friend, that was what mattered most. I believe I accomplished fooling everyone into thinking I was healthy, for the most part. If you look okay, than at least you are doing one thing right.

May is Here! Back on Medications

After three Hyperbaric Oxygen Treatments through April, I discovered no improvement and actually felt worse after each session. The oxygen must have pushed the Lyme out of my tissues enough that it caused weekly depression spells that were debilitating. I decided that was not what I needed right now being in such rough shape. On the fourth week of my medicine vacation I found myself brought back down hill and almost into the wheelchair again. Memories of last summer's struggles filled the late Saturday night air, as I suffered from head and neck spasms, neurological upset, and speech problems. I took what medicines were on hand to calm the sudden episode from a day filled with activity that my body was not yet prepared to handle, and stayed in bed for the next two days. After the rest and much practiced handling of my symptoms, I was up again in no time preparing for an Air Force ROTC Ball. Yet again, the following Saturday night after the days events and the ball, I found myself downhill from exhaustion and suffering autistic-like symptoms and the speech problems all over again. A day later with some rest and I'm now again getting ready for prom. This is my Junior prom, my second year going and I am far more nervous than last year. Exactly a year ago I was carried home in a trembling mess with the most unexpected Lyme Disease symptoms. That gives me enough grounds to remember that frightening experience and move forward on a prayer for a better one this time. The Picc line has been in 11 months, and I am now being put on Clindamycin Phosphate for the persistent symptoms that were not touched by the Rocephin like we had hoped (along with Omnicef which I have tried once before and Zithromax for Bartonella Symptoms). Within the first six hours of my first treatment on the new medicine, I suddenly experienced a raging Herx reaction (A Herx is a positive response to medication that seems negative, better explained in my earlier post called the Herxheimer Reaction. It basically means the medicine is killing off the bacteria). It lasted for at least 48 hours and left me feeling dizzy, weak, restless, irritable, in a general state of intense pain, and nauseas. After that cleared it took me all my energy just to manage a shower and keep breathing. Since then, I have started with what we believe could be Gall Bladder problems. I had such great pain in the event of an 'attack' on Tuesday evening, I literally could not breathe and was scared for my life due to the pain. Whats worse then such a turn of events is the shock of being scared to enter the Emergency Room knowing that you will not leave with answers because you are such a unique case. That's the shocking encounter I deal with every trip to the hospital, and I have said many times that 'I would rather die in my comfy bed with my family and pets than at a hospital that doesn't know what to do with me'.

Hyperbaric Oxygen Treatment

As part of my drug holiday and to help me recover from lingering concussion symptoms, my Lyme doctor really urged us to try Hyperbaric Oxygen Therapy (HBOT). The office has a soft shelled chamber that basically pressurizes oxygen into your system while breathing 100% oxygen for different amounts of times. The thought is that the oxygen increase for the short amount of time increases circulation and oxygen levels to the point where people receiving the therapy notice improved energy levels and medicine effectiveness. Children receiving Chemotherapy spend time in the chamber directly after their treatments to increase the Chemo's effectiveness by pushing it into all the tissues. Concussion symptoms are noticeably improved by the oxygen increase to the brain and Lyme sufferers may notice more energy and less joint and muscle problems. This is an effective way of improving the benefits of treatment but it is out of pocket and fairly expensive. For one day, the next three weeks, I'm going to receive treatments to clear my concussion symptoms and help with whatever Lyme detoxing I'm doing on this drug holiday. Huge prayers that I can have the patience to lay in this loud machine for an hour and fifteen minutes every Tuesday morning and still be able to drive home afterward.

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.

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.

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.

Remembering my Memory

I just realized today for the first time in months that I remember what I did for my 16th birthday. I remember going out the Sunday before my sweet 16, and seeing Pirates of the Carribean 4, the plot of the movie with how shockingly good it was, even getting Jordans ice cream sometime in there, and eating at Friendlys. Tyler was away on senior trip, and the Lakes Region Health Fair was the day before (when Jake, Elisabeth, Ian, and Kaity showed up to see me). All the memories are falling into place where they belong, and the wall in front of them is slowly breaking down. On the third week of Rocephin, I already see miracles happening. I'm walking and talking normally, thinking fairly clearly, sleeping a bit better, and remembering again! Praise God, and hopes that I will only get better from here on out.

Picc Pain Passed

Its the third week of Rocephin treatments now. I notice no improvement other than the pain I had shooting down my elbow from the Picc procedure has diminished. It started getting better after 5 days of heat packs and ibuprofen. I'm much more comfortable with moving and using the arm now, and even sleeping on it. Though it took me 2 weeks to get a real shower and the wrapping it up process was not fun, I have adjusted. My mom does the IV treatments every 12 hours for 4 days a week. Shes comfortable with keeping it clean and we are careful not to get the tip dirty. We have a fold up light weight side table or TV tray that we cover with the medical sheet and use for our treatment area. When the weekly VNA (visiting Nurse) comes to change the bandage she likes to have an area to set up shop. We noticed problems with the little blue line kinking because the butterfly was not up high enough to keep it straight, and therefor I had troubles with the IV treatment for a week, but she fixed it so it doesn't kink and I can do things while getting my treatment. Having the Picc in is not the end of the world, its a challenge to not get it wet in the middle of the summer but it is manageable. Now I'm just trying to do visualizations and rest enough to let the medicine do its job.