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!

Lyme Disease Conference and New Book to Read

I forgot to put a post on how the Lyme Disease Conference in Laconia went! Nancy Bourassa did a great job and I got to see Violet Snook's new book that she wrote on epilepsy and Lyme Disease. She is leaving Friday to spend 3 weeks in Pennsylvania training with her new seizure alert dog. I think it's a great experience for her! Just bought a copy of it today, it's called 'Behind the Artists Eyes'.

At the conference, I got to see many familiar faces and listen to Julia Greenspan speak about the connections of Lyme being worse for females than males. Different body types, attitudes, genders, and even races process things differently from one another, including how to combat and respond to the Lyme bacteria. All the speakers did a great job, I had to leave before hearing the last one speak which was my own MD, as I wasn't feeling well. I was in the wheelchair struggling to perform the maneuvers necessary to step forward for the following two days afterwards, until I had the gall bladder attack the second time and ended up in the hospital. Thankfully I'd been walking that day so I didn't show up to the hospital in a wheelchair and have to explain that. They actually used my Picc line for the first time to draw blood and give IV infusion of medications which made me so happy.

So seeing as this post has been sort of all over the place, back to the main point. Here are some pictures of me at the Lyme Conference interacting and gaining even more valuable relationships. In one picture, I am being recognized as the 'Famous 20/20 girl' in front of the crowd. The others were with fellow Lyme inflicted people and of course, the first one with the boyfriend I got into a Lime green shirt. :)

My good friend Cathy!

Lime green toe nail polish, sharing is caring.

Entrance way, greeting new people.

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:

Sudden Onset of Abdominal Pain

Two weeks ago, and I may or may not have posted about this, I was stricken with sudden upper abdominal pain. It grew to the point where I couldn't breathe and stretched the width of my rib cage right beneath my ribs. I have felt a lot of pain in life, with the surgeries and ovarian cysts and all, but I thought that was the worst pain you could possibly feel. My PCP didn't take it seriously as it had passed after about 3 hours and said it could just be an upset stomach. With great frustration I got an ultrasound the next morning and was told that if there was anything on it, we would get a call within 24 hours. A week and half later I assumed it was clear and all was fine. Then I tried to go to bed last night, like any regular night, and it started again. After 35 minutes of it getting worse and worse to the point I could not breathe but a small gasp and I was dizzied with pain worse than the last 'episode'. I finally gathered my pride and woke my mother to beg her to haul me to the ER. We tried to avoid it at all costs but there was no way I could survive any longer, the whole car ride filled with constant moaning and wreathing in pain. I told her to just shoot me and get it over with. Basically the doctor said the ultrasound read that there were gall stones. After doing blood work and a urine test, they sent me home with pain medicine, anti nausea pills, and a puke bucket, and told us to contact my PCP again. This morning I was not able to sleep after getting home at 6 AM, and instead spent the two hours vomiting my brains out in a pink tub on the floor. We rushed to the doctors office to be sent home yet again in no rush. Obviously these doctors have not had gall bladder problems, if this is even gall bladder. I get another ultrasound tomorrow morning and meet with a surgeon on Friday. Hopefully we can get some answers and figure it all out before the end of next week. My birthday is tomorrow and I will be spending it getting up early and being in pain at the hospital getting an ultrasound for the morning. Oh joy, the life of a Lymie.

Relapse from The Past Week of Stress

http://www.youtube.com/watch?v=aNOxlAxX_tQ&feature=youtu.be

Link to Youtube

Here is an easier way to view all my youtube videos from last summer to now. Click the link, or copy and paste into your URL bar, and view all the videos instead of just the four previewed videos at the top of the blog.
http://www.youtube.com/playlist?list=PLF64C13DFAD339559

20/20 Preview for Tonight

http://abcnews.go.com/blogs/health/2012/05/18/teen-blames-russian-accent-violent-seizures-on-lyme-disease/

Here is the link to the preview of the 20/20 special on tonight's show, including my story. Feel free to comment below on this post after the show as well. A link for those who may not be able to see the show but would like to watch it tomorrow:
http://abc.go.com/watch/2020/SH559026

ABC News, 10 pm EST

NH Lyme Conference, 'A Team Approach'

This upcoming Saturday, the 19th, our second annual Lyme Disease Awareness Conference in Laconia, NH will take place, run mainly by the Lyme411 Lakes Region Lyme Support Group. This is an event where Doctors and other educational speakers will talk to the general public and other health officials about Lyme, its management, treatment, and a team's job to overcome it. A Lyme Disease literate MD will be speaking on Saturday, at Beane Conference Center on Blueberry Lane around noon. I'm excited to see what he will bring to the table as I have not heard him speak at an engagement like this before, and I'm sure many people will have their eyes opened to the subjects on his agenda. Julia Greenspan, a well known Lyme Literate Naturopath from New Hampshire will also be speaking on  Lyme and Tick Borne Illnesses. She was interviewed on WMUR within the past 6 months, and is a nice addition to the speaking team. Also a licensed RD or Dietician by the name of Marilyn Donnelly of Concord will provide insight into the team approach as well. Hopefully a good turn out will enjoy the speakers, and take the time to come say hello to me in my lime green flip flops and skirt.

For more information visit the conference facebook event page at: http://www.facebook.com/events/383213395052874/?notif_t=plan_user_joined

or comment below.

The Beane Conference Center is at 35 Blueberry Lane, Laconia, NH.
Hope to see you there! Event flyer below.

Thanks to Viewers!

I have had a blog for my experiences with Lyme Disease for about 4 years. It came and went, my brain being unable to write out the posts, or the lack of motivation of having 10 to 0 views daily keeping me from taking the effort to blog for months at a time. At one point I did not update the blog for a year. I had 4 followers for the longest time. This post is just in extreme thankfulness to the viewers of this blog. In the past three days I have had more viewers, friends, supporters than I ever thought possible. Right now this is the only thing I have been able to wrap my brain around, and schoolwork is not even an option with my concentration problems and eye sensitivity. My memory is gone which makes it impossible to finish courses that I don't remember starting. However, I now feel a sense of purpose to update this blog more regular. I can see that my views traveled to 300, 800, and then over a thousand in just a days time and I know have views from Jordan, Gabon, Israel, Australia, Russia, and the Netherlands. That is so inspiring it makes my heart swell. I plan to put more posts out there and keep this modern and updated for the now 20 followers that are just Blogspot members and who knows how many email followers. Thank you to you all!

LymeDisease.org Features Article for 20/20 on Friday

http://lymedisease.org/news/touchedbylyme/lyme-teen-2020.html

LymeDisease.org, formerly known as CALDA, posted an article about the 20/20 episode! It's just 36 hours away or so! I hope everyone can watch, and we pray hard for the editors wisdom in displaying the message properly in those 10 minutes.

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!

Mother's Day and ABC News' 20/20

On Friday I got an email from the 20/20 TV show on ABC news. They are doing a special this upcoming Friday at 10 pm on kids with hard to explain illnesses. They saw my videos that my mom just made public on You tube two weeks ago, and tracked down my blog and decided they wanted my story to be one of three. I feel so honored to show the trouble of Lyme to the country and be a spokesperson in a way for this disease and advocate for other teens suffering with similar problems. After this huge news I attended prom trying to put it in the back of my mind and I spent all Mother's Day cleaning house and eating ice cream. Finally today we got to get some good footage of me in regular day to day activities including at the horse farm with Miracle and on the couch with Mike and even me eating at Dudley's Ice Cream near the mini horses. It was overcast and sprinkled throughout the day but it was still good lighting. Now as they have all gone home I feel like crashing. I'm so tired from two days of stress and forced smiles that I just can't wait to lay in my bed and stare at the wall. Early in the morning I'll be leaving to attend the interview sessions taking place in my Grandparents living room for the morning. Then the crew will meet with my doctor in the afternoon. A long week ahead, but for now rest so I can handle tomorrow's excitement.

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.

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.

Nastar Racing

Today I woke up to 2 inches of fresh snow, white outlined trees and sun sparkling through the crystals all over the ground. It's finally begun to look like winter in my neck of the woods, and I used the opportunity to embrace it and complete my first race this season. I bundled up in my new skin tight racing suit called a GS suit and hit the slopes with my friend from the school race team, Kayla. We did 6 runs for ten bucks and had a blast, and I ended up getting third place and receiving a bronze medal. There is a light at the end of every tunnel, and if I can persevere through a PICC line, two sprained fingers, tendinitis in both elbows, knee pain, and sight problems to take third on my first race of the year than I can make it through anything. This was the renewal of hope I needed in my life. A sure spike to my confidence level, and a pat on my sore back to encourage me to keep my chin up! I will be looking into more races in the future, and definitely picking it up more next year.

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.