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.

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.

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.