New Bigger Bed

Some of my posts have been delayed by the whole 20/20 experience along with the gall bladder problems all at once in the past few weeks. However I did want to follow up one of my earlier posts. I was looking for a bigger bed to fit my mom on it with me and give me more space to spend the long terrible sick days in. We found a beautiful mattress box spring and frame set from a college student for $300  a few weeks ago, and picked it up with the help of my boyfriend and his dad's truck. Then we ended up selling the adjustable bed and making back $200 to ease the financial burden. Now I've just been looking for 400-500 thread count sheets so I can really enjoy the experience of having a bigger bed and spending 3/4 of my time in it. When the news crew contacted me I had just finished setting up the bed and getting my room all clean and gorgeous. Today I just packed up some random cluttering items and my old sheets and bed skirt into a tub and slid it under my nice new storage space. The smile it brought to be able to put stuff under my bed made me want to post and update everyone on that situation. I get my surgery tomorrow Morning on my gall bladder at 7:30 AM and I will be able to recover in the nice big bed for the next few weeks.

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.

Hyperhidrosis

'Hyperhidrosis' is defined as the condition of abnormally increased perspiration, more so than is needed for the regulation of body temperature. For about 10 years, since I was just a little girl, half of the back of my left hand would on and off drip sweat. I'm not talking drops, I'm talking soak through my sheets, drench paper towels, gather into a stream on the back of my hand type sweat. It has only been on the back of one hand, and I never understood it. I do not at this point believe it is connected to the Lyme, but I think the supposed Babesia with symptoms of night sweats and endocrine problems, could be worsening it in the past five years. I went to a dermatologist when I was in fourth grade, but he was not sure what it was and had no solution for me. Deodorants have worsened it instead of helping, and I never knew, this entire time, what was going on or that there was a name for it. Every doctor I had seen said it was the weirdest thing they had encountered and had no help for me. They said I was the only patient they knew with such a problem. Recently, my PCP told me I had reversed sweat glands on my left hand, so they were on the back instead of the palm. My right hand is fine, but not the left. Sometimes in the winter it gets so bad I can't wear a glove on that hand or I sweat straight through the water resistant winter glove! This made working at a ski resort and ski racing so difficult. Finally I found my way to google and typed excessive hand sweat, and that led me to a new door opening up. I found my way to the International Hyperhidrosis Society, with information and tips on treatment and even a doctor locator. http://www.sweathelp.org/en/

I found one doctor and got a two week appointment with him, which I saw last Monday. He was quiet and conclusive but had terrible bed side manner and I will not be returning. He wrote a prescription for something to put on my hand, did not tell me anything about it, and sent me off in the matter of a few short minutes. I have an appointment saved with a doctor at Manchester Dartmouth-Hitchcock Medical Center in Manchester, NH and will be seeing him in August to get a second opinion and see what he can do to help. I hope this post may find someone else suffering excessive sweating that needs a direction to be pointed in as well.

Handicap Accessible

For me, a relapse comes as a form of aftermath. Sometimes it lasts days, sometimes a week or more, but it always happens after a big event or sequence of events that take me pushing through multitudes of stress and fake smiles until I collapse. Usually I don't feel it until I get home and start to relax and wind down and then my body crumbles into a heap of crippling pain. The neurological symptoms of this disease are life altering and disabling. My legs crumble and shake with fatigue, and I lose track of how to lift one leg up enough to step forward. Usually I end up just falling forward as my knees buckle and bend beneath me. Sometimes it is first thing in the morning before I even know that I can't walk, and usually I end up hitting my shoulder, head, or side on some object, be it furniture or a book on the floor. After navigating the house many times, weaving through laundry baskets and doorways to reach my destination, I have gotten pretty good at maneuvering a wheelchair from point to point. Some sufferers, especially those with Picc lines, have a harder time moving around than others. The stores I have been in have had very inadequate handicap facilities and I'm determined to go on a crusade and raise the awareness of it. A store owner should be able to maneuver through his entire store, bathrooms, doors, even work room where employees are, in order to call it accessible. I've seen bathrooms that my mom cannot get into easily, forget a wheelchair and a second person. It's messy and difficult and a challenge. This reminds me that I'm not normal, no where near it, but I'm okay with it because one day I will make it so other's can at least feel closer to being normal.  It's hard to be in a wheelchair, and harder to feel so dependent on the spaces around you. You find yourself saying 'Well I can't stop to eat there or there because I can't get into their bathrooms', which is a sad thing. People should not govern their decision because of the accessibility in an 'accessible' place. If it's not friendly to the handicap, then it shouldn't be friendly for the well. For this reason I am going to start a blog website for handicap accessibility. I'm going to post pictures and descriptions of all the many places labelled accessible and how amazingly difficult they are to navigate. I hope to get a lot of support on this because one day I would love to take it to the legal level and pursue laws and restructuring of the 'accessibility' definition! I'll post more when I do find the patience to pursue that path.

Relapse from The Past Week of Stress

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

Review of 20/20

When the show began you could hear a pin drop, but the minute my face came across the screen for a small advertisement at the beginning, I was squealing and so thrilled to see myself on TV. Anybody would be. However I was nervous that the editors may try to make it look like I was crazy, healthy, and needed to be off of medicine. They didn't do that. The show was a gracious 10 minutes of me time and it opened many eyes, connecting foreign accent syndrome with Lyme Disease for the first time and bringing up coinfections on national television. Here is a link for those who did not get to see it:
http://abc.go.com/watch/2020/SH559026/VD55204215/2020-518-medical-mysteries

For the rest, we all agree. The time frame was stressed, an hour would have been nice, but they did a good job covering my story with the time they had. They concentrated a lot on prom and how there was hope for the future instead of my current lacking health, but I appreciate the producers soo much for taking my story on and working with me last minute. Even coming to NH for the entire interview process and fitting it in for two days. It was a blessing to work with them and the film crew, and a bigger one to see the result. Already, five others who thought they were alone have contacted me, saying they had accents too! I am thrilled to open many people's eyes and to connect with people to let them know they are NOT alone. Most of the world is on their side, and I'm an email away!

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.

Hired Camera Crew for 20/20

A crew from Boston called Pulse-Media got to know me fairly well the past few days. They were hired from ABC news to travel to my house and perform the mobile and sit down interviews with their team. I have never felt so at home with cameras in my face and people listening to my every breathe. They were friendly, personable, yet professional, and all around amazing. I recommend them as the best photography and film company I can imagine. We had a good time at the miniature horse farm where they met the animals and we all just hung like best buds. Then they managed to make me comfortable in the sit down interview and even snap some pictures for me! Here's the website if you are interested in viewing:

http://www.pulse-media.com/pulse-media/index.html

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!

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'.