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.

Partners in Health and Teen Lyme Support Group

In New Hampshire, there is a program divided by communities for children with Chronic Illnesses. Lyme has recently been included in the definition 'chronic' and this program now includes me in their activities and offers me assistance. They are waiting for some paperwork back from my Lyme doctor but aside from that they will be able to provide a lot of help to me with disability, medical bills, recreational activities, and the new Teen Lyme Support Group they are starting for the Lakes Region. I was going to start a support group for teenagers and I may have posted on here about it before, but I was always too sick to initiate it. Now Partners in Health has secured a nice comfy room for us to all get together for two hours twice a month on Saturday Mornings. The plan is to call it the 'Lyme Lounge', and it will be a laid back support group type gathering on the first and third Saturdays of each month. On the third Saturdays, every other meeting, the parents can leave and go to the Lyme Support group at the Laconia Middle school for the time frame which would be 11am-1pm. That way us girls can have some time alone and get to really open up and the parents can connect as well. I really hope it becomes successful because a lot more people need to be educated about Lyme before this world really 'gets' it. I have been elected spokesperson for the group and I attend family council meetings to share how it's going and what may need improvement and will also be attending what is called the 'YAEH council'? It is supposed to get children active on educating the world around them on what it's like to be chronically ill. These few things should get me to where I want to be, advocating for teenagers disabled by autoimmune diseases.

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.

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.

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!

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.

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.