The love of My Life

It was a cool Saturday night in Georgia when I got in the passenger seat with my uncle to head to the movie theater in town. I was in jeans and a hoodie, nothing special really, but no need to dress special because it was just a night out with a friend and my uncle. I was nervous that the man coming to the theatre would already be there when we arrived and I wouldn’t recognize him from the brief picture I saw online. I was also nervous that he would be a total dweeb and end up embarrassing me with my uncle right there. All the emotions would build up and I would probably cry before the night was over. My anxiety was taking over and I felt my hand start sweating again. It was this darn annoying problem I had had since I was little. The most embarrassing dates usually ended with a sweaty hand holding experience and I would leave mortified. As we waited in the line with the breeze on our backs I searched my eye feverishly on the sea of faces in the line in front of us in hopes that if he saw me he would have come up to me and said something. I prayed he would show up. I prayed he would behave. I prayed he would not be a complete loser. I prayed he was not there sitting in his car staring at me from afar creepily while he planned his attack. My mind traveled then to attacks and the movie we were seeing. It was a busy night at the theatre and the line traveled further and further behind us down the sidewalk. Suddenly a face appeared in front of me with a puzzled expression. I stopped dead in my tracks and breathed with relief as the friend was now in front of me, and normal looking. From his hand a long stemmed rose extended towards me and my heart raced. I squeaked the first thing that came to my mind as my uncle turned around to see this happening: “You were supposed to be just as friends!” and he started a chuckle that I would grow to know so fondly. My uncle chastised me for shooting down a southern gentleman. That was how it all began. From there on we grew very close very fast. He helped me clean out my grandfather’s barn, he helped us herd cattle, he brought me out to dinners and we took long walks holding hands. He talked to me for hours on the phone while he was at home in Madison, Florida between working as a correctional officer. Within a few months we had talked about everything I could imagine, and I felt more comfortable with him then I had imagined. He started looking for a job near me and got hired instantly at the town police department. Then he had to move to Tifton and start doing the police academy that they sent him through. I saw him every weekend and sometimes even after work. It only took until March for him to take me back to the movie theatre at 11 pm one evening on our way back from his friend’s house that I had just met. He stopped the car and I pushed him to tell me what was going on. Like something from a dream he opened his car door and went around to mine. As his hand extended I unbelted my seat buckle and steppe out into the cool mist of the night. He led me to the sidewalk and told me how good it was to be back in the same spot he saw the woman of his dreams. Down on one knee I was asked to marry the love of my life and I squealed yes through the tears of joy. He held me and brought me home to tell my grandparents. I called my mom and talked her ear off about the wedding plans almost daily for months and months until the day arrive in August. It was supposed to be September 27^th but through our time getting to know each other we found a house we liked just a few towns over and got my mother moved down here by July 11^th. I didn’t see any need in waiting any longer. I was now working at the newspaper in town as the hospital ended up being a catastrophe. I got to invite all the employees from there and we got our venue for free at the local public park. The ‘park’ was actually a fishing area so we got married out on the end of the dock as ducks swam by and fish rolled beneath us. It was mystical and a perfect day. (I will post pictures and more about the wedding later.)

Liver Problems

The past month I have suffered sever nausea and spent some nights hanging over a bucket all night, as well as fatigue, migraines, dizziness, weakness, lack of appetite, weight gain, dehydration, bowel pain and discomfort, and we thought it was because of the switch of medicines. Now we find out from a call from the LLMD nurse that my liver levels are  fairly elevated, more than three times the normal amount. I was taken immediately off of all my oral antibiotics and put on Milk Thistle for liver support. I'm still nauseas and ill after a week so tomorrow we will see what the liver test comes back like for the second time and depending on the results I may have to get a liver ultrasound to make sure nothing is severely messed up in there. Maybe after we figure this road block out we will be able to get me feeling near normal. It's amazing to think that even with liver inflammation I have been horseback riding again for the first time in two years, working for four days, attending an outdoor music festival, blasting through schoolwork, and possibly even receiving a promotion in Civil Air Patrol this upcoming Thursday night.

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.

Post Surgery Recovery, Lyme Symptoms After Clindamycin

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

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

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

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

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:

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

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.

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.