Search This Blog

Friday, December 28, 2012

Update: Side effects of Levaquin

At my last appointment with my Lyme specialist about a week ago I was put on Levaquin, Zithromax, Omnicef and Coartem. This is a regimen that last year at this time when I was doing really well I was on, along with IV Rocephin that I had already been on for months. The problem is that last year before my concussion I dealt with some really painful Tendonitis in my elbows while working. This year, after just five days on Levaquin, I can feel it in my wrists and traveling up my arms. Its incredibly painful, to the point its hard to type and drive, and the side effects do list that as a concern. The doc switched me to a different medicine in place of that but I will probably be dealing with the lasting effects of the Tendonitis for a week or more. I still have to work, but I did end up taking a few days from work off so that I don't have to do four days in a row with extremely painful wrists. Now I just wait to see if it helps at all. In the meantime I just keep chugging, and trying to keep my head above water with all the current symptoms I'm facing. I do have a loving friend base to get me through this time and for that I am forever grateful. The New Year will hopefully bring new health and new hope and new love, and I am excited to turn 18, feel better, kick this Lyme and start a new life path to forever.

This is a picture that was taken of me a few years ago when I was feeling well.

Monday, December 3, 2012

Neverending Struggle

Since the PICC line came out, every day has been a struggle. The medicines I am on don't seem to touch my symptoms, detoxing is a chore, and my stomach has grown so sensitive. I spend nights nauseas and mornings tired and sore. I search for answers to my questions inside, instead of reaching out. My depression is off and on since a recent break up, and I just keep smiling. How much strength it takes to look in the mirror and say to myself, 'None of it matters, you are beautiful, and no one can even tell you are sick! Now just convince yourself you aren't!'

If it only was that easy. Today was spent in the doctors office again, trying to decide about a case of what feels like walking pneumonia. The Physicians main concern is that liver inflammation can hurt just the same, and a cough could just be irritating a secondary problem. She ordered blood tests and a hundredth ultrasound and recounted how my lungs sounded clear even though they hurt like a helium filled balloon popping. Yet again, I recount how my life is never boring. So in two days I will get the ultrasound and hopefully know by Friday what is going on with my delicate body! I have been waiting for the approval and word of the local organization that is supposed to be supporting and assisting with the local teen lyme support group in order to get the email group started. It has taken a lot longer than it should have! I just hope they get started soon, because I am ready to open it up on my own accord and try it out to see if I can perfect starting good thread conversations. I just wish I had more patience and energy to undertake such a huge responsibility. This is why I need some support and help from healthy people! I should be on the radio the week of the WLNH Children's Auction( 98.3) speaking about partners in health and the Lyme Disease a little bit. Hopefully I can hear the voice clip before then because I haven't gotten any word on that yet either. Crossing my fingers! So this is the extent of my current situation, still struggling and sick without answers, growing new hope, meeting new people, starting my part time job again soon, and hoping to finish school before the end of the summer. I need serious prayer to get me through such activities so I can keep remembering I have a purpose and need to keep reaching out for it!

New Beginnings

My life is never boring. This is something that I came to terms with years ago! After the blood clot healed I realize I still have some pretty frustrating symptoms and my health is definitely a concern. But I have been worse in the past, and I am not as concerned to stop everything I am doing to keep my spirits up. Getting out and continuing pushing through is good, I feel like it is mandatory to not succumb to an illness that for some can be deadly, for many disabling, and for all frustrating. I try to highlight the ups instead of the downs, so to speak. For my friends wondering how I truly am doing on the inside, I am having a hard time. Holding myself together has always been a challenge I've faced, and not one with an option of losing. I am a fighter, not someone who flees the scent of a solid challenge. Within the past few weeks I have driven myself into the honor guard through the civil air patrol and embraced my ability to teach and inspire 10 new members! I make it fun fr them as much as I can, because there is only so much fun we can live without in life. I share my passion of feeling the practice rifle whipping around my fragile body with the honor guard, and we all laugh and forget all our troubles. Our performance is Thursday night, the perfect chance after three weeks to show the world how these kids can do amazing things when lifted up! Carpe Diem!

Being sick is hard enough, but adding regular daily life struggles on top make it almost impossible. Right when I feel like cracking and just submitting to the pain and depression building inside, I concentrate that fatigue and pent up anxiety on a hobby, passionately fixating on it to give me a reason to flourish. This buys me the time until I can rebuild that confidence and keep swimming deeper into the blue unknown of my future. With college coming up and things vastly growing into new opportunities I find it hard to settle on the thought of being settled. After all, my entire teenagehood was spent struggling day to day, fighting for normalcy, and stressing myself to keep smiling. At this point I'm not ready for college, for life. I find myself in the position of many ill teens, I just want to live my life before it has to live me! I think daily about the chance to feel well for a week, and what I would do with it. For me it would be like winning the lottery. I would throw away all my common sense, and travel the country, then the world non stop! I would pull an all nighter, embracing the chance to not have to sleep 10 hours straight in order to get out of bed in the morning. Bringing my family and what few friends I enjoy with me, I would experience physical pressure that is ensured in skydiving, surfing,  scuba diving, a marathon! In reality those dreams crash, I don't want to dissapoint myself after all. Plus, there is no need to jump out of a perfectly good airplane, or climb a wave that a shark might be readily beneath. I still have fun in other ways meeting new people, waiting for health, learning new songs on guitar, feeling the sprained fingers after perfecting a more intense spin with a rifle, and watching the glow on the faces of people I can touch emotionally and support with my whole heart.

I am returning to church once again, and it finally feels right. My ideals have been so strewn after years of learning different concepts and researching the bible for myself. I spent countless hours crying for the Lord to just take me away and he never followed through. Now all I can think is how lucky I am for those unanswered prayers. This new church makes me feel alive, like I belong. They remember me and include me in the new youth group. The worship swells my heart and the teachings fill my brain. I get it, finally. The happiness, the surrender, the hope, the light. Like nobody ever would imagine, I find myself thankful for everyday small things again, the baby fish in my aquarium, the sunrise at 7 am, the beat of a flowing song, the smile of a stranger. I hope I can bring other people to this point, where joy is not just an adjective but a verb, flowing out of me in the smallest sometimes most invisible ways. I wish I could bottle up hope, even the tiniest bit of it that I have left, and share it with the world. Empowerment is a strong feeling, and I feel empowered to change the world even if I don't know how to go about that.

Sunday, October 28, 2012

Ups and Downs

With so many down spirals I found it hard the past few months to keep up with my blog. I do want everyone to know what is happening though. I was horseback riding 45 minutes away, which was great until gas became such an issue and a few people at the property became bent nosed about one issue or another and I had to be the better person and leave. It's too bad that people have to be so juvenile and hold grudges. On top of that, It's unfair for someone like me who tries so hard to do 110% to be treated like all I'm doing is out to be in the way. I do hope in the near future I can take my experience and find a place where I am appreciated, and can ride to exercise a horse that is getting as little exercise as myself and just needs a companion. The experience of trying to run an entire estate sale, which was very successful until the last day, was too stressful on my body. I was not yet ready to be under that sort of stress. A week after the sale ended, a 5 week process, I developed a blood clot or deep vein thrombosis around my PICC line and had to have it pulled after 15 months. Nearly all my medicine stopped for 13 days until I returned to my LLMD, and the clot was watched very closely. I have recovered for the most part but am still struggling with worsened symptoms including return of brain fog, muscle twitching, fatigue, mood swings, pain, and nausea. Just the other day I started back at square one. I am now on oral Clindamycin, Rifampin, and Minocycline. I may have begun experiencing the migraines from the Minocin again today but I need to wait a few days to see for sure. The Clindamycin is substituting the PICC medication, and we are hoping for as good of a response. In two weeks, after taking these medicines, letting my body adjust, and detoxing, I will start Serrapeptase and Nattokinase to help break up bio films and make the antibiotics more effective, break up blood clots, and also break up cysts while reducing inflammation. I hope these medicines are as problem solving as they sound, and will have to wait to see for sure. Most people who are not sensitive to antibiotics or can't take high amounts due to stomach sensitivities would benefit from these two, as they are taken 30 minutes before antibiotics and are helpful in increasing the effectiveness of herbal or prescription treatments.

On the school front, I have set a challenging but realistic goal I believe to have my High School Diploma at the end of summer, do transfer credits and CLEP courses in the fall, and attend a local college in January of 2014. Determination is all that's getting me through right now. I am finishing a Physical Education class online right now, and taking a midterm for a Chemistry course that should get me through the test for the college credit. I will be taking a transferable English credit for one of my two required English credits left, and same with Health. I should start an SAT Prep course in December, and take my SAT's in May and maybe even in the fall again. Crossing my fingers for a clear enough brain to get me through another year of school online! The tutor is a huge help, without that help I would have dropped out of Chemistry online, and I am looking forward to more time with her until December or beyond.

Wednesday, August 22, 2012


I was directed to this web page by a friend whom I have discussed many detoxing ideas with in the past. Almost all of these I have tried, a lot of them I still do. Do what works for you, and remember that most people agree with the fact that detoxing is as important if not more important than the treatment of ANY medical setback!

Tuesday, August 14, 2012

Rare Hyperhidrosis Sweating on Back of One Hand

Last week I finally saw a dermatologist who could help me. After 10 years or more suffering with pouring sweat from the back of my left hand, and googling the problem endlessly, I finally discovered the condition of excessive sweating was called Hyperhidrosis. When I was younger I saw a dermatologist that informed me he had never seen this, did not know what it was, thought I should tough it out, and sent me home with a prescription for Dry sol that burnt my hand and severely irritated my hand, not fixing the problem. Through my searches online I found two dermatologists, one through well renowned Dartmouth Hitchcock who has a branch in Manchester, NH, and one farther away who was willing to see me sooner. I scheduled both appointments and the first one was terrible. Dr. Campbell at Dover Skin Health did not spend more than five minutes with me, ignored my story, said less than ten words, and sent me home with a prescription for the same stuff that hadn't worked for me beforehand! It was a disaster, waste of a drive! After a three month wait I saw Dr. Willer through Dartmouth, and he was superb. He saw me 45 minutes late since my Lyme brain got me terribly lost, and spent at least another 45 minutes with me. He listened to my story, showed a diagram of the body's nerve pathways, described my condition and the concerns with certain treatments and their complications right now, and he even assured me we would figure it out once the Lyme clears up. There was nothing negative said about the diagnosis of Lyme Disease, and all was smooth. Dr. Willer had never seen a patient with this sever of a condition on the back of a hand, nor on the back of one hand. Usually patients suffer sweating on both sides of the body equally. So I guess I am one percent, and unable to receive surgery since the place of problem is nearly impossible to find. He suggested we get a neurological work up since usually problems on one side of the body are caused from a problem including a tumor in the brain or on the nerve somewhere. A tumor is unlikely after 10 years of dealing with this however, but still we should look into it. So when I see my new PCP for the first time I plan to discuss this with her.

Sunday, August 12, 2012

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.

My Busy Week Before I Started Schoolwork

The week before I started schoolwork I worked a temporary position at Gunstock and got to attend the Soulfest for the four days I was there. Soulfest is a four day christian concert with over 100 artists and 5 separate stages. 10,000 people were there on the Saturday and that evening I got to see Casting Crowns. I saw Switchfoot, TobyMac, Casting Crowns, Lecrae, Fireflight, Family Force 5, Kutless, Rachel Taylor, Phil Joel and Peter Furler, Paul Colman, and so many more in the four evenings I was there. During the day I worked 8 hours with the adventure center doing zip line harnesses and directing people, answering questions, guiding the guests, etc. It was a worthwhile week. The third day I even got to go zip lining when it quieted down. That was the best experience I've had yet. It was amazing! Flying down through the trees at 59 mph and riding five different spans of line in the sun with an amazing view of Lake Winnepesaukee. I had a blast! I just wish it didn't take so much energy for me to participate in all the activity. I was pretty beat afterwards and spent all Sunday sick as a dog hanging over a bucket. Then Monday my tutoring was starting so I had to keep pushing through like I do best.

Wednesday, August 8, 2012


Just wanted to share a post on how an unhealthy person can be a powerhouse when allowed even an inch of freedom from an illness. I completed nearly 6 weeks of schoolwork with an A at the end of the day in just 2 days! How AMAZING is that? Biology has been a course hanging over my head for an entire year of foggy brain days. I finally am beating it! I am winning this one, and I start a Physical Education course on Friday which should get me through another mandatory credit! My tutor is finally coming to keep me on track and we did a lab today and extracted DNA from peas and spinach. Such fun! Then I got to make a brochure on Babesia as a parasite which made me happy. I may have discovered the cause of my increasingly worsening symptoms over the past few weeks. My doctor's nurse called today (the LLMD) and took me off of all my antibiotics that I take orally because my liver test I do weekly to keep him up to date on it's function was extremely abnormal and concerning. We are going to retest in a week and possibly do another ultrasound on the liver if this medicine break doesn't fix the problem. It is a little concerning that I am having liver problems yet proceeding with life full force. My last horse show of this season is in two days, so I have to push through at least for that. Tomorrow I see another dermatologist to discuss the Hyperhidrosis on the back of my left hand and see what he might could do about it. Then I have a long day clipping my horse (shaving and cleaning) for the upcoming show and there will be no time to rest until the evening.

Wednesday, July 25, 2012

How to Get Back to School

This has been a question I've asked myself for so long, the infamous school challenge. For teenagers with chronic illnesses, school is a daunting chore we must all face at some point. However, it doesn't have to be the end of the world. It has taken me a long time to come to grips with this. My entire childhood encompassed the school career. I struggled to receive straight A's, be number one, form lasting bonds with teachers and student aids, keep involved in sports and after school activities like student council, still find time to read and have friendships, and so much more. The ideal picture was the possibility of graduating early, or with more than enough credits, and progressing to a large career field where I could be top of my class and shine like the star I am down inside. When I got sick in seventh grade it killed me to miss school, to miss my first year being secretary of Student Council, miss the application process of National Junior Honor Society, miss the soccer games, and band practices, and lose so many 'friendships'. My heart broke everyday, and it still breaks as I face the challenge of jumping back into school. I have been unable to process, react, concentrate, and remember like the student I once was for an entire 15 months. My brain just doesn't cooperate with me anymore, however I have to keep one foot in the door and attempt my dream to a high school diploma. I never expected that one day my biggest dreams of 8 years of college would be obliterated and all I would pray for was to graduate. Just to make it through. Call me preppy, but taking an extra year to finish school, being left behind by the class I have grown with since kindergarten, and struggling to just keep a B is very painful. There are options out there however. I am receiving help from Partners in Health to refine a legal 504 encompassing my entire health condition, request IEP special education testing, meet with the school and demand a tutor to help me review and finish one class at a time, and re enlisting to my classes through an online charter school called Virtual Learning Academy (VLACS). If I don't have to be in those halls, judged by those teenagers and confused teachers, than I would prefer not to be. I have done well with a few VLACS courses in the past, and I am pushing to receive a tutor and get through my junior year. There is also the option of completing credits at a local high school that offers a night school program and runs it very much like a college class for adults pursuing high school diplomas or students wishing to graduate early. This is an option, but not a great one as they will not accommodate my medical needs fully. At this point I am thinking I need to finish my biology from Sophomore year by this fall, with a tutor's help. Then I will proceed with receiving help to pick up another 2 or 3 classes online, working out of the house still and trying my best to complete them thoroughly and quickly. If I can manage this, holding myself to a daily schedule, then I will consider either returning to school in the spring part time or picking up a few of those night classes along with the VLACS. Its a step by step process to feel out my success in the near future with this new neurological setback from the combined Chronic Lyme, and post concussion symptoms.

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.

Friday, July 6, 2012

Half Brother for Christmas

On Christmas Eve my parents received a call at one in the morning. Apparently, when my dad was younger and in the air force, stationed in Georgia, right before he met my mother he was engaged to a woman named Sandy. They were living together and his parents came down all the way from New Hampshire to meet the fiance, when she mysteriously broke it off. Within a few months, Sandy discovered she was pregnant and for reasons unknown she decided not to tell anyone including Jake, the little boy she gave birth to 21 years ago. For the first time, Jake has connected with my father and told him he had another son, and was married to a woman named Shari and had a baby who was 2 years old named Chance. The following week they received the paternity test results, 99.9% positive. Jake, Shari, and Chance came to visit us from the 27th until today, the 6th. It has been a long six months preparing for this week where I met my oldest brother for the first time, my first sister in law, and my nephew! What a Christmas present to receive! My brother Jake got to say happy fathers day for the first time to my dad last month, and we has a great week getting to know them. We went to the beach and had family gatherings for July 4th and ate seafood. Sorry for not posting sooner on this event, but it's kept me busy and I have not had much time the past two weeks to post. I am so glad I was feeling better to enjoy their company this week. They are on their way back to Iowa right now, where they have a house and the rest of their family. It will be a long drive but we hope to see them again soon. My life seems to be like a Jerry Springer episode, always something shocking and dramatic to keep us busy!

Minocin, Omnicef, Plaquenil, and Clindamycin

My lyme doctor has yet again switched up my protocol a bit. This time it's purpose is to get me back on some medicine that will combat the Bartonella in all it's forms. Minocin is a doxycycline type medicine that is used to treat lyme and is one of the first medications used in most peoples treatment. I have never been on doxy, but this is my 3rd time on Minocycline known as minocin. We just started the Minocin and Plaquenil two days ago and I have been on the Omnicef and IV Clindamycin for atleast  a few months. This is my thirteenth month on IV Medication, technically twelfth month since I took April off. Only two have been on Clindamycin and they have been the best two months yet. I am on my third month now and feeling pretty good. Coming off of the Yaz/Gianvi has straightened out a lot of depression symptoms, and coming off of Elavil/Amitriptyline helped my heart rate and dizzy spells. I am on an adrenal support supplement, powder magnesium, Co-Q 10 and sub-lingual b-12 to help with energy and detoxing. The grand scheme of things is hard on my stomach, but you can get a lot of this stuff that is drinkable and dissolves in your mouth to lighten the load on the gut, and increase the efficiency of the supplements. I am more energetic, cleaning around the house and getting out more. If my memory was not still blocked I would even be clear enough to start catching up on schoolwork and finishing my Biology and Spanish from Sophomore year. I am going to start a Physical Education class online to start doing something to get me back on track, and now that my visiting family has left and things have calmed down (see 'Half Brother for Christmas'), I can concentrate more on getting myself back into life. I still need to rest and take it easy, but I have even gone as far as starting to run every other day!

Wednesday, June 20, 2012

Post Surgery Check Up, Non Lyme Friendly PCP

Yesterday I went for my post surgery check ups. First up to bat was my PCP. Believe me, I wish I had a bat. She was bent nosed about the fact that I was feeling better from the gall bladder removal. She was the one who thought it was indigestion, I told her it was worse than that, hmm. The patient is ALWAYS right. The first thing she said upon entering the room was 'So, you're all better now?' with more sarcasm than I could believe. So I responded with how my stomach was feeling a lot better, virtually no pain. Told her that I came off of the Yaz because it was causing severe suicidal type depression and anxiety and not helping the cramps or acne or cyst pain. Instead I just bled every two weeks. She didn't have any comment about that. Then I told her about my heart rate averaging about 120 and 100 at rest. Informed her that I started adrenal supplement to help with tachycardia symptoms and fatigue. She responded with 'So you're just adding another medicine then?'

With all the patience in the world I tried to ignore the comments and sarcasm, in her tone of voice, and asked if she knew anything further about disability. Our meeting ended with her replying that she knew nothing about disability or the prerequisites for applying and she didn't think I needed disability, and instead I need to just 'get up and do schoolwork' because that will make it all better. Supposedly I don't need to drive or be on car insurance either, because it's not anything of concern to her that I wouldn't make it to half my appointments without my license. General consensus, she does NOT understand, wants nothing to do with the Lyme, does not believe I need disability, and treats me like a psychopath when my mother is not at the appointment.

My appointment with the surgeon went great though! Tajammul Shafique is by far the best doctor I have ever seen in my entire life. The nurse got me flowers and they all talked to me like they were my best friends! Dr. Shafique agreed that the surgery appears to have been a success and I don't need to return for any more appointments. For anyone that needs a surgeon: Dr. Shafique through LRGH in Laconia, NH or Gilford, NH Is the way to go! He revived the medical field in my eyes after a rough morning with a non friendly doctor.

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.

Tuesday, June 12, 2012

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. (

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!

Wednesday, June 6, 2012

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.

Monday, June 4, 2012


This is such a blessing. My first car as a teenager after shopping patiently for two years, and taking 8 months to complete drivers ed and get my license. We shopped all day long on Memorial day, trying to find good deals and looking in trailer parks on the side of roads, etc. for the perfect car. We wanted something with automatic transmission, high gas mileage, great safety ratings, lots of space inside for skis and family, and under our price range. We left the house with our savings of $3000 looking for something for $2000 so we would have enough money to put work into the vehicle. We were in no rush, setting our hearts on open and looking at places all over the lakes region and down to Concord and back. After giving up from an eventful day, we saw a vehicle across from a stop sign on the way home and my mom recognized the for sale sign in the drivers window. We pulled up to a silver, 2005 Dodge Stratus with less than 104,000 miles on it and a price tag of $2,200. The next day we took the car to the mechanic and discovered it needed over $700 of work. The woman offered the car to us for $1,600. What a great deal. The car books for $5,500 and after doing the brake work and getting used summer tires for it we will own it for probably under $2,500. What a great first car. It's sporty looking, in clean shape, with a 2.7L V6 engine to assure safety and multiple airbags. I am so excited, after the car is registered and installed I hope to be able to drive it, but I'm also waiting to recover from surgery too. It should be fairly good on gas, getting around 26 or 28 mpg. Here's some pics!

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!

Tuesday, May 29, 2012

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.

Wednesday, May 23, 2012

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.

Tuesday, May 22, 2012


'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.

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.

Saturday, May 19, 2012

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:

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!

Friday, May 18, 2012

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.

20/20 Preview for Tonight

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:

ABC News, 10 pm EST

Thursday, May 17, 2012

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:

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:

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! Features Article for 20/20 on Friday, 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!

Tuesday, May 15, 2012

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.

Monday, May 14, 2012

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.

Sunday, May 13, 2012

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.

Friday, May 11, 2012

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'.

Thursday, April 12, 2012

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.

Tuesday, March 13, 2012

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.

Saturday, February 25, 2012

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.

Friday, February 24, 2012

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.

Thursday, February 23, 2012

Day 7

It's the final day of the seven day challenge. Today has shown me that seven days just isn't enough to get inside anyone's head. I have found that blogging everyday is challenging yet rewarding. Its therapeutic almost like journalism. I need to be using this website to not only keep my family and friends up to date on my recovery, but to show other people with chronic illnesses or handicaps that I will get better and it's okay to have bad days. We all learn lessons from mistakes and problems we encounter in our lives. If I can share my lessons with others, maybe they won't take the three strike rule to realize they need to listen. One lesson I realized today was I have no ability to pace myself. I push way too hard, and I don't know how to say no. When I think I feel better, I say yes to everything, fill up my schedule, and forget that I should take at least six months of symptom free days before I take on more than two activities. Then, just like before, I am declining health wise and stuck in a snowball effect of promises and responsibilities that I can't maintain. It's more efficient time wise to make a limit. Two activities is a safe bet, because you can pick a mandatory one that will effect your future, and a fun one that will give you purpose and enjoyment in life. For example, school work and a sport, or work and volunteering. Life is all about balance, and Lyme patients have to have even more balance than they believe they need. Balancing diet, physical activity, stressors, responsibility, and relaxation is mandatory. I am in the process of redesigning my life so I can take a step back and balance everything again. Today I couldn't even attend Civil Air Patrol because I woke up this morning on my one day of the week off from work and couldn't move from bed. My mom brought my a small lunch and my IV Nurse changed my dressing in bed. When I moved at 3:30 pm I was so dizzy and nauseas from napping that I cancelled the nights plans, and went right back to bed. Sometimes I just wish I had someone to sit with me and pet my head, or listen to me complain when I'm miserable. Not give me advice or motherly comfort, but that's okay sometimes too. The point is that there is a time for both, just like there is a time to be proactive and there is a time to be reactive. I have made choices that I now have to be reactive to, but next time I will be proactive and control my choices. If I could give major advice to any sufferer of any road block anywhere, it wouldn't be to keep your chin up, because sometimes the sun will get in your eyes, it would be to be proactive, and put on those sunglasses before you put your chin up so the sun will not affect you as much.

Wednesday, February 22, 2012

Day 6

I've persevered for my few followers on to day 6 of my 7 day blog challenge. Today has been a weird day. I haven't been in bad spirits, but I have been distant with thoughts and pressures of what is going to occur in my future. I had a visit from my home visiting nurse this morning. She comes once a week, takes my vitals, checks my IV for problems or infections, changes the dressing around the PICC line, draws my blood, and notes any changes in medicine or how I'm feeling. She can't come any less than once a week so I will see her again tomorrow since we are switching my day to Thursdays, my day off. She had a student with her today so she was running a bit late, which meant we had 10 minutes to zoom through a dressing change so I could rush off to a mediocre day at work. I worked from 10-5, pushed through two rushes and smiled at everybody as nonchalantly as I could. At the end of the day I was ready to go home, because there was family drama I wanted to be home for. I made it in before 5:30 pm, which felt great! That gave me enough time to suffer an hour of showering duties, and think about how I didn't have the energy to do the laundry or dishes that needed to be done, and how I didn't have much of a gluten free selection for dinner. My mom took off to go grocery shopping with my dad so I caught up on two episodes of the TV show 'Castle' about a detective and a writer in NYC. Its a good show, takes me to the fantasy of a world where the main characters are completely healthy, carrying out high energy jobs without a problem and thinking through major screenplays that my brain can barely comprehend as the viewer, forget the writer! It's been a long day with fairly warm weather and a lot of thought. I'm sure my brain will be relieved to turn off for a few hours as I sleep. Finally got Melatonin so I should sleep well tonight for the first time in a week! Off I go!

Tuesday, February 21, 2012

Day 5

I'm over the half way mark of this seven day challenge and I'm quite convinced that it has almost been healthy for me, like a public journal, and maybe I'll be blogging way more often after this week is done. Today, in the grand scheme of things, has been a very good day. I woke up early to witness my PCP or personal care physician overreact about my fingers that turned out to be not broken, just slightly sprained. Then I received a call that I was written on the work schedule for 10-6 when I was told 2-8. So I rushed around with my new shiny finger splints and flew off to work. The socialization I get working at Gunstock is refreshing. Hundreds of people come and go, and many regulars return to see my smiling face and sometimes even tip me a dollar or two! It surprises me how many people coming and going look familiar to me, but my brain just blocks out the information I need to remember their name or where I remember them from. I still smile and wave and hope for a release of memories to save me from embarrassment.

Today I realized there is a lot of pressure on me. I knew this all along, the past couple weeks with my life flowing like an icy river, to the hours in the day that change like the wind. Gunstock doesn't have winter forever, and soon I will be jobless. I'll have to get a summer job to pay for insurance and save money for a vehicle for myself and maybe even emergency savings. I need to catch up on school, maybe reduce the amount of current shifts I'm taking so I can survive health-wise. There are too many things on my mind that are stressing me, and I would never be able to remember all of them at once, but there's more to my life than meets the eyes.

Monday, February 20, 2012

Day 4

Four is not my lucky number I guess. Today has been a terrible day. My fingers are taped to Popsicle sticks, and  work was painfully busy. I was in so much pain all day that it wore me down to the bone. I couldn't fight off the cold temperature when I stepped outside to walk to my car, and I just wanted to sleep the entire drive home. I'm suffering such a bad spout of depression right now. I don't feel this way all the time, and sometimes I want to cry but can just keep working through it, like when I working ski check and have something else to think about or when I'm at CAP and vulnerability is not an option. I can't be an emotional mess in this world. I have things to get done. But right now I'm officially the dictionary definition of mess. It's so hard to sit here with tears streaming down my face and think of how I'm supposed to describe what I feel like right now, what's going through my mind right now. I really don't think I can, or that I should have to. I'm highly discouraged, and my body has run out of available energy to draw from for optimism. We all reach this point, now it's my time to fight through it and overcome it with the amazing friends I have.

Sunday, February 19, 2012

Day 3

I'm so tired my eyes are burning and my head is aching all over. But before I go to bed after a long day I must do a small day 3 post to continue on my 7 day challenge! This week is Massachusetts school vacation week so Gunstock will be bustling with vacationers getting in their skiing and snowboarding time. I work 5 days this week, and hope I'll get some time to breath in between the rush. I have schoolwork to do but no brain power to get going with, and I have fallen back on the job of taking care of myself. I realized tonight that I am out of pro-biotics which usually causes yeast problems, Melatonin which helps me sleep, and b-12 for energy. I really need to find time to stop at the health food store! I tried a new church this morning, and got to visit my miniature horse. While I was in the paddock getting Miracle, another horse started kicking and caught my hand in a few good whacks. My middle finger and ring finger on my left hand are all torn up and I believe sprained. The fun never ends for me! Now I have to suck it up and go lift baskets and bags all day tomorrow. Mike was with me for the day too. I feel like outer support systems do try to understand, but us chronically ill people give them a harder time then we think. I wish I could go back to the gentle soul I was before Lyme where I had no worries and just smiles and optimism. Maybe I'll feel that again some day in the future!

Saturday, February 18, 2012

Day 2

Today was a busy out straight day. Like most of my days, I didn't have time to take my medicine, pack a gluten free lunch and dinner, get sleep and still eat a healthy breakfast, or even take a couple minutes to close my eyes and think. I drove my parents around Laconia, running a few errands and attending half of the Lyme 411 Support Group meeting. At the meeting I met a fellow young girl with Lyme and smell sensibilities. I did not realize how sensitive people can be to scents like perfumes and cleaning solutions. It's another invisible symptom of Lyme Disease that many don't care to recognize. I rushed my parents back home and sped to work, not even enough time to fill my water bottle so I'd stay hydrated. I arrived late, and still all the handicap parking was full so I had to forget the placard that I still have until the end of this month and park a mile out, practically running to clock in. Then I made my way to the basket room where I work half the time and told myself I wasn't hungry. After all I was late, there was a line, and I didn't have time to eat even if I went to get the food. So I jumped right in, answering phone calls, collecting bags, logging lost items, and completely spacing the fact that I forgot my sneakers in the car. After two hours I was hungry and thirsty, beginning the stages of being dizzy and lightheaded. Four hours in my entire back and down my legs hurt from the decorative boots I was wearing and my head screamed at me to just sit down. Five hours in I splurged on a cheeseburger and some chocolate pudding, shutting my head up and killing my stomach at the same time. I left work after six hours of strategically catching as much sitting time as I could and ignoring the elbow and knee pain. A member of security drove me to the back parking lot to retrieve my car and I made my way home. I just finished off that pudding and it was very good, though I know tomorrow I will wake up with the same familiar headache and lots of abdominal pain. I'll probably toss and turn tonight and need to drink a glass of magnesium tomorrow just to make it through the next 24 hours, but I'll survive. I just can't wait to put on some comfy clothes, and set my alarm for 8 am. I can't believe I still have to brave the shower either tonight or tomorrow. Its a regular activity for many but its an hour and a half of wrapping my arm in plastic wrap and medical tape and getting help to scrub my hair since I can't bend my elbows or get my Picc line(IV) wet. I end up getting out of the steamy heat and feeling like collapsing because of the nausea and fatigue it creates. Lyme doesn't like heat, and it makes you feel like a vegetable when you spend too much time in it. Thankfully my mother is there to help me and I'll get out alive no matter how questionable I feel half way through the process. The hardest part now is to figure out whether to take it after such a long day when all I want to do is sleep or beginning tomorrow which might drain my day's energy. I've gotten up to take showers in the middle of the night because of this reason, then I get a little rest and I still get more before the next day. For tonight I'm just going to get ready for bed and embrace the opportunity for that free clean feeling tomorrow. Goodnight world.