Another Month

Overdone, tired, shaken, and stirred, my body has made it another month. I've pushed through to do certain activities, still in the wheelchair with no leg strength, and have just increasingly worsened. Last weekend was the Lyme Conference for our support group, the only in our area, and many doctors and sick and even healthy people came to help and learn together. I made buttons for the support group, rounding up a few helpless souls, whom all regretted the process, to assist me with the tedious task. It was back breaking work, and really wore me out. Even our goal of 500 was not met, we skimmed by to 300 buttons. The conference had a long day, and by the end, I was hauled out of their shaking really bad. Pushing it yet again so hard was what threw me over the edge again. That night I started autism like symptoms, so bad I can barely type this update. My mouth is non stop, and my brain is off the walls. I cant concentrate, and I have a crazy way of communicating now. My voice is weird, almost like an accent, and I am repeating everything multiple times. I would like to go see Dr. Jones like I've been told I should so many times, but his office is full. However he recommended we see a Dr. in Vermont who would consult with him and maybe take my insurance. I already met the Dr. at the conference and listened to him talk. He saw me in the wheelchair, shaking at the end, and insisted he'd be able to rush us in this week. Today I saw the neurologist, a brain Dr. who was not Lyme friendly, and he suggested this is serious and to hospitalize me at a children's center at either Boston or Dartmouth. He's worried that he can't assist me. However, those two hospitals are not very open to the Disease in it's Chronic form so it would be a battle. Right now we are trying magnetic therapy and other physical and occupational therapies to help out, and my mom is making me an appointment with the recommended Lyme Specialist. We shall see what he thinks for treatment.

High School Assembly

The assembly went really well. It started with the small disappointment that the vice principal went against what we decided and had specific teachers 'sign up' which probably caused confusion and only half the school came down for the assembly. Thats what happens when you aren't there 24/7. They change everything without permission. But aside from that, it was well attended. About 200 Students, over 10 or 15 teachers, and some other staff. I had Dave Hunter from Manchester support group and Nancy Bourrassa from Lyme411 and Lakes Region Support Group there to speak with me, and my new friend Kaity who also has Lyme and lives in the town over, was there. All the students were rowdy so I introduced myself and the assembly,  and told them all to keep quiet. Then Nancy took over talking about the Support Group events like the Timberman Triathlon that we participate in,soon passing it off to Dave. He talked really well about the whole scheme of Lyme. Everyone seemed fairly attentive. We ended with a bang, because I went to the mic. and explained my story. "I was called crazy, a hypochondriac, a liar, that I was mimicking my mother's headaches, by Doctors I trusted and friends I loved." I said. "This is a serious blind illness, and I may stand here today and look normal, but there is a war going on in my body and I will regret this assembly for a week."
Not a soul was moving or breathing, the place was silent, all eyes on me, all shocked gazes baring down on me. I did well, I made my point, I opened there eyes. They all started to move and leave after I said Thank You but many said "I never realized." One teacher asked for a copy of the Lyme Documentary Under Our Skin. Another suggested I privately present to more schools and the health classes more in depth. It was a home run.

Relapse, New Symptoms

So Prom led to overdoing it. My body was overstressed and pushed to far. The Lyme and Bartonella began to attack my brain, leading to convulsions that looked like shivering. I was scared because I couldn't get the shaking in my whole body to stop and my breaths came in choppy. Sunday AM for 3 hours we fought the shakes until Valerian root calmed me enough to sleep. Later, when I woke up, they started again but I took more Valerian root and went fishing with my family. That was a mistake, because the lack of rest led to worse shakes that evening. I took Valerian Root and my mom took a video which I will share the link to, but it took awhile to slow down and I even fought for breath, stopping breathing once and turning slightly purple. I was terrified. This was a bad relapse. Terrible. Maybe herx reaction? No probably just toxic overload in my brain. I barely walked into the house Sunday evening and made my way to bed. Monday morning was an early rise and we were on the Lyme Doctor's doorstep. I was shaking terribly and stopped breathing 4 times, once in front of him. It was a very scary morning, he gave me a valium which worked amazingly and sent me home with a change of antibiotics, from minocin to zithromax, and something to make amoxy stronger, and a relaxing meds which didn't work well and had to be switched to Ativan a day later which worked better and could be taken with Valerian. Now the head shaking is slight, but still there. The worse part is I can move my legs with much effort, but I cannot stand or walk because of the weight on them. They start to cross and turn to Jello and I can't walk. I have ended up on the floor twice, because I thought maybe I could crawl once, and the other time I just forgot. Now I'm just in the slow transition into wheelchair bound. Its scary and sad but Im keeping my head up. For awhile tears kept falling, I cant see my mini horse, I cant really do anything, I still have to push through drivers education classes. Its alot to deal with!

http://www.youtube.com/watch?v=64dB7nD49kQ

Prom!

I've waited for Prom all my life, It was something where dressing up was acceptable, pushing formal over the edge was preferred, and everyone looked equally beautiful. I had never been to a prom but this year was a dream! I was invited to another school's prom by my boyfriend, a 6'2" Senior football player and track star from a few towns over. I love him, because he looks into my eyes and knows how bad I'm hurting but how much I'm pushing through. We had been planning prom for a few months, and now it was here. After the big High School Assembly I ran I got home and started preparing. I soaked my feet in Epsom salt and did my toenails though I started to feel really sick. Then I showered and dried my hair for the next morning and went to bed anxious.

I got up early, got my hair done for two hours and my makeup. I knew I felt terrible, but I must keep swimming. We stopped by the Lyme walk to take some quick pics and then moved onto heading home because the rain was picking up. The rain was a sad thing. I wanted beautiful pictures! I started praying hard, trying not to cry. I just wanted a perfect prom day! By the time I got sewn into my dress and was already and heading to the photo op the sun peaked out of the clouds and we had gorgeous picture weather. 45 minutes with Tyler's brother and my mother taking many different gorgeous pictures of us. Then off to prom which was a great evening. Afterwards was an after prom party that I had planned to attend, so i changed from my dress, feeling increasingly worse. When we got to the movie theater where the Chemical free prom party was being held, I had to call my mom because I was ready to blow. I was so nauseas and began to shiver. When I got in the car the shivers turned, and started a whole different set of issues. Prom was well worth it though.

High School Assembly

I recently arranged a huge assembly at my High School. Today was the day that I brought in two guest speakers and my best lyme buddie and little brother and we tried to keep the attention span of 200 teenagers. We opened a lot of eyes. Close to the end I got time to do a mini rant and tell my story, expressing how invisible the disease is and the things I've been told by doctors. So many eyes are opened, it was wonderful. I'm so proud of myself for standing up and sharing such personal and painful information with my peers, and really getting the chance to tell them how it is. I have at least 15 other presentations to do at the middle school. That should be loads of fun, and then a few more presentations at the high school health classes and we should be all set. This month is a busy one, but the fact that I'm starting a book and public speaking makes me feel like I'm making a difference.

Candida Overgrowth, Intestinal Yeast

Over the past few weeks I've suffered with severe stomach pain. The emergency room proved uneventful and we just found some small ovarian cysts but nothing to really explain my pain in full. Through talking with a friend and research I started looking into intestinal yeast overgrowth or infection. Its more likely to occur from too much good bacteria dying off due to antibiotics or birth control. I've been on antibiotics for 2 1/2 years and always have stomach issues. Candida can cause stomach pain, indigestion, nausea, acid reflux, headaches, fatigue, dandruff, thrush of the tongue, sore throats and nasal swelling, sleep issues, and ovarian cysts or dysfunctions. Wow, doesn't that cover a lot. :P I thought this made sense, so I looked into it further and my mother and I found a spit test that you do first thing in the AM, which was a great signifier for me, and even a symptoms point based test where I blew positive out of the park. Treatment is lots of magnesium calcium, which i tripled my herbal amounts and added garlic, and started magnesium drinks, also high amounts of pro biotics like yogurt, refrigerated pro biotic drinks, pills before bed, and on top of everything a diet restricting the amount of yeast and sugars, even natural fruity sugars, from diet. The diet is tough, no dairy, light amounts of nuts, reduced yeast, and very small amounts of fruit. Allowed: meat, and vegetables like salad and beans, small amounts of nuts, olive oil, and malto dextrins that are in sugar free flavorings. Whew, this is going to be a fun next few months trying to get my body back on track. google this if you think you may have a Candida issue, its dangerous and quite important to discover for yourself.

The Best Site

This is by far the best informational website I have found. I am immediately mailing it out to everyone I can think of, and all the science teachers in the school! :)

http://autoimmunityresearch.org/lyme-disease/

Check it out!