Friday, October 12, 2012

A Day in Life of Me

A guest post by my daughter.

This is me when I got my new iPad!
I am ten. I love to write, bake, and sing. I have a one year old scaly spiky friend. Her name is Rubye. She is a bearded dragon. Now you may think I spelled her name wrong, but I didn't. You see, Ruby is a common name, but I thought that since that was a common name I would make it an uncommon spelling. I love Rubye because she is really curious and fun to play with.

Marley is a great dog, too! He always knows when something is wrong and sometimes when Mom tries to hug me, he jumps between us and lies on me and pushes Mom away. It's really funny and it always makes us laugh! He always finds me when I am sad or hurting. He gives me a Marley hug and curls up with me. He always makes me feel better. He also likes it when I read him stories, especially ones where the character's name is Marley and he is a dog. Rubye likes stories, too! I am so glad I have a pet patrol in my room!

Lately, I have been feeling pretty icky. Sometimes I have to stay home from school for part of the day because I am hurting. Sometimes I am so tired, I can't wake up. When I do, I feel worse than in my dreams. We are planning to make a chart of my body so I can circle where I am hurting. Today, even my teeth hurt. I have been wearing my neck brace because it is helping me not hurt as much. I have a shunt and have had surgery on my brain. I have two syrinxes in my spinal cord that make my body hurt or feel funny. Sometimes I have a sharp pain that feels like lightening in my back. It is pretty scary. Some days I wish I could meet another kid like me.

My big sister is having some big problems, too. Sometimes I wish I could have a way to go back in time. I would tell the doctors that we had Lyme disease from the start and maybe they could have found a cure for us sooner.

Lyme is not stopping me from doing what I love to do most. Yesterday I started to write a book. A lot of the kids in my class want a copy when I'm done. It makes me feel good that people appreciate what I'm trying to do and also I can't wait until we bake cupcakes or when a birthday comes up. Finally, I have a couple groups I love to sing for and I love to be in plays. My music teacher is the director of some of my plays. We have a lot of fun! I love my friends!  I love it when my cousins are in my plays too!

I love my new iPad because I put a bunch of learning apps on it and it is helping me with learning. Even though I may have problems I don't let them stop me.



2 comments:

  1. I am in need of information about Lymes...and it appears you have a long history with it.
    3/2011 I went to my GP with extreme fatigue, was diagnosed with hypo-thyroid, treated and told I was "fine" with no relief from my fatigue (I'm sure you've been there done that)so I sought help from a Naturopath with some improvement from my fatigue (with help from B-12!)My initial labs showed Chronic Epstien-Barr, adrenal fatigue, severe anemia, deficiencies in B-12, D3 and folate. Fastforward 18 mos on a hunch she tested for Lymes, I am positive. I have been digesting this for a couple weeks now. Historically I have been EXTREMELY healthy not getting even a cold for years on end, things I do get are "odd" like Fifth's Disease (full blown head to toe hives, fever etc)at 38...or the FULL BLOWN FLU when recieving my first flu vaccine at 46 (never had it before, EVER)arthritis in my big toe joints at 27, and in my knees at 38...both joints totally destroyed before I was diagnosed.The first thing that occurs to me is that at 18 I worked for 8 mos for the Forest Service in the Rocky Mountains. During that summer I was diagnosed with Rocky Mountain Spotted Fever...very similar symptoms to Lymes. Since then I have NEVER (that I am aware of) had a tick, rash etc..and having worked outdoors I am VERY aware. Is it possible that I have had Lymes for 28-29 years and remained fairly healthy? (except for the arthritis!)My NP has prescribed Colliodial Silver 2 teas. 2x daily, 21 days Doxycyline, 10 days Amoxicillian, 5 days Metroniazole...I am in the initial 21 days and have had burning sensations on my skin, muscle pain (worse than usual)neck and shoulder muscle spasms. Any advice, resources, or info you could share would be greatly appreciated!

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  2. Wow! Our stories are pretty similar!! I'm not a physician so all I share is just from my own personal experience. in my case, the burning sensation was a phototoxic reaction to the sun. Very common with doxy and not dangerous, but it can be pretty miserable. My recommendation would be sun protection from clothing and high SPF sunscreen, a hat, and at it's worst, I wore gloves outside because the top of my hands were exposed.

    With the chronic EBV and the fatigue you are describing, I suspect you also have CFS. My physician has done a tremendous amount of research with CFS and CFS with Lyme. A definitive test for CFS is T-wave flattening. You find it after wearing a Holter monitor for 24 hours. He's also found that there is at least one and often more of the following viruses: CMV, EBV, HV-6. I am on an antiviral medication as well as the antibiotics.

    Your story intrigues me as I also had chronic Fifth's disease, caused by HPV, another virus. I'm also intrigued by the Rocky Mountain Spotted Fever as I have wondered about exposure to that myself in 1983. At the time, the college health center quarantined me to my room with a mysterious tiny speckled rash over my entire body. I also had a fever and general malaise. I do think I was also exposed to Lyme, but have wondered if this has complicated my case?

    You asked me if you could have had this for that long with relatively good health, except for the arthritis and I would lean toward yes, it's a possibility. In my situation I dealt with a lot of the little things, but symptoms increased with stress putting me over the tipping point. I often hear this from people. They were doing ok until a very stressful event compromised the immune system. My case became even more complex with a misdiagnosis of Lupus and a treatment of strong immunosuppressants. It still hasn't recovered fully.

    As for a tick bite, peer-reviewed studies show it can also be transmitted by biting flies which raises a whole new venue of exposure. Also you only get a bull's eye about 40% of the time. Nymphs are so tiny, they're easy to miss. If you spend significant amount of time outside there is certainly risk of exposure.

    As for resources, I have found http://canlyme.org a great resource. The Tick Borne Disease Alliance is also a great. Your state may have an organization at the state level.

    Wishing you well as you begin this new path of treatment!

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