I was at your Web site and found that you were still adding stories to your "quilt." I hope you will add my story to your quilt; it would mean a lot to me. Thank you very much.
I don't know what life is like without Lyme. Well, just barely. I remember running the annual mile for phys ed class in 1st grade, and playing at the day care before kindergarten. But not an everyday life.
I was diagnosed with Lyme in 1991, when I was in the 2nd grade. That's quite a lot for a little person to handle, especially with everyother doctor telling you that you're a bit off your rocker. There were so many doctors, so many tests. I'm glad I don't remember most of it. Better to save precious memories on something better.
What I do remember are the symptoms. There is that tell-tale rash. I've still got it, actually. It is on the back of my head, in my hair. No wonder we didn't find the tick. Or maybe we did. Living in Minnesota, you find many ticks. I felt like I had the flu, but it never went away. All of the other symptoms were there; I don't need to list them. Most of them are still there; not constantly, but never actually leaving.
I have good days, bad days, good months, bad months. That seems to be the worst. Not the bad days, but simply having them. Plans can never really be made ahead, for it may be a bad day. Most of my peers don't understand this. Don't get me wrong, there are people that do, and I love them for it. But I can't help but feel guilty everytime I can't do something.
I know I'm a lucky one. I was treated relatively early. Nobody knows when I obtained it but I couldn't have had it for more than 7 years, since that is how old I was when I was diagnosed. I'm not going from doctor to doctor asking them why I have all of this pain, living in a total blank of reason. Instead, I travel from doctor to doctor asking them if they are brave.
Recently it seems none of them are brave enough, they won't look the disease in the eye and treat it. Instead, they flee, coming up with every reason under the sun for what is happening. Some go even further- they simply leave the room and don't turn back. I thought that was my job, if I was upset with the doctor!?!
What gets me the most are the people who've been treated. I don't know how that managed it, but they were bitten and went straight to the doctor. That doctor (a Godsend!) treats them right away. Poof. It is gone. Once, in the 6th grade, I had to make a timeline of my life. Right on 1991 I placed a big tick. When presenting it to the class, as everybody had to do, one girl asked me why I put the tick there.
I explained that it was a life-changing event (the only things we were to put on the timeline: life-changing events). She called me stupid and said "Well I had Lyme Disease but it only lasted a week because the doctors helped me right away. Why didn't you just go to a doctor?" Or something like that. I'm so thankful she did, nobody deserves an Infectious Disease.
In more recent times this is what I would call many, many "bad days" all smushed together. Most days holding a pencil is extremely difficult. It doesn't hurt to do so, but it is simply too hard. I've written a lot of my pen pal letters via the computer, and it makes me a little depressed when I do. I want to write by hand. I was on so much medicine for complications that I was having reactions to the medicine. Luckilly, I'm not longer on the super-meds. A trip to ICU helped that.
The doctor that has helped me the most, in recent times, is my chiropractor. She accepted me with an open mind and a loving heart. Knowing that every bit of pain that is gone is a blessing, she's helped get rid of the little "bumps in the road," such as constant back pain. One of her patients has a friend with Lyme, she lives a state away. I don't know the lady, but she has a doctor on the East Coast.
I can only guess who it is, but it is probably a good guess. The next real goal medically is to contact the Coast. I know it could be a long time, but that's okay. If it will help, I'm willing to wait.
In the meantime, I'm going homebound at school. When I feel up to it, I go for a class or two. I miss doing German full-time.
I've been doing a lot of crafts - simple things that I can focus on.
Lots of reading. Sometimes I'm too dizzy, unstable or weak to walk, so I use a wheelchair or a walking stick.
My story for the quilt isn't finished yet. All of stiches have yet to be sewn; I'm not done decorating my square, but I want it included.
It is a story still being written. Thank you.
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