What About Me? This blog began as a support group for the Lyme disease group in the forums, but the support and friendship goes both ways, and people began asking for personal updates. So this was originally a Lyme news and information blog to keep the groups in touch with the personal stories of members as they shared a common disease. I believe that in itself should be encouragement and helpful to those of us living with this difficult disease. Unfortunately my journey does not end here, I am being treated for possible Lyme-MSIDS (myalgic encephalomyelitis - I would write chronic Lyme disease, but that is my controversial opinion) I have for several years, and maybe soon a couple of other mystery illnesses will be adding their symptoms to this blog as well. A little, ok, a lot, has changed since my first post. I gave up on the computer many years ago, I no longer own or use one. With the help of my internet provider and my friends, some of whom happen to be fellow bloggers and computer geeks, I can check email and a couple of blogs from time to time. Life isn't the same without friends and groups, but it is better than being sick and alone. I am living with a handful of diagnoses, possibly many more will be added later. As I began to feel more able to share personal stories, some written, some video (but sadly no longer a photography expert) this blog became a diary for myself as much as anything else. I may not update every day, but I'm still here, and if I change my mind or something else is going on in my life I don't want to leave it all for a week or two and then disappear without a word. I've found that having a place I can write, read what others have written, and talk with people who have been through the same thing is a comfort and even gives me a place to start to understand what I'm experiencing myself. Not that I will ever be as eloquent as so many of you who also blog, but it's an outlet and a place to begin to know others who also understand, because even they don't understand completely. I may not respond to all comments, or even many of the comments. But know I see them, and even though I don't respond, I appreciate you taking the time to talk to me. I know how hard it is to put into words exactly what is in your head and heart, and some of the most honest sharing has been through comments on a blog. I hope you will come back from time to time to see what I'm up to, what new thing I've tried, and where I've been. It's been a wild trip with many potholes and detours, and I've never traveled alone! But if there are a few of us out there, we can travel this road a little easier. There are some of you who know me in real life, and know I'm not this quiet. But many of you who are reading and commenting are friends I've never met! So I'm taking a chance that some of you I've never met will feel like I'm a friend you've known for a long time. I hope you will be one of them. There are so many blogs out there now, and so much information out there in the world, and I don't pretend to have anything other than my own small experience to bring to this blog. I do try to bring a personal touch, and my own real life experiences. I may not always get it right, I may ramble on too long about things that mean nothing to you or you think I should be working on. But just as I share my own personal struggles, I hope my experiences will resonate with you. One of the hardest parts of Lyme Disease for me has been the isolation. Many of us have been shunned by friends and family because of this and even our jobs, and our ability to support our families, have been threatened. I've been one of the lucky ones, I still have my job, but it is so draining and hard on the body and mind. I am a fighter, I've fought this thing, but I also need to be well enough to work to take care of my family. I hope maybe this blog will give others some support. With life sometimes, you take what you can get, and I hope you will find a little support and understanding here. I've been given the gift of friends who understand the power of this crazy disease and those who live with it who are fighting with me as well. For that I am grateful. Please join in, and share what is happening in your world, please share any victories, no matter how small, and offer hope and encouragement to others who are struggling, who are alone, or know someone who needs a friendly ear, or help putting a thought into words. For me, I'm just glad to have found this blog and get to share what I can. I may not always answer back, but I'll always try. The Founder of Team Lyme disease... I was reading Lymenet one day, and I had a lot of the same thoughts that had gone through my mind and heart at various times. But it wasn't just the same thoughts, it was the words I had used before. And I thought, I could post those thoughts. I was sure that even if only one person found my posts comforting, even if only one person made me feel less alone, it would be worth posting, and that by posting them, those thoughts would not die with me. The first entry was actually posted in 2007. I still remember writing it in my journal. I'm one of those people who is afraid of a lot of things. It took me a long time to realize I was afraid of more than just a lot of things. Maybe what really hit me the hardest was the number of people who didn't listen when I said, "This is a Lyme Disease Journey for me. This is not a disease to be pitied. It's not a disease that makes me or any other patient ugly or horrible, or a disease that is just bad luck." (I've quoted this before, but it feels like it was only a few days ago!) I never want to hear that again. It doesn't matter what I look like, what my weight is, or whether I'm on the healthy side or anorexic. What matters is that my illness has taken everything away from me, and it shouldn't. So, you can see my words are in bold. I really believe if we tell people, "You don't have to listen to me anymore, and it doesn't matter how I look, and I'm no different than anyone else. You don't have to listen to me. You can just dismiss me." It's a powerful thing to know that. When I found myself getting more angry at those people who didn't listen, or decided it was my fault, I remember looking at the phrase "It doesn't matter what I look like" and thought, "What does it matter? It matters what is happening inside me, and inside my mind." I don't know about you, but I know the difference between pity and compassion. I know the difference between fear and respect. I know the difference between seeing people as less of a person, and seeing them as an equal. I know the difference between pity and understanding, between understanding and acceptance. I used to see myself as if I had all these faults, these character flaws. I see people like me not as heroes, but as fighters who fought very hard to rise above that fear, that they were ugly, that they were disgusting. Some of us may have