Some fun happenings at the event!
Preacher Stone will be playing there!
A huge thank you to Rocket Fizz (a supporting local St Charles business) for making 300 Lyme Aide goody bags for first 300 registrants! Limeade soda and filled with lime green candy!!! Thank you so much!
23 raffle baskets! WooHoo! All of them filled with really wonderful items!! 6 tickets for $5. Or 30 for $20. We will also have the Harley leather jacket, William Shatner autographed leather jacket and the custom painted band autographed guitar in or 1 ticket $10.
Beautiful leather jacket donated and signed by William Shatner will be auctioned off!!!!!
Hi everyone. I am the founder of this website. I am not even sure if that is the “right” term or not. But basically a couple years ago, I started a blog to organize all the information I found related to Lyme disease, co infections and it’s patients. I wanted a patient’s view, as well as all the latest research, support groups, events and news all in one place so Lyme patients and their friends and family could find any relevent information they were looking for. Sort of, a directory for Lyme disease.
I, myself am a Lyme patient. I have been battling Lyme diseaese and it’s co infections for over 20 years now, since 1991. You can read my full story here.
So what is happening now for me:
For some reason over the last year, I got really sick. I have been really sick for a long time. But I always had ups and downs. I usually would have a couple good hours in a day or have a couple “functional” days during the week. I could travel a bit, making it to Lyme protests or out east to visit my “Lyme” friends that I have made. It was NEVER easy but I could do it.
This year is different. I had to cancel plans to the last Lyme protest in Philadelphia. I cancelled all plans to go along with Paul when he goes to visit his family in Florida or Connecticut. In fact, over the past year I have slowly started getting back to homebound, and a big portion of my day spent in bed again.
Between back pain, dizziness and just being so chronically fatigued I cannot function at all, I feel like I am back to where I started and worse. It is very frustrating. Back pain is my worst debilitating symptom. Neck pain and constant shoulder sublexations are the next. I am back in physical therapy a couple times a week again.
My whole life since getting Lyme has always focused on activism. I have always wanted to help whomever I could, or somehow try to make the world see “we” (the Lyme community) exists. That we are suffering. Between organizing protests, Lyme walks, support groups, online and in person meetings and letter writing campaigns. I just felt that deep inside like something has to change and soon. I can’t watch another person lose their life, I can’t listen to anymore suffering, I can’t hear another doctor utter the words, “There is no Lyme Disease here.” This is the first time in ten years since being diagnosed, that I have had to drop out of all of that.
I have slowed down in activism, at least the “physical” end of things. I do continue online work and my foundation Global Lyme and Invisible Illnesses Organization with my awesome Australian friend and co founder, Karen Smith.
I think I have run the course in treating “Lyme Disease” in any traditional routes. I have done the long term antibiotics, the rife machines, the herbal protocals. I have done many things that I don’t even want to admit trying to find the path to wellness again. At this point I have found a couple things that at least help stay “functional” enough to make it worth being alive. Things like juicing that gives energy, accupuncture which can sway the pain in my back, if even for a couple hours and some other alternative techniques that I am trying. But these things are expensive and I can’t afford to stay consistant with any of it. I am $60,000 in debt to medical establishments that never even helped me.
The other thing that Lyme has seemed to affect is my teeth. I am in chronic dental pain. I have lost all molars now and just have my front teeth remaining. It is embarrassing to smile. One of my weird symptoms I have is not being able to get numb at the dentist. (This may be caused by a disease called, EDS. I have been to an EDS specialist now too, who told my doctor to treat me as if I have EDS Type II. I don’t have a tooth in my head that doesn’t need work. It hurts to eat, it hurts to even breath in on a cold day. But I can’t get anything done due to not being able to get numb. I have been put under anethesia twice it the last year to get teeth extracted after attempts at pulling them while I was conscious didn’t work. (Ouch!) So now I know I need to just go under again and get them all out and get dentures.
And as bad as the dental pain is, it is nothing compared to what I’m going through with my back. I seroiusly can’t handle the back pain. Yet, I have to because I can’t take pain killers or muscle relaxers because of adverse reactions to these meds. So I lay here, day in and day out. I have an adorable little grandbaby that all I want to do is hold her. I can for about 1 minute. Then my back instantly goes into spasms. I saw an EDS dr last week and he told me I shouldn’t be holding anything over 10lbs. So we are trying to make it so I only hold her when sitting now. I am going to physical therapy to strengthen the muscles in my back and shoulder. She said you can’t repair the ligaments that are damaged from Lyme and EDS, just build the muscle around them to help support the joints.
And then there’s the dizziness that never goes away. When I say dizziness it is like differnt levels of it. Sometimes vertigo, sometimes a feeling like I am rocking on a boat and all the time lightheadedness. I have head pressure all day and night. I feel like I can’t lift my head. Some days it’s getting harder and harder to read. I can’t think or remember anything.
I try to work on crafts as a hobby. In order to keep receiving help paying for my Medicaire monthly fee that they would normally take out of my SSDI check, there is a program that pays this fee, but I have to work for a certain amount of time a month and make at least $100. So to try to make these hours, I do crafts. My hobby had been making signs, distressed, shabby chic signs for wedding and home decor but I can no longer “sand” the wood or cut it, or hold the saws. So, I have started making clay dollhouse food. I figured I can lay in bed and do that. But even that hurts my back. Just everything does but if they take that fee out for Medicaire I won’t be able to pay rent. (Update: I have closed my show as I am not able to make anything since my shoulder started popping out of place.)
My boyfriend is in the process of applying for SSDI too because of Lyme so it’s been rough for us. We literally are living in a room that is less then 300 square feet for a year now. We would like to at least have a 1 bedroom place as living in this tiny room with two cats and a dog, is not helping the situation. There is nowhere to walk, to stretch or do my back exercises, we literally have a 4 foot spot to stand up as the bed takes up the whole room. We don’t even have any furniture. When my grandaughter comes over we just sit on the bed the whole time. (Upate: We have moved into a home with my daugher, her boyfriend and my grandaughter. We are all splitting rent four ways now so we are in a better home and environment.)
How Lyme Aide Picked Me to be the Recipient
One day I got a message from Shannon, a friend on Facebook. She was asking me if it would be ok for them to pick me as the recipient for this years Lyme Aide Ride. Last year they did their first Lyme benefit for my friend Char’s daughter, Erica. Shannon is Erica’s cousin.I had met Char at a Lyme Protest that we both went to in Chicago and we immediately became friends. Her daughter is going through the Lyme hell herself, as is she we believe. So after they did the benefit for Erica, they asked Char who should be the next recipient, if she knew of anyone in need. You can see the pictures from Erica’s Lyme Ride Event Here.
When Shannon first asked me, I said no. I was afraid people would be upset that I was not doing traditional Lyme treatment. Most people don’t know that I did what western medicine doctors had me do already, I have done what a couple Lyme doctors asked me to do already, I have gone to naturopaths and energy healers. I have done so much. So now I have chosen a route of just trying to function. I have sought out accupunturists and some other options that most people would might think is not “cure.” So maybe they would not want to donate to that? Maybe they would think that I was giving up or didn’t want to get better? I don’t know but I just didn’t think maybe I was worthy of being the recipient this year.
I am not asking for a miracle cure anymore. I have been sick for over 20 years. At this point, I just want to be somewhat comfortable/functional. I just want to be able to hold or sit and play with my grandaughter without it causing back spasms for two days. I want to be able to chew food again. I want to smile at people and not be embarrassed. I want to sit on the front porch with Oliver my dog and Paul my boyfriend. Showering daily would be a huge bonus. Somehow combatting this fatigue and weakness. If I could just get back to a functionality where basic human needs are met. These things may never happen, not just for me but for many of us, I realize that. But I know we have to hold onto hope, sometimes it feels like that’s all we have left.
So anyways, Shannon and Brian called me and after talking for a long time, we decided it would not only help me in my situation but in this year when I have had to drop out of so many activism events that I am so sad about, it would be yet another way to spread awareness. And being that the people who will ride for this event and participate in this event are mostly “outside” the Lyme community, it will be a great way to still help educate the public about Lyme Disease.
So I know I made this story probably way too long. And there is so much more I could say about the daily living with Lyme, the lack of help from the medical community that I’m getting right now, and …. well I’m speaking to the choir, you all already know. I’m sure many of you reading this are going through the same thing yourselves and again that makes me ask, am I worthy of being the one who is the recipient this year? But I was nominated and am very very humbled and grateful. I will do my best to “give back” always, through my Lyme organisation and websites and running my Facebook Support Group. I have some other ideas of my sleeve too with the money I receive to help myself and the community. So thank you Shannon, Brian, Char and all who are a part of this wonderful event to help Lyme patients, and spread awareness.
Special thanks to Preacher Stone who will be playing LIVE at the benefit after the Ride! Many of you know their song “Not Today” which was used on The Popular FOX Hit Series SONS OF ANARCHY. The series used their music on two seasons: Seasons 3 and again on Season 5.