Guest Author, Fundraiser, and Performer: Michal Victoria
Join me on this journey as I do a musical while under treatment for Lyme Disease! Please sponsor me at $2-10 per performance (13 performances) as I use this opportunity to raise money for those suffering from Lyme Disease who are homeless and/or unable to afford treatment. Monies will go directly into the gofundme campaigns of some of the neediest. Even a small contribution could give someone hope to stay alive. It did for me.
I can’t believe it, but rehearsals for Shakespeare in the Cannery’s “In the Mood” start tomorrow! I’ve had a rough 4 days this week where I was so weak and bed bound, I thought, “how the hell am I going to do this?!” But my healer came to the rescue and I had a treatment and am feeling like I can do this.
Donations can be made via PayPal at firstname.lastname@example.org
Guest Contributor: Michal Victoria
Sister of Syphilis is a phenomenal performance piece created by the one and only amazing, talented, and authentic Michal Victoria. I can’t tell you how affirming this piece is for those of us who struggle in similar ways and lack the ability to communicate the experience.
Michal only has $100 for treatment. Please consider making a donation or spreading the word. Donations can be made here: https://www.gofundme.com/michalvictoria.
Thank you so much! And thank you, Michal – this is such powerful medicine!
Bio: As best as she can report from within the cocoon, Michal Victoria is a performance artist, activist, writer, Pilates teacher, and sacred cow tipper. She has been struggling with Lyme Disease for 41 years.
Randy Buchler is a treasured small farmer and educator based in Michigan’s Upper Peninsula. He and his family run Shady Grove Farm, a highly efficient, diversified livestock and permaculture agricultural operation that provides high quality certified naturally grown products to the community as well as empowering educational opportunities to people of all ages.
The Buchler family needs our support at this point to help Randy get the Lyme disease treatment he needs and to keep the farm going at the same time. His health issues attached to the Lyme symptoms have become increasingly severe in the last few months and the most effective treatment available to him is not covered by health insurance. Without strong community support at this time, the future of Shady Grove Farm could very well be in jeopardy.
Hundreds of people across the country have all been touched deeply by the Buchler’s and their farm. They have poured their time and energy into their land, the animals, the community and work for the common good for many years. They have overcome many major obstacles in the past, as illustrated in the film. Now is the time to pour support back to them and help Randy get the help he so desperately needs and deeply deserves. Thank you for your time!
UPDATE: Randy has been able to start treatment and it is going well! He needs to continue treatment but is running low on funds. Please support Randy, the Buchler Family, the farm, and the greater community by sharing his story and/or making a donation here: https://www.gofundme.com/shadygrovefarm
Guest Author: Lois Janish, Lyme Warrior and Caregiver
I’m going to post my son’s story for him as he has said it’s important to do to help sick children and their parents cope and hope. I hope you can share this and that it helps others. This is my boy’s heart.
Evan has congenital Lyme. It was passed to him in utero from me. I was undiagnosed for 23 years. My story is on FB as well but not the focus here. The point in mentioning it is just to address the transmission. The CDC has controversial info on this. They are saying it’s not probable mothers can pass it on yet also stating that mothers with Lyme should take antibiotics while pregnant so they do not pass it to their newborns. Hmmmmm. So which is it? Is it impossible to pass to newborns or are we supposed to take doxycycline so we don’t pass it to them? Most importantly let’s assume their most highlighted info is correct…we are all supposed to take doxycycline when we get pregnant if we have Lyme.
What happened to all of us pregnant mothers who didn’t know we had Lyme when we had our children?
I’ll tell you. Right here. Right now. Continue reading “My Son’s Story: Part 2 of My Lyme Battle”
Guest Author: Becky Anne Michael, Caregiver
It had been the perfect night. As I wrapped up my fifth year of teaching, I went out to dinner at a local French restaurant with a group of students I had taught for four consecutive years. We dressed up, took our time in traditional French style, ate escargot, reminisced, talked about the seniors’ plans, and had the perfect night. Were my life a movie about the struggles and triumphs of becoming a teacher, it would have been the quintessential final scene, representing how far I had come as a teacher and how poised I was to live happily ever after in teacherland.
After our goodbyes, I got in the car and called A to say I was on my way home. He asked if I could stop by the grocery store to pick up a few things and I was happy to oblige. It was rather late, so I didn’t have a lot of time before the store closed. I drove over and started gathering items. However, as I grabbed a can of black beans, I noticed something. A smell. Perfume. There wasn’t anyone around me, so it wasn’t a person. I sniffed my hands. It was on my hands. I don’t wear perfume. I sniffed the handle of the shopping cart. There it was. The culprit. And if it was on the cart and then on my hands, it was surely on everything I had already gotten.
Already all too familiar with how intensely and easily perfume transfers from one surface to another, I knew what to do. I grabbed a bunch of plastic bags from the produce isle and made make-shift gloves. I replaced everything that was in my cart and continued shopping with bag-gloves as a barrier between the fragrance and the items I would bring home to my chronically-ill, hyper-sensitive partner. I finished up, paid for my items, and started bagging them (not the easiest thing, when you are using bags as gloves). As I did my bagging, I checked the items. In spite of my best attempt to keep the fragrance off of the items, it was on them. So, I called A and explained the situation. We decided that the only thing to do was for me to return everything. Because fragrance is so difficult to get off of one’s skin (and the fact that it was so late), there was no re-doing it. I just had to abandon my mission and go home empty-handed. Well, hands full of fragrance, but free of groceries. Continue reading “Yes, I Smell My Shopping Carts”
Guest Author: Julie Hagen
Hello everyone. We as a family, are in the unfortunate place of needing financial help from the kindness of others. Our medical journey started 9 years ago. Julie and Sid welcomed their first daughter Lexie into the world, a few months later Julie’s health started to decline. It started with joint pain and progressed from there onto other symptoms. It became difficult to lift Lexie out of her crib, twist and untwist baby bottles, and simple tasks became increasingly difficult. She began her search for medical professionals that could help find what was causing all of this and hopefully come up with a solution. After 3 years of doctors not having answers and sending Julie to specialist after specialist and having every test known to man, Julie lost hope and stopped searching. Thankfully just as Julie lost hope, a new found friend going through the exact same thing came into Julie’s life. That began Julie’s healing process of finding a specialist that determined Julie had Lyme Disease, Babesia, Bartonella and POTS in 2010. Since then she has also been diagnosed with Mast Cell Activation Syndrome, and RA mixed in there.
It has been a journey of fighting like hell to regain her health, having to close down her child care which in turn caused them to lose their house and move in with family. After hitting remission for 2 years, the Hagens were able to slowly work back up and start over again. They were able to finally move out of the extended families house and rent a town house. They also welcomed their second daughter, Emmie and Julie was able to work again. Things were going pretty good for them! Fast forward and Julie’s health has declined again and she is back to fighting to reach remission once again.
More recently 9yr old Lexie has been having her own health struggles. She was born with a metabolic disorder called MCADD (thank you Newborn Screening for saving her life) and also has Celiac Disease. This past month Lexie became very sick. She woke up one day sick and it just never really went away. She was throwing up, had high fevers, body rashes, weakness, fatigue, stiff neck, body pain, droopy right eye, sore/painful/swollen knee caps, dizzy. She spent 4 days in the hospital, came back for 1 day and then was back to the hospital for 4 more days, back home a couple days and back again to the hospital via ambulance. The last time she was brought to the ER she had a fever of 105.7 and was miserable. At this point she had already gone through 8 Iv’s because they kept infiltrating, over 17 pokes to try and get IV’s and labs, a picc line, brain MRI, and was really feeling traumatized. While in the hospital she had seen loads of specialists, had teams of medical professionals coming in, running tests, having her do exams with each professional, skin biopsy. No one had answers. She was medicated to control the fevers and finally put on antibiotics after I had been begging for it. I brought her to another specialist for a second opinion and it was determined she has Acute Lyme Disease with possible co-infections. Continue reading “The Hagen Family’s Lyme Story and Fundraiser”
Guest Author: Holly Roesing
I originally grew up in Connecticut – however, to my knowledge I was never bitten by a tick. I lived in the Northwest corner/Litchfield County for 30 years.
My husband and I decided to move to South Carolina after 9/11. In 2005, I was bitten by a tick, here, while on a 3 Day Outdoor Classroom camping trip with the 5th Graders at my school. The camp was located on Lake Marion, SC. I located a tiny speck on my stomach while showering and I knew I did not have a mole or beauty mark there. The speck was flush with my skin and it took everything I had to dig it out without taking my skin with it. When I finally removed it, I placed it on the sink and it started to walk. I had gotten the whole tick out. I immediately placed it in one of my Ziploc bags.
I knew enough to get the tick tested, but didn’t really know the symptoms. I sent the tick to my mother in Connecticut so she could drop it off at the Health Department. I ignored a few early onset symptoms like joint pain- and attributed it to doing too much (i.e., coaching/playing softball/being active). I did NOT get a bullseye rash.
Approximately 8-10 weeks later, the State of Connecticut mailed out the letter stating that my tick was a “Lone Star Tick” and it had tested positive for Lyme. I took that letter to a local doctor who didn’t know much about Lyme, but she put me on a couple weeks of Doxycycline. Continue reading “My Lyme – My Voice”