Opening the Secret Book
Hello Fellow Tender Foodies!
As you may have read from my friend Sue's earlier post, I have been battling something for a long time. For a long time, it was a mystery. For a year or two at a time, at different times, I was completely disabled, and almost died. Then popped back into life after working with an MD who is also a Chinese Herbalist to whom I will be forever grateful. Even after coming back to life, I would regress from walking on my hands in yoga class and on the beach, to suddenly not being able to walk on my own two feet with confidence or at all. Muscle weakness would take over my body with uncanny speed, and the well defined muscles on my legs would simply disappear. I gained 50 lbs in a couple of months, and people thought I ate too much. Then lost 80lbs and people thought I was sick or anorexic. That is simply a few of the many odd shifts in my physical plane that have happened at different times. I've continually altered my life and career with each relapse, have continually battled to get back to those handstands, because if I could do that, I could sing, write, develop relationships, and be of service to people in some way. Through my work. Through my life. I devoted a lot of time to more deeply and spiritually understand the "why" and "how" and "cure" for this - for many years not knowing exactly what "this" is. Finding equalibrium. Changing my diet. Learning more about food, allergies, and immune supporting diets. I've seen excellent physicians, good physicians and simply terrible ones. I had spent all of my earnings and savings, and my parents helped as best that they could when I couldn't do it anymore on my own.
A New and Unexpected Road to Recovery
I recently had a sudden, and unexpected relapse. Unexpected, because I had been in treatment for over a year, and was doing much better again. There were some major allergic reaction-type bumps along the way, which probably interfered with the healing quite a bit, but will save that story for another time.
I am finally working with a top Lyme Disease specialist right now in Albany, NY. He has discovered several co-infections that are common with Lyme Disease, including two types of pneumonia, and some kind of bug that has decided to work on my heart, along with the other muscles it likes to attack. A severely depressed immune system. Plus more co-infections that I am learning about now. It isn't simply one bug that sits in a tick's stomach, you see. It can be several. I had no idea.
It Changed My Life
This disease can bring a great deal of misperception and judgement and sometimes, cruelty - from doctors, communities, and even families. "You look fine, stop pretending," even as the muscles all over one's body are spasming so painfully, tears would come. Every single person who has Lyme has had this said to them while inside, they feel like they will die. So I kept my mystery disease a secret as much as I could, hiding, only coming out when in remission or when I could control my symptoms, planning meticulously how to work, get enough sleep, keep meetings, and be efficient; focusing mostly on work, and letting fun, friendships, and baseball games of my beloved nieces and nephews go by the wayside. Did I want to? No. I had to.
I also went from a performing opera singer on the stage, to a writer tucked away in my apartment. There is joy in both. I had always intended to do both. So I am very lucky to be able to do one of those careers now.
Then, I was told I had Lyme. It took a few years for me to admit that I had Lyme. I had other things, I don't want another disease. Good grief. This is not sexy. Not sexy at all. Yet, during this little life lesson, I have also come across many, many people doing battle wtih Lyme Disease in their own unique ways. Some suffering for a long time. Others, completely cured. It affects everyone quite differently. When I came out with the story through my friend and heroine Sue, many people overwhlemed me with the most delicious and healing support, which buoyed me when I really needed it, saved me, and surprised me. I had given up, and didn't realize it. Their support turned a bright light on the belief that, "I can't take one more relapse," and that this time I had actually believed it. I had given up, and they supported me into changing my mind. Sue piled me into my car and drove me to Albany, New York. The land where the magic doctor lives. Like I said, she is my heroine in this story.
There have also been a startling number of people who have said, "I think I have that," or "I know someone like that, or "I never knew it could do that to you!" They thanked me for opening up about it. They actually thanked me for allowing them to support me, which touched me more deeply than I can tell you. They thanked me for sharing information as I learned it. So, I decided to do that here, too.
Celebrities Raise Awareness
Lyme is hitting the news with a little more honesty, because ticks, one of the main carriers of Lyme, are also breeding like rabbits, and jumping on and biting more and more people and their pets. The news is also chock full of celebrities reporting their Lyme Disease or who have been misdiagnosed, like Kris Kristofferson. Doctors treated him for Alzheimers Disease when he actually had Lyme Disease. With Lyme treatment, his memory is back at 80 years old, and so is his life.
Actress Ashley Olson, musician, Neneh Cherry, musician Daryl Hall, reality star Yolanda Foster and Avril Lavine, as well as Richard Gere, and other celebs who have raised the level of awareness to a point of undeniability.
I have come to love the people I have met with Lyme - the ones who can't afford to get help or who give every last cent to try to get better. I see the same yearning in their eyes for life. i see how incredible people are and how interesting they are. These people have gained a spiritual depth, as their daily life slips by. They bring it with them as they recover. We need these people back in this thing called LIFE and to bring their depth of soul with them. It is time for more awareness on what Lyme disease is, how it effects us, and how it truly needs to be treated. So if you would like to start with my story, read here.
With a Lot of Help From Friends and Strangers
Friends - and strangers - are helping me get treated by one of the rare experts that exist in the world - the true experts, who have pushed boundaries in order to help an ignored population. And I continue to need this financial help to be able to stay in treatment until I am back on my feet. Thus, I am doing the only thing I can do to pay it forward, give back, or whatever the buzz words are these days for offering up the humble gifts you have, because others have helped you. I hope to interview my doctor, write more about insurance as I learn how to fit into a system that spits you back out, about treatments, new research, and tell the stories of the people who I meet along the way who have Lyme and help people with it. And simply open up my own soul after hiding for so many years. Frankly, this scares the crap outta me.
Because now, this opera singer turned writer, is writing about Lyme as I learn about it and as I get treated for it, and without all of the answers. Now that I can lift my head.
Fasten your seatbelts. I'm certainly fastening mine.
Sincerely
Elisabeth, The Tender Foodie
Read more about Kris Kristofferson's Misdiagnosis.
"He was taking all these medications for things he doesn't have, and they all have side effects," she says. She is wearing one of her husband's tour merchandise shirts. After he gave up his Alzheimer's and depression pills and went through three weeks of Lyme-disease treatment, Lisa was shocked. "All of a sudden he was back," she says. There are still bad days, but "some days he's perfectly normal and it's easy to forget that he is even battling anything."