How has Lyme Disease affected your life?
Sometimes I feel that I progress forward, and then Lyme pulls me back. It rears its ugly head and reminds me that I will never again be what I once was. I am a psychotherapist, so I’ve never believed in the term “normal,” but after contracting Lyme and living this life, I realize that there IS such a thing. Normal was before Lyme. Normal now has a name. It used to feel like my ankles were breaking with every step I took. It was hard for me to get up in the mornings (and I”m a morning person), and when I did, I felt I was losing my mind. I couldn’t remember my name at times, and at other times, I couldn’t remember the simple things like turning off the stove, or the name of my child’s teacher. Everything hurt, including my teeth, and I gained 20lbs. in 2 weeks. Of everything, this alarmed me the most.
I went to a doctor who informed me that I was fat, and that I had to exercise and there was no miracle pill for it. I never went back, as I only asked WHY this occurred, not what I could do about it. After seeing many doctors for over 2 years and feeling worse and worse, I finally had one who told me that I had Lyme.
The 30 day cycle of antibiotics was great, and all that 20lbs was once again lost. But a month later, the symptoms came back worse. I now gained 40 lbs. in 4 weeks. I was told I had Fibermyalgia, Lupus, and Rheumatoid arthritis. But the specialists disagreed, and asked me to see an infectious disease doctor. This doctor told me point blank that I had Chronic Lyme. He told me I needed a transfusion that cost $4K since it was a 4 week process. Instead, I looked online and found Steven along with others. I tried his protocol, and it worked for 8 months! I felt great! I did not lose any weight, nor did I gain during this time. But after that 8 months, I started swelling up so bad that I couldn’t see, and I gained another 20 Lbs.
This time, I was referred to a lyme specialist, who I have been seeing for a year now. I still swell, but I’ve lost weight and do not have nearly the amount the pain that I did. I realize that I swell more when the moon is full (weird, right?) and am foggy brained during a week when I only take vitamins rather than antibiotics. I decided that I couldn’t let Lyme get me down – so I’ve gone back to school and am attaining my Doctorate online. It helps keep me focused, and quite frankly, sane. My parents and my kids are supportive and loving, but I do not wish to be someone’s worry or burden. So I always push on, and hope that I am also inspiring my kids that even if they feel knocked down, they can get right back up and push through it. They can lay there for awhile, but cannot wallow in self-pity, as it does nothing positive for anyone.
I’ve gone gluten and soy free, which actually has helped tremendously. I’m starting to enjoy life again, but cannot get to excited or I end up laying in bed for two days. Stress is my number one enemy. I have been told that stress can literally allow the lyme spirochetes to survive and thrive. Living stress free is not realistic, but meditation and yoga helps. Having and needing to learn a new way of life is so different than wanting to learn a new way of life. Sometimes I forget this, and forge ahead. Then BAM, on goes the weight, and the rash on my face, and the fogginess and pain settle in. I’m not a big believer in “everything in moderation” and “easy goes it.” That’s my story. It’s been 5 years now. I can hope that one day I will fly like a butterfly, and find my normal again.
What inspires you?
Inspirations come to me in many forms. I love art and photography, and so IG has given me a way to view things that I might never have before. I love to read and write, and I love school. People are always inspiring to me. I hear my clients tell me their stories (I work in trauma), and I think that I am pretty well off. I love Tedtalks and…. sharks. I love sharks. I went swimming with Sharks in Belize with some friends last year, and it is a memory that I cherish. My father is a Vietnam veteran who has chronic lymphocytic leukemia, a rare form from Agent Orange. Nothing keeps that man down, not even having only 1/2 a calf. He runs every day, and inspires me to keep going. My dogs and my kids are my lifeline. I look at them, spend time with them, and all of a sudden, I know it’s gonna be alright. The concept of love is so much more now, so much more. One other thing inspires me and it might surprise you. Anger. It’s ok to feel anger, but it is how it is used that matters. I use the emotion to turn to positivity. For instance, “I CAN do this – darn it!” So I do.
“Fear does not decide my fate” – Anonymous
“It is what it is” – Anonymous
“Fall down seven times, stand up eight.” – Japanese Proverb