The Love Bite Diary started as notes to friends. These are friends from all over the world, brought to my laptop through that sorcery called Facebook. Until I catch up, the entries of the diary will not match the dates of the posts. I hope to add the stories of some of the incredible people I am meeting. In the meantime, I hope you are glad to be on this exploration with me, and that it is helpful to each of you in some way.
~ Thank you, Elisabeth
Things are continuing to progress here - I am walking better, although the stairs still terrify me. My speech is almost back to normal, although my neurological issues continue - my brain is on a 2 or 3 second delay behind my intention, and driving is tough, as mild spacial issues come and go like how wide the exit ramps are, etc. So it is great that I am just down the street from the doctor's office and treatment center now.
But this also makes it continue to be difficult to communicate. Especially about detailed allergen research on any medication, especially oral meds. Oral medications use fillers that include wheat, dairy, corn and tapioca. Tapioca has been a very common gluten-free filler or starch. It flies through the air with the greatest of ease and lands anywhere in the factory - and on products that don't contain it in their ingredients. It took a dangerously building reaction to make me realize why I was throwing up, swelling up, and feeling little steel fingers grab my throat after eating foods that never bothered me before. Vitamin C is sometimes derived from tapioca, too. More on that later.
When I first told my friend Sue what my secret life was like (when it was secret), she said,"Thank you for sharing this with me. This sucks! This must end. You are going to get fixed no matter what it costs." She wondered why I was hiding. She called me up and asked. She was hearing me slur my words as I tried to cover it up. She saw me grab onto handrails like they were life rafts as I gingerly went down stairs and had noticed that I was falling a lot. She could hear that I had given up.
Sometimes we just need someone to care enough to notice.
This relapse had actually started with my left arm a few years ago. It became useless. I was doing handstands and walking on my hands, and then found that I couldn't support my weight on my arm anymore. I went to different doctors. Some looked at my rotator cuff and prescribed physical therapy (which did nothing or made it worse), others just said, "huh."
Even the doctors who knew I had been diagnosed with Lyme.
I got back into treatment, and got back on my feet. Thought I was OK. But, there was an enormous amount of building and long-term stress in my life over those years, and my body just couldn't take it anymore. As soon as I stopped the treatment, my entire left side slowly became so weak I couldn't put weight on my left leg. Then my knees "disappeared."
As many experienced Lymies have said, "Lyme Disease loves stress."
If you are out there an experience similar bizarre things that come and go and make you feel suddenly older or hermit-like, I hope you have someone who reaches into your business and pulls you back out. If not, gather your britches and fight for yourself. You are not crazy. You are stronger than you think you are. We are ultimately in charge of ourselves, but, opening up to a trusted friend also opened the door to a new and necessary kind of support that I've never had before.
We need each other. We affect each other. So much. I learned that it is OK to be the weak one and need help. I hate that. I really, really hate that. I want to be the mother hen that gathers people in and helps them heal. But it is OK. To need help. It is OK, because it is the truth. Don't let anyone tell you that it isn't. Even if those people are those you love. Or "experts."
Thus goes this leap of faith. And an unknown road ahead.