"There is a name for people like you" said my LLMD on my fifth office visit. I forget the name she used... of course, that's my Lyme brain being forgetful. She says she sees them pass through her office every once in a while, like dynamite on 4th of July. She also knows the minute she meets someone if they will succeed with treatment, and she can tell in an instant if your significant other gives a fuck about you and your Lyme disease.
The type of person I am, is the type of person sitting across from her in pain, asking for more pain. Treatment for Lyme is weird. You want your body to feel an immense amount of pain, for herxing purposes, then you want to up the ante, because you know you've found a good drug combination, that's killing the bacteria off.
My LL informed me that few people my size can tolerate the amount of medication that she gives a 200 pound man. I smirk, because I know I can, and in an instant, the dosage goes up. I've coined the catchphrase, "I'm the strongest Lyme patient everrrrr." This phrase might come giggling out when I'm physically exerting myself, or I might think it, when a needle gets shoved in my ass. Physically and mentally, I know I am. Although, we all are. Anyone fighting Lyme disease with all they've got are the strongest Lyme patients ever. I am speaking about the ones doing everything they can to get better, the ones who want to get better, the ones who are taking this experience and learning and growing from it, the ones spreading awareness, making change, fighting to remain positive, building strength the best they can, letting go of what's out of their control (I struggle here), and the ones who see a future of health and happiness.
Don't get me wrong, I cry almost daily, but it's what comes after the cry that's the defining moment...the smile. It always comes back. I think I read that somewhere or heard it in a song, it's true.
If you are going through a challenging time in your life, what helps me, is to surrender to things that are out of my control. It is my biggest challenge and I work on it daily with baby steps. It's a challenge for me because it feels as though I am accepting being ill, like I'm throwing in the towel. I get out of that frame of mind by self talking myself through the situation. This helps me to see the difference between acceptance and surrender. One of the hardest things for me to witness right now are healthy, carefree people out living life, doing the things I am unable to do right now. I also struggle with having a limited energy supply (I never would have thought I'd run out of energy :). So I try to be in the moment, no matter how shitty that moment is and have trust that I will not be ill forever, and that I'm only temporarily limited in things. When you surrender it brings about opportunity and opportunity brings change.
I love visiting my doctor, we see each other about every 6 weeks now. She risks losing her medical license daily, in order to help myself and others seeking out long term treatment, for something the CDC says doesn't exist. When I visit, I get a medical treatment plan that is going to get me better, advice on men, women, and everything in between. She recommends these books....
She says they've changed her life. My orders in, I'm just waiting for them to show up at my door.
She's a tough lady, she's had Lyme herself and knows first hand what her patients are going through. It's the first time I've ever felt truly understood by a doctor, not that I seek to be understood necessarily. It just helps to have somebody fully understand what is going on in my body. Maybe it's just a good feeling to have somebody ask you all the right questions. She is the only single person in my life who really understands what I'm going through. I look at her as a mentor and I think she looks at me as a mentee.
My latest video is below, I'm getting a Bicillin injection. I don't really feel like writing about Bicillin injections at the moment. But please enjoy the video :)
*Good news* I found an amazing primary care doctor (1 in a million), who is willing to rewrite my Bicillin injections to help try to get them covered by my insurance company. The insurance will also only cover them if they are administered at the hospital...which I don't really get why. Any nurse is perfectly capable and allowed to do injections anywhere. Still waiting to hear back, but that would be great!
Thanks for reading!
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