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, offer practical advice as I learn and get more on my feet, and eventually interview experts in the treatment of Lyme Disease. And recipes - in time, there will be recipes. 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
June 12, 2016
The Beauty in the Break Down
Thursday, I broke down at the doctor's office. I absolutely sobbed in front of the practice manager. So many things are hitting me at once, struggling with symptoms as I wait for all of the blood work to come back, not sleeping, slurring my words like a sailor on leave, handling the initial treatment plan and the changes in it, looking at the bills, getting to know a new nurse, finding out that my insurance subsidy was cancelled, running into perfumed people and having to run away (hobble desparately) from them as my lungs fill up, moving to a new, albeit temporary home when I feel like a truck and all of his tiny truck cousins hit me, stuff like that.
It sometimes feels like this world simply doesn't want me here. I beg to differ.
But then Thursday night, I slept a little bit. By Friday afternoon, I felt like trying the elliptical machine that is set up in the IV room at the medical center. The nurses encourage patients to slowly move their bods with a sexy little oxygen tube up the nose because it helps the IV drips go deeper into your system. I hadn't had the heart to do it yet - I tried the treadmill one day, but it felt like I was, as one patient put it, "walking on baby deer legs" with a tiny elephant settling his ample buttocks upon my chest, and then schooching around to get comfortable. But Friday, I was able to walk slowly on the elliptical for 5 minutes, and then another few, and then another few, and I could feel that my body has a lot of strength in there somewhere.
Some days I can walk. Other days it feels like my kneecaps are missing or about to snap in two. Or like Harry Potter did when he was the victim of a nefarious spell, rendering him boneless.
Saturday, my friend John came up from New York City after finding clothes that were not dried with Bounce, and to help me move into the new apartment. He walked into the heavily scented leasing office at the apartment complex to get the keys for me, since my lungs couldn't walk in there. He then cheerfully moved the bins and suitcases like they were fun little marshmallows. He patiently watched me eat some food at home, then plopped me down at an outdoor restaurant so he could sup, where real people and trees and sunshine lived. “So, how did I do with the no scent clothes? I did good, right?” He did good.
Saturday night I slept for several hours at a time. Today the tiny elephant seems much less interested in my chest. So, as my immune system gets supported and infections start getting a slap on the wrist, and loving friends step in to help, Health, like Kilroy peers warily over this wall that has separated me from life. Then, this afternoon I turned the oven on. The fumes from the oven cleaner that was sprayed but not wiped out before I got there almost knocked me out. I stumbled gagging into the bedroom to call maintenance to clean it. He sorta did, but Michael the maintenance guy was very kind and took it as seriously as he could. “This cleaner is non-toxic,” he said, then nodded genuinely as I retorted, “perhaps for you.” And I highly doubt that it is non-toxic for him. Someone like me is just that wonderful red flag of society. He put an industrial size fan in the apartment to air it out as the rest burned off. This evening, I am trapped in my bedroom, windows and doors wide open on this cool, wet afternoon and evening, eating my first food of the day at 6pm. The oven is off, but the fumes are still there at 8:27pm. My poor lungs.
Putting the Pieces Back Together As I Find Them
There is a long road ahead, and Monday I meet with the doctor to go over all of the blood work. Wish me luck - my hope is that the co-infectons are the kind that can be eradicated for good. At the least I will have the right plan this time to help me manage this and any relapses before they happen and be in a better position to do so, thanks to all of you. I write to you today, not because I want to complain or ask for sympathy, but because I am considering blogging about Lyme Disease. I’ve blogged about food and food allergies before but have never been comfortable blogging much about MY food allergies, let alone a mystery illness and now a complex, infectious, tick borne disease at which people have tended to roll their eyes. YET - so many people have had their lives completely altered from it, and it is one of the fastest growing diseases with such little knowledge gained in the medical world to support the patients. In order to treat patients properly, the medical system and thinking will have to be turned on its head. Can I help by writing? I don’t know.
My plan for tenderfoodie.com, before I had to abandon it, was to start with food and immune issues, then go into other diseases like Lyme as I learned more about it, and AFTER I was triumphant in my battle so I could keep myself out of it. I wonder what you all think about just writing as the fires are burning and before I know what will happen - it just doesn't feel right to be a writer and be silent if writing about it can help. I value my privacy dearly, but there is so little of that left now! There will be haters as there is a huge and ridiculous divide in the medical community STILL that claims Lyme is not real. Why? I have no clue. It is real. Besides myself, I have seen so many other patients on the broad rainbow of Lyme symptoms. Some people walk around and look fine and feel fine, while others look fine but are quite ill and have learned to mask their symptoms. Some have been disabled for years – stalked by insurance investigators looking for any excuse to revoke claims. Still others have lost the ability to move and walk and talk without help. This is a tragic thing to behold. Some have died because they had no help. Some are living in mystery, shamed by family, friends, employers or doctors because mysteries are great until it involves someone’s health. We want our money’s worth out of our relationships, don’t we? At this clinic, very severe cases seek healing, and I have been seeing more of these firsthand. Jumping into the conversation personally will invite comments, well-meaning or shaming that will upset me. Insecurities of other people and of my own will arise. I am not sure if I can handle it.
Right now, I need to focus on my own healing. I need to start working again. This is a priority. But as I heal, I write. I can’t help it. As I get my writing faculties back, and the muscles in my arms and hands function more consistently; as I see the seriousness of Lyme around me, talk to more and more Lyme patients and hear the nurses’ most incredible perspectives, I feel an overwhelmingly protective battle cry. It feels like it is time to appear between the trees like Kenneth Branagh in his St. Crispin’s Day Speech as Henry V: “for he that hath no stomach for this fight, let him depart.”
It feels like this needs to get personal, “ … Then will he strip his sleeves and show his scars and say, ‘these wounds I’ve had on St. Crispin’s Day!'”
And that the timing might be right, “… All things be ready if our minds be so!”
You are helping me, and with your support, maybe blogging and showing my wounds a little can help others. I am putting another toe in the water, here.
Please feel free to comment below or send your thoughts to me in a private email. I appreciate anything that you have to say.