I started participating in nanowrimo at the beginning of the month in the hopes of completing 50,000 words of a book in 30 days. At the beginning it sounded a little crazy, but doable. Now at 16,000 words on November 26, it seems like an impossibility. When I hit about 10,000 words I really felt like I accomplished something. But then I got thrown off. The election. Frequent phone calls from my son’s teachers about his “behavior”. Symptoms. Exhaustion. Unrelieved pain. Whenever I wanted to waste time on Facebook or write a blog post I denied myself in order to promote word count instead. I did learn some things from it. Most importantly I learned that I think I can collect enough words for a book. Just maybe not in 30 days. And maybe not this November. Maybe if I didn’t have symptoms to wade through. Maybe if I had fewer stressful things going on. Maybe a different subject matter.
The subject matter I chose was my journey with Lyme Disease this far. There is no shortage of material. At 16,000 words I am barely into year 2 of a six-year progression. The writing is emotionally taxing. Today I just want to say fuck it to everything. I’m so tired of fighting. I’m so tired of feeling like I do. I’m so tired of how difficult it is to fight this when every day it feels as if new unexpected challenges are thrown in my face.
I live on disability income and this month I signed up for direct deposit, thinking it would allow me to get my money sooner. I can barely stretch the money I get to last between paychecks. After I have paid for the necessities, rent, utilities, car payment, health insurance, I have just a small amount left. I must stretch this amount to pay for food for myself and my son, the miscellaneous money he always needs, gas, and cat food and litter. Forget things like clothes, etc. There is no spare money here. I was anticipating receiving my money on the 23rd as I usually get my check early before a holiday. But when I called the disability company to check on it after I saw no deposit, I was informed that I would be receiving it on the 29th, 5 days later than I usually do. It threw me into a tailspin, because there is nothing that makes me feel more desperate than being completely broke. I can handle it when my son is off with his other mother. But when he is here it feels doubly horrible to have an empty refrigerator. And it hits my self-worth, what’s left of it, thinking I can’t provide for him. After buying cat food last night I have $11 dollars left to my name to last 4 days. As long as I stick to my diet of yogurt and granola and toast and peanut butter I guess I will make it through.
The arrival of the holiday season is not helping. Society projects the idea that holidays are about spending time with family, blah, blah, blah. But in truth holidays are really about money, the ability to have it, to spend it, to buy things for other people. The fear of going to the mailbox has set in, no doubt containing bills I cannot pay. And there is no easy way to explain to a 13-year-old that there will be no presents under the tree unless I stop spending money on food or allow our lights or power to get shut off.
There has always been a self blame component to Lyme. Logically, I sometimes tell myself, I must be sick because I deserve to be sick. I must be broke because I deserve to be broke. I must be on the outskirts of society because I deserve to be here. Societies messages encourage this concept. Anyone who is disabled but able to walk must be faking it, or is lazy and not pulling their weight. Why should everyone have to work while we spend every day in bed no doubt enjoying our so-called “freedom” from the daily grind? Our families quietly tsk tsk tsk behind closed doors about how successful we used to be. They do this in part because it scares them to watch us. They can’t hold the possibility that someone who is up and working, living in a thoughtful way, can gradually become an invalid. They tell themselves it must be something we did wrong, or that we are mentally ill in some way.
There is also a sense of losing individual freedom and being betrayed that is a common thread of Lyme. I took opiate pain medication for four years. I followed all the rules and was responsible with the medicine that by easing my pain, allowed me to stay alive. The last time I went to fill my medication the pharmacist told me he wasn’t going to fill it because he disagreed with my doctor’s prescription of long-term opiates. He had looked through my record and saw that I received a prescription monthly. His tone was condescending and patronizing. I wanted to jump into his face, tell him I used to be on par with him. I was a medical profession with a reputation and power and the respect that comes with it. I had taken my meds as prescribed and had never taken an opiate without feeling all of the shame that comes with it in our newest “war on pain meds”. But I did not. I felt like a bug that he could squash under his foot. I was wearing dirty sweatpants and hadn’t had a shower in three days. I left the pharmacy with my eyes down.
The same feeling comes with the disability company. Although my claim has been approved until the day I am old enough to retire, I must still submit regular paperwork to them verifying that I am in fact, still disabled. When they decide to delay the deposit of my check until the end of the month, perhaps because it gives them a financial advantage, I am powerless. When a pharmacist refuses to fill my medication, I am powerless. When I cannot afford the copays on my prescriptions after paying my monthly insurance bill I am powerless. When so-called friends suggest I just need to pull myself together, or suggest that the medications I use for pain are really the only problem I have, I am powerless. When those same friends do an internet search on Lyme disease, decide they are experts and then try to educate me on the lack of credibility of the diagnosis, I am powerless. When I am abandoned by a once beloved family member because I am no longer the bottomless well of compassion and understanding they once benefitted from, I am again powerless.
In my continuing effort to heal, I have travelled far outside of the box of western medicine. I am now also traveling outside of the realm of the LLMD’s and their barrage of antibiotics, tests and never-ending decision trees of attempting to find whatever the root cause of this illness is. I don’t think any of us, all medical professionals included really understand the full truth of this illness. This collection of symptoms that have arrived and pulled the rug out on so many of us.
In another 50 years, maybe we will have a clue as to what is really causing Fibromyalgia, Chronic Pain, Chronic Fatigue, Lyme Disease, and all the other monikers made up by doctors and pharmaceutical companies to describe this collection of symptoms we currently carry. Most of western medicine says, “If there is not something we already know to name and describe your symptoms, then it doesn’t exist”. The Lyme doctors say, “Everything is Lyme and if you don’t get better with antibiotics then it must be a gene mutation, your thyroid, or worst case scenario, mold.” I don’t believe either of these pathways to diagnosis and treatment are helpful.
Whatever “it” is we are left on our own to attempt to heal ourselves. My quest for healing has led me to try something that at one time seemed unthinkable. I am stinging myself with live bees. It’s been about two months now. On Thanksgiving I stung myself thirteen times. It was a lot of venom to tolerate and I’m still recovering from it. I do believe this therapy has promise. There have been moments, or even a few moments strung together where I have felt certain that I am healing. But as is with all treatments for this collection of symptoms, the path is long and arduous. Moments of feeling better are inevitably followed by periods of darkness and symptom overload and feeling like I am at death’s door. There are no shortcuts to healing from this illness.
In the top of one of my closets I have a butterfly enclosure filled with approximately 60 bees. Three times a week I go about the delicate process of catching them one by one with tweezers and then strategically placing them in the areas of my body that are the most affected. Most of the stings are along the back of my spine in order to allow the venom to travel nerve pathways. This is a challenging therapy and I believe one that can be endured only when all other paths have failed. Yes, bee stings hurt like a mother. And there are moments when I am ready to chuck the whole process like today. This is the end of the road treatment for me. I’ve tried everything else with little to no improvement. I have met people in person who have recovered from Lyme using bee venom, and one of them is an apitherapist who has graciously assisted me in beginning this journey.
There are risks associated with this treatment. Many of the risks remain unknown due to lack of scientific studies related to it. Much of the knowledge comes from people with MS who have been stinging themselves in order to heal. There are people in the public eye who are claiming to have “invented” bee venom therapy for Lyme although in other countries people have been using bee venom for health for centuries. Because there are so many of us with this collection of debilitating symptoms that the medical community dismisses, the treatment of Lyme is now ripe for scammers and con artists. Almost every day I will see a new post “suggested” on Facebook about some new treatment for Lyme that is supposed to cure. The only limit to the number of treatments available is how much cash you have to squander. We are desperate, we are ill, and we are vulnerable.
If you decide you want to pursue bee venom therapy here is my advice. Do your own research, find someone near you who is doing it and is seeing benefits, and then prepare for a bumpy ride. No one along the way is going to be able to tell you whether or not you are going to have a fairy tale ending with bee venom. No doctor is going to support you in this therapy due to the lack of research and the liability involved. No one is going to be able to tell you for certain that this is safe or that there are no long-term consequences involved. No one is going to be able to tell you how meds you are currently taking will interact with bee venom. There are many false prophets gaining a lot of attention who are not educated as physicians or healers but are projecting themselves as such. The venom does speak for itself if you can endure the difficulty and get past your initial fears.
There have been times when I have been certain that Lyme came along to transform me in ways nothing else could. I still believe that but that doesn’t mean that there aren’t days when I just feel overwhelmed, burdened, and tired like I do today. There is not much I can do except to write, attempt to have compassion for myself, and wait for it to pass.