I have Lyme. I’d like to not have it anymore. I also just want cake.
Last post, November something? Okay. Wow. Not the dedication I had committed to when starting this blog. Truth is, I hit a rough patch all of November through to, really, now. I think now it’s over. I think I’m pretty sure. Yes. Today it’s turned.
Cycle 9 in November wasn’t too terrible. One night of horrible throwing up all night, which at the time, I thought was the worst thing ever. But I hadn’t experienced Cycle 10 yet, so, not the worst. I glided through Cycle 9 fairly easily all things considered. But something weird happened when it ended. I didn’t clear out and get better on my med breaks like I usually do. No predictable immune flare a few days later once things awaken from the oppressing effects of massive doses of antibiotics. Just constant sickness. For the entire med vacation. And you know what, it really got me down. November was a really hard month. The months prior I had been riding high on my optimism and faith and knowledge that I was growing into something bigger than the person I began this illness with. But November really tested that. In fact I fought it every day. It makes me emotional just thinking about it. Just this smothering, crushing weight, bearing down on me telling me not to “go and do”, not to retain my hope, not to embrace this challenge in my life.
I was nauseated every day. I felt horrible every day. I felt so fatigued, worse than when I was even in the midst of Cycle 9. I recall washing my hair in the sink one day and retiring immediately to the dining room floor rug to recoup. Like, couldn’t even make it to the bed. Or the couch. Just wrapped my hair in a towel and walked 10 steps to the floor and collapsed. It’s not even a comfortable rug. It’s all natural woven fibers that feel like straw. I felt defeated not just physically, but mentally and spiritually. It felt like a really big setback. I couldn’t figure out why I wasn’t rebounding from this med cycle like usual. I felt forces working on me and my mind, stagnating my soul. Again, November was a really dark month.
My appointment with Dr. J was two days before Thanksgiving, and I plodded to the airport. I plodded on to that plane. The weight of another potential cycle yet to complete heavy on my entire being. I plodded in to his office. After some talking, a brief exam of my chest and lungs and organs and such, after putting me through some neurological function testing, he concluded I was toxic. I could have told him that from the get-go. I wasn’t detoxing. Not for lack of trying. Ammonia in particular. My haptoglobin was also low, almost non-detectable, suggesting a still thriving babesia infection. And this, despite aggressively treating it since May. However, bless my little spleen’s heart, my hemoglobin was still healthy and well. Dr. J’s exact words, “There’s nothing else I can throw at you, we’re giving you all I’ve got”. Me: “So… we just keep doing this until?”
The answer was yes, if you couldn’t guess. So I stay on the five anti-protozoals. You can imagine this warmed my heart.
Anyways, he put me on l-ornithine-l-aspartate to bind to the ammonia so I can flush it out. Okay, guys, this is where I get a little happy and call Dr. J a miracle worker. Two days later all symptoms cleared. Well, aside from my remaining Lyme-Complex symptoms. And this LOLA (abbreviated, stay with me) stuff, this ain’t cheap. My little two-week supply cost over $60. I’m on bottle #2. But we give anything to get our health back, right?
So let’s talk about Cycle 10. Going in to it I was depressed. There was a little fight in me though, more like a “let’s just get this over with” type of fight. I never complained, just endured. I foolishly told mortality to “bring it on” in a moment of bravado on a Facebook status 3 days in to my cycle. Spent the rest of the night violently vomiting in the bathroom. Three hours of sleep. Broken capillaries over my entire face… lovely purple and red splotches from forehead to jaw line… not just around the temples and eyes like I’d experienced before. No. My entire face. But really, I’m kind of getting used to this brutality. IV Tigecycline… I don’t even know how to explain how hard this drug is on my body… what it does to it… how it makes me feel. I swear I can feel it’s acrid fluids pumping in all of my veins like poison. If it wasn’t so darn effective I’d have gone back to Dr. J three cycles ago and said “Dude, no more of THAT“. But I’ve experienced more clearing of my Lyme symptoms on this drug than any of the previous combined. So, I tolerate the hell. Anyways, Cycle 10 ended 3 days ago. I feel cleared out now and no ammonia-driven illness this time thanks to LOLA. Dr. J orders us to run bags of fluids through our central lines after these cycles to flush out toxins. Normal IV fluid drips are 1 per second. We are to run these fluids wide open… 4-5 drips per second. I’ve always gone a little easy on these, simply because it feels like I’m water-boarding my heart at just 3 drips per second. But last night I ran that thing as fast as it would go. I put a liter inside of me in just over an hour. This morning my urine was orangy-brown. This is… new.
My guess is I got a ton of babesia-damaged red blood cells out in the open and flushed this time. Which is good. At least I’m hoping that’s what it was.
I just wanted to write a post today to talk about how dark and difficult this past month and a half has been. But only for the purpose of sharing that I still overcame. Lyme Disease treatment is incredibly difficult to bear. Giving in to thoughts of despair, hopelessness, darkness… is so easy. This disease is so unique in that none of us, NONE OF US, know when we will get better. Suffering month after month, putting your faith and trust in the treatment process, experiencing the difficult symptoms associated with killing and removing these pathogens from your body, is hard enough as it is. Add not being given an end date just amplifies every single aspect.
I have learned to adopt the mind-frame of NOT directly waiting for my end date, but living each day for what it is and trying to work on myself in spite of it. This process can give you so many opportunities to become better. Become bigger. Become something deeper and stronger than the something you were before. There are forces of good and evil that exist on this earth with us. The forces for evil don’t want you to expand your potential. They don’t want you to grow. They want you to become angry, bitter, resentful of life or the world or the institutions that deny the things us Lyme sufferers need. As we sufferers know, there are plenty avenues for that with this disease. Don’t give in to that. The forces for good allow you these difficult experiences so you can do simply that. Grow. Expand. Become acquainted with deeper parts of yourself that you may not be aware you have. Those things don’t come without challenges.
Despite my November “setback”, despite my month of darkness, I want to keep growing. I am not allowing myself to become obsessed with my treatment end date. I will exist in this illness, this treatment phase, this moment, and try to use it for good. Whether I am helping another or I am working on myself. I want to make each moment count. I don’t want to look back on this phase in my life and just think “Phew, got through that” or “Wow, glad that is over”, but I want to look back and see myself stretching. See myself learning. Watch through hindsight as my moments of supreme suffering softened my soul instead of hardened it. I want to look back and see myself present, using each day’s experiences to shape my future for good instead of just enduring and waiting for different circumstances. I’ve heard a lot of people describe Lyme disease as “alive but not living”. I can understand that. But I also know you can live with Lyme, until there is no Lyme. It just requires a paradigm shift. Try it.
Also, setbacks happen, bad days (or weeks, or a whole month) happen. Rebound. Two forces are tugging on each arm… make the effort to go with the good.
That’s all for today. Pardon my rambling.