I have Lyme. I’d like to not have it anymore. I also just want cake.
It’s 5:21 am. On a Saturday. I am awake typing a blog post. Whyyyyyy (Lyme).
It’s been less than 12 hours since my last antibiotic dosing of Cycle 16. The past four weeks – two weeks off meds (standard med vacation times these days) and two weeks on meds (standard treatment cycle these days) have been filled with, you guessed it, highs and lows. Let’s discuss.
My last med vacation was great. Best one yet. I did lots of stuffs. I painted a basement bedroom. I did a lot of yard work and started a little tiny two-person garden with a disproportionate amount of broccoli . I cooked dinner pretty much 80% of the time. I did some chores. I am gradually starting to take over the laundry from D’s hands – for the first time in our marriage. We all should be so proud. He is currently biting his tongue over the way I fold his shirts but like a patient parent, he congratulates anyways. I continually remind him that before he ever came in to my life I did things like laundry and dishes and chores but he has yet to believe me. I can’t tell if it’s because I still say words funny, or say “onion” instead of “oven”, or forget embarrassingly obvious things, or can’t follow a simple plot line in a tv show that would lead one to believe you can’t compartmentalize “inept”… or if he just thinks he truly is teaching me the ways of the adult. It’s the running joke in the house. D… we both know you know I used to be apt in life. Guys, I did. So my return to simple household chores is a milestone in my recovery – and a first for D since I got sick so quickly after our wedding day. So chores, peeps, is high #1.
Let’s review Memorial Day weekend. Because I WENT ON A TRIP. I put my shoes on, got in a car, and drove somewhere outside of my city limits for recreation. FOR RECREATION. Do I need to repeat myself?! I am, in my head. Over and over… *happiness*. So, we took a drive down to the North Rim of the Grand Canyon where we spent a cold, rainy, blowy afternoon enjoying occasional peek-a-boo scenery amongst clouds and then we hit up Bryce Canyon nearby where, get a load of this guys, I HIKED A 3-MILE HIKE.
YES, ALL THESE CAPS ARE NECESSARY. This hike went down in to Bryce Canyon and then back up again, and I fully expected to be airlifted out at the bottom. But this ole’ gal made it. I was BEAMING. I was heaving and my heart was pounding and at times I was dizzy and focusing just on my shoes and halfway through my left foot started doing its bartonella pain thing where every step felt like I was walking on broken glass so I walked on my toes for a bit and then my left hip blew up in pain but I still did it. A little over a year ago I could hardly walk – at times not at all. Even just mere months ago I was still unable to drive due to seizure risks and cognitive decline and now I’m road-tripping and hiking. I always knew I would get better, I did. But the process… oh the process… was so hard and trying and I had come to this mental place of acceptance of my disabilities and loss of life and it’s weird how getting better, something I knew would happen, surprises me so much as it does. Each piece of my life I regain hits me with a thousand pounds of gratitude and amazement. High #2.
So we come back from the weekend whirlwind trip and I immediately start Cycle 16. Cycle 16 hit me with a thousand pounds of bricks instead of gratitude. Low #1. It was the hardest oral antibiotic cycle yet. I experienced the return of a lot of symptoms I hadn’t seen since my IV days. No one would really tell though. I’m so good at hiding symptoms at this point. And I want to point out that this did not discourage me. There is no cause for it. We pulse treatment and dose with aggressively high doses mixed with biofilm busters and sometimes we just hit a pocket and I have a tough time. And then sometimes we dose and it doesn’t seem to catch as much. So is the way with treating Lyme. So anyways, Cycle 16 was a lot of me sitting on the couch watching tv, napping, and attempting to keep up with my new chores and making dinners all the while hiding chaos. There were two me’s. One me was blowing up. The other me was all like hey guys do you want green beans or peas with dinner?
I think everyone who knows me thinks I exaggerate things but no, this is an accurate representation. I’m like a super-trained police horse who knows how to remain calm during riots and gunshots and probably bombs. But all my stuff goes awry on the inside instead.
I experienced the return of the twitches. Not a ton, but enough to notice. These were precursors to my seizures during the IV stage so I monitored them quite nervously. They never lasted more than 5 minutes or so, thankfully. The return of having my breath taken away came with it. Here I am, chillin on the couch and suddenly my lungs won’t inflate or I can’t get air past my nasal passages or I don’t know what goes on when it happens but it’s literally the worst. I also enjoyed the return of excruciating back and rib pain. It’s not quite like someone took a bat to my body, not quite like broken bones, not quite like pulled muscles, and not quite like burning nerve pain, but quite like all combined. It’s an odd pain. A pain I don’t expect to experience in any other situation of life. A pain I certainly never experienced outside of Lyme. Another reason I suppose the Lyme community likes to tout “Oh you don’t know until you know!”. The pain is always the worst at night and first thing in the morning. Low #2. Cycle 16 post-Cipro days be like:
Despite being the worst oral cycle yet, I did have a high. This girl went to the gym and did a workout – while on treatment. Whaaaa??? I did lunges and some little squats and wall sits and tried a few miserable pull-ups and it was all baby work compared to my prior routines but it was surreal for me. Surreal to be back at that gym. Surreal to see again the squat rack I used to load up a barbell with plates and lift in. Surreal to see my favorite bench and to hide my keys once again in my favorite locker. I probably won’t be back again for a while, it was an experimental visit, but still. Again… I knew I’d get better some day but the actualization of it seems so unbelievable. Is this common amongst others? Like am I the only one? Is this normal for us super deathly chronically ill? Regardless, gym. High #3.
I still had a few weird rashes pop up and then the things in my field of vision that don’t belong there, oh and me and nausea are still BFF’s. Random pains in my head and episodes of crippling gut pain. It’s family walk time and Tara is doubled over on the pavement yelling and groaning but assuring everyone she’s fine and she doesn’t want to go home. Classic Tara. I’m currently typing with a large patch of skin on my left arm that blows up in this odd burny-scratchy pain when touched. But that stuff is mostly so familiar it’s hardly worth mentioning. Still, as I’m texting my friend about coming over for a BBQ at her home, it’s enough to require the usual:
In closing. Highs and lows. Such is Lyme. Today is day one of my next two-week med vacation. I plan to do great things. Maybe even steam clean my hardwood floors. This, girl, is on fire. I leave you with my favorite photo from the Grand Canyon adventure. I like to see it as a visual representation of something I do a lot these days. So this is me, looking back over the many cycles I’ve endured, the many low valleys accentuated by varying heights of highs, the great distance I’ve crawled, the vantage point I see from now, the health I’m starting to attain, and above all, the beauty of the journey. My Lyme experience… close-up it has just been dirt and desert and little flourishing life, but big picture guys… big picture it’s shaping up to be one of the most beautiful and sacred chapters of my life.