I went to the Lyme doc, today. It was not a happy visit.
It was warm outside, the A/C in our car still doesn’t work, and it’s about an hour drive, so by the time we arrived, I was feeling a bit foggy, and that might have led to the events of the visit, but Forrest clarified a lot of things for me (basically adding his view of what’s been happening), so I suppose this is as accurate an explanation of how things are as I can get.
The bottom line is that my LLMD tried, several times, to tell me there was nothing more he could do for me. I interrupted him every time, because, as I’ve told a few people, I’m not exactly ready to have the shit kicked out of my hope, quite yet.
The gist is that, after a year of antibiotics, despite my surgeries, I should be seeing some improvement. And there ARE improvements, it’s just that they’re weirdly specific, such as my pain being less generalized and more localized (which I credit the neurontin for, as this is a recent change). Or that there are many days, lately, where I don’t need a cane or the wall to help hold me up when I’m walking around my house. I’ve traded that extra mobility for quicker fatigue.
When he asked me how I’m feeling, I said, “eh?” and honestly couldn’t answer more than that. He looked instantly dejected, which made me feel horrible, because I LOVE my doctor. He actually cares. I don’t get a lot of medical professionals who do, and here’s one who works hard, does what he can, is close enough for me to reasonably visit his office (AND they take insurance!), and I’m over here shrugging like I’m just there for tea under burden of responsibility. I quickly tried to tell him about how I’m about the same, at least in terms of severity, though in different places than before, and he jotted a bunch of notes while nodding and looking grim.
I should note that my temperature was 100*F during this visit, and no one said a word (aside from the nurse reading it to me). I have a friend who has almost no internal climate control, any more, due to Lyme. I’m wondering if the same thing is happening to me, and if perhaps my doctor knew, and figured it wasn’t worth discussing, in light of the bigger picture.
He began to tell me about his colleagues and mentors who would possibly be able to help further (with I.V. antibiotics, which I can’t afford even if they did take insurance, because the doctors who provide those services usually only deal in cash, due to insurance companies being dicks), all while expressing regret that we’ve done so much and seemingly gotten nowhere. He kept using the phrase, “nothing’s changed.”
A lot has changed. A LOT HAS CHANGED. It’s just not linear – it’s not an upward slope or a downward spiral. It’s a mixed little pile of spaghetti noodles moving in all kinds of directions, some trending up, others trending down, many of them unreadable through the noise, but THEY’VE CHANGED. Two years ago, before I started Lyme meds, or was even completely confirmed to have Lyme, I was nanny to a two-year-old. I was going to graduate school. I was able to drive. I’m not able to do any of those things, any more, but the fact that I still have most of my mental faculties, whereas before I could barely finish an assignment due to fatigue, is a big deal. I get fog, still. I have trouble remembering if I washed my hair while showering, most of the time. But when someone asks me a technical question about Lyme, or something else I know a bit about, I am there, I am present, I am a machine. Two years ago, if you’d asked me what Bean (the girl I babysat) was supposed to have for lunch, or what time her afternoon bottle was, I’d have to consult a detailed schedule given to me…and this schedule was consulted the ENTIRE TIME I worked as a nanny. It wasn’t just a reminder to make sure I didn’t screw up, it was a reminder that, “oh, this thing happens, now.” Every. Day.
ANYWAY, through all this, we’re talking about my depression (which I know is affecting how I feel – but I know how depression affects me, personally, and the majority of my physical symptoms aren’t from that. stress is definitely causing some issues, but I can pinpoint which ones those are, too. i’ve gotten to know my body very well the past few years), my doc is trying to think of a referral to a counselor, and I’m thinking, “There’s more I haven’t asked him. Speak up, Bonnie.” All I could do was stare at the floor and try not to cry (I failed at that).
I finally implored him as to how we could check to see that the antibiotics are no longer working. He said I should take a break from them for however long it takes (basically, I’m to quit antibiotics. I mean, there’s no “pick it back up in 3 months,” it’s more like, “if you need them, call, but I don’t expect to hear from you any time soon”), and meanwhile he was going to want to visit Bartonella again, since it has more brain involvement, and my nerve symptoms are so bad that he agrees I should see a neurologist and get a brain scan and lumbar puncture to check for MS, among other things.
“Visit Bartonella again,” would basically mean that if I start getting more sick off of the antibiotics, he’s assuming, unless proven otherwise by the Lyme test I took, today (standard – the same test I took in 2011 that was “technically” negative, even though I did have a positive band), that my Lyme is gone and that Bartonella is the cause of my remaining symptoms…until proven otherwise, which, as I’ve covered before, means jack and shit because there’s no simple way of diagnosing Bartonella, either.
Given all of these things — my financial situation, the fact that having health insurance is no longer a boon in terms of my recovery, the lack of other Lyme resources in the area — the diagnosis is likely that this, right here, is my life.
My life will remain as-is for as long as can be reasonably projected, and then I will die from Lyme.
That’s not drama, that’s not conjecture. That’s a fact brought forth by circumstance.
I’m not saying I’m going to die soon, or that I’m giving up on life. I’m saying that, when I die, it will be because of Lyme, and it will likely be much sooner than I’d hoped, because life sucks, sometimes, and that’s all there is to it.
Right now, I am focusing on a TBDAlliance.org charity stream I’m heading (May 16-18, held here, 24 different streamers participating for 72 hours to raise money for Lyme research), and on trying to get my IGM stuff finished (I somehow managed to pick up a crapload of game reviews, and I have one to write every day through the 11th, which sucks, honestly, but it’s something to do). I’m also house-sitting for someone out in the boonies the weekend of the charity stream, and it’ll be good to be out in the middle of nowhere, surrounded by chickens, for a few days.
When I have more updates, I will give them, but this entry is nearly 1300 words, so I’ll just say for now that I appreciate everyone’s support these past few years. It’s meant more to me than you may ever know.