Mutual Trust

Saw this link tweeted by @underourskin

http://www.nhregister.com/opinion/20130825/dr-katz-of-lyme-disease-and-lemonade

I was struck by the balanced perspective (all things considered). I think the author touches on an important aspect of or barrier to effective treatment: trust.

For people without real personal experience with these pernicious little buggers, it is impossible to fathom the scope and depth of their impact. It doesn't help that for many of us our worst symptoms are transitory, cyclic or just plain inconsistent. 

It is hard to piece it all together into one picture. It is even harder to convince Lyme-illiterate doctors that we are not crazy, lying, whining or exaggerating. 

So many of our stories carry forward this undercurrent of a fundamental lack if trust: initial misdiagnoses or denial of possibility that Lyme might be at work; initial conventional/sanctioned (ie limited and demonstrably ineffective) treatments that had no impact or made things worse. And somehow this is too often seen by Lyme-illiterate physicians as proof that it either wasn't Lyme and/or we are lying. 

It isn't our fault that there aren't better tests, more reliable ways to indicate and quantify illness and recovery. Stop using a test that was never intended to be diagnostic and which fails to meet the basic requirements of reliability by missing more than 50% of positive results. Stop arguing and figure it out.  

The mere act of refusing to give the condition a name will not eradicate the disease. Most of us don't care what you call what is happening to us. Stop arguing and figure it out. 

Stop letting insurance companies use outdated guidance that has been called into question by reputable informed clinicians to deny coverage. It isn't our fault that current treatments take years, are obnoxiously expensive and still frequently provide incomplete recoveries. Stop arguing and figure it out. 

So many of us talk about our experiences with doctors who seem intent on denying the obvious. Too often I and hundreds ofthousands  of other Lymies have left doctors' offices having been dismissed as crazy/lying/exaggerating/attention-seeking. It is demeaning, humiliating, infuriating and inhumane. It makes it harder to work up the courage to try another new doctor. To be a guinnea pig or a freak. 

Too often our stories carry with them incidents of doctors outright dismissing that Lyme disease exists. Too often these doctors show no interest in finding out what's happening and how to fix it. 

This week marks my 8th anniversary with Lyme disease. Just about the longest relationship of my life and certainly the most difficult. Throughout this journey it has been difficult but helpful to keep in mind that not every symptom is Lyme-related.

Had I not done this, I would have missed another medical condition that without proper treatment could have eventually led to a swifter death than what may already await me. Still, I would still strongly discourage any doctor from ever again trying to tell me I don't have Lyme disease no matter what other issue he or she may be helping with. (Ugly ugly ugly is all I have to say.)

But I am fortunate to have found doctors I can trust. They listen to me, value my input and trust me. I listen to them and value their input and trust their expertise. Together we work to sort out how best to identify and treat what's going on. Without this trust the therapeutic relationship suffers. Illness lingers or worsens.

But I still face an uphill battle with neurologists and their over-arching callous dismissal (with a few notable exceptions). I spend sleepless nights worrying over an upcoming in-patient hospital stay for EEG monitoring, sweating from nightmares that they decide I'm crazy and don't let me go home. Echoes of past doctors' voices down tiled corridors: "There's nothing wrong that I can see." "You can't have Lyme; there are no reported cases in your area." "You're sick because you're depressed; you're not depressed because you've been sick for eight years and housebound for the past three." 

But this is much larger than my nightmares. This is the stuff of all our nightmares. And still my own question echoes down those same corridors, remains unanswered. At what point does the continued willful ignorance on this or any other illness amount to criminal negligence?

Spring Fever

I had an appointment with my Lyme specialist this morning. I’ve been unbearably nauseous after I take one of my antibiotics fairly consistently now for about a week. As I was throwing up my bagel this morning, I wondered if perhaps I no longer need the meds. The doctor was inclined to agree, to some extent. We’re focusing now on the Lyme, having beaten back the coinfections. At least for now. I’m ever conscious that this is a long process and I’ll likely have to relaunch direct assaults on the little buggers at some point in the future. One more life stressor may knock my knees out from under me, leaving me more exhausted and overrun with invaders than I am now.

But I’m making some headway with cognition and stamina. I’m still greatly fatigued, but when I’m up I can stay up for a little longer. I can concentrate long enough to finish a sentence, if I’m typing. Writing longhand is a gamble, and if anyone interrupts while I’m speaking, the thought evaporates like steam in the inferno of my Lyme-rage and frustration.

The insurance giant who was happy to take my premiums for twelve years have denied my appeal to their denial of my long term disability claim. I am in pain every minute of every day. I can’t stay awake for more than five consecutive hours, and for only a couple of those hours will I be coherent. My short-term memory is a joke. Showering still exhausts me. I can’t walk to the end of the block. I can’t get more than thirty pages into a book without losing track of both plot and character, having to start over again and again. (At least now I can just skim the parts I’ve already read and spark some vestige of memory.) Besides all of that, keeping up with my meds is a full-time occupation.

Who knows what it’ll take to launch legal action against the giant. And while I’m angry, it only flares for a minute then leaves me spent. Most of all, I’m tired. Beyond tired. I have no words for the depth of my fatigue, how overwhelmed I feel. But it is officially spring, and better days are ahead.

So How Do You. . .

At brunch with my wife our teen daughter & my super-conservative in-laws this morning my kid pipes up about her new bf's parents never having met gay folks before. How we got on the subject is lost to me now but I guess they have a lot of questions and that makes the bf nervous. My wife & I have answered just about every question a straight person can come up with & are as happy to dispel myths about lesbian families as we are Lyme Disease. My mil (who asks no questions) was surprised but then decided we must be like some foreign emissaries. "I guess it would be the same as if you were from Africa or someplace they've never been. Asking, you know, how do you do this and how do you do that?" Leave it to my sweet mil to hit on the one question we refuse to answer.