activism, diagnosis, thoughts

Slipping between the cracks

In the last week, I have met or heard about three different cases of younger individuals who either died or were very ill with a combination of diseases that cause neurological and physical symptoms. I invariably have the same reaction in these cases – I think of Lyme disease and wonder whether they were properly evaluated for it. I often think of the saying ‘when you have a hammer everything looks like a nail’ and wonder if I should say or do anything. But I also know that I was headed down the path toward an MS or ALS or similar diagnosis myself. I only discovered that I had Lyme disease because I was lucky. A massage therapist, who I called to ask for help with my pain, suggested the diagnosis.

One of the three told me she had a false positive test for Lyme. This more than anything set off alarm bells in my head. How could I fail to wonder whether the ‘false positive’ was a true positive, given the lack of specificity in tests. Many doctors never tell patients basic facts about diagnosing Lyme disease.

In the end, I can’t be sure that any of these individuals have Lyme disease, and two of the three have passed away, so even bringing it up would only be a cruelty. But it breaks my heart to think of folks who are that ill not even being properly evaluated for Lyme disease, because I know that there is a way back from Lyme disease.

The passage of PA State law Act 83 in 2014 (the Lyme and Related Tick-Borne Disease Surveillance, Education, Prevention and Treatment Act) mandates education of lyme patients (I don’t think I’ve written about that success yet! I will have to post separately about that). But how can we educate those who fall through the cracks before diagnosis?

For now, at a minimum, I will speak up, even if I fear seeming like a hammer without a nail. But maybe it’s time to do more — find groups of outdoors focused individuals and tell them Lyme disease exists, and that it is controversial, for example. Feel free to share other ideas for how best to reach out to maybe-lymies :).

my story, thoughts

Life without major relapses

It’s been about 2 years now since I had a major relapse (meaning weeks and weeks of more severe symptoms). This is huge — it means that I am willing to take risks like signing up for a work trip, taking on something larger at work, and being more responsible for things at home without a backup.

Most recently it meant I could say yes to being on a program committee, a work event that I have not been able to participate in much over the last few years because I have restricted my travel to (mostly) no plane flights, and (mostly) no time zone changes. In other words, it means I can live my life a little bit more like I did before lyme, before 2006. But does it mean I am cured?  Continue reading “Life without major relapses”

kids, thoughts, treatment

June already!

I’ve been meaning to write a post (and answer comments) for a long time now, and life keeps getting in the way. I suppose that’s a good thing — I’m busy because I can be. On the other hand, I’m also busy because I still need more sleep and time to care for myself than I’d like, keeping to the routine in my treatment plan is time consuming.

I think the biggest change is that I am no longer  fighting the wrong thing. I relapsed, and I spent weeks fighting the wrong thing. I wanted to punch something … the lyme disease … but I couldn’t get to it, I couldn’t pick it up and squish it between my fingers and feel it pop and die. I couldn’t burn it and watch it shrivel up. I couldn’t do any of those things. Continue reading “June already!”

kids, thoughts

Liberating Constraints

Somebody asked me a few days ago, how I am able to live with and accept the impact of Lyme disease on my life. The resulting conversation helped me achieve a new understanding of what it means to live with a chronic condition.

Because Lyme disease is potentially curable, I find myself living with constant cognitive dissonance. On the one hand, I must believe I can be cured. Otherwise why treat? Also, treatment is less effective if you don’t believe in it. This creates a situation that requires faith. On the other hand, I must accept things the way they are. Otherwise I would constantly be unhappy with my lot. This is not always easy. After getting everything back, losing pieces of myself again is at times agonizing. There’s nothing I can grapple with physically in this fight, and sometimes I get tired of fighting. But in the end, giving up would be far worse than continuing, so I keep going. Continue reading “Liberating Constraints”

treatment

Off antibiotics!

I can’t believe it’s been over a month since I last wrote in … I certainly haven’t forgotten about this blog or having Lyme disease, but as an academic the beginning of the semester always rolls over me in waves leaving little time to step back and reflect. Fall is especially bad because there are many conferences to travel to (I just returned from a trip) and I always submit to an important conference in my field around mid September (just before my trip this year).

It’s hard to believe how far I’ve come in a year, but as I roll through my second year since diagnosis I often find myself reflecting on where I’ve been. Two years ago I was desperately seeking a diagnosis, unsure what was happening to me, and floundering at work as I attempted to sprint through what felt like molasses. A year ago I had finally come to terms with the prospect of long term antibiotics, only to descend into one of my worst periods ever. I will never forget my attempts to submit to that same conference deadline, which consisted of hours and hours of painful attempts to look sideways at my screen as I edited the most mindless parts of my papers interspersed with occasional moments of clarity in which I would sprint away from anything that could stop me from writing with an over the shoulder request to my husband to take over if kids were involved, and dive in to do as much as possible before the pain and cognitive dysfunction descended again. In contrast, leading up to this September’s deadline, I had only brief mild headaches and not even every day, with no other major cognitive impairments. Continue reading “Off antibiotics!”

my story, symptoms, treatment

Running the Numbers (Apr/May 2009)

I have entered another two month’s worth of numbers into my stats program and analyzed them. Of note is the fact that I was apparently hyperthyroid in Feb/March (and maybe before that) but went into remission in April. I’m gaining back my weight now, which apparently was caused at least partly by that.

I’ve created a new way of visualizing my data. The next image summarizes major symptoms since symptom onset (Fall ’06) through August ’08. Major events (such as the mold bloom) are marked at the bottom.

Continue reading “Running the Numbers (Apr/May 2009)”

my story, symptoms

Running the numbers (March 2009)

I expect this will become an (approximately) monthly post as long as I am still in treatment. I have entered another month’s worth of numbers into my stats program and analyzed them. This month is of note because I switched meds half way through –Penicillin was begun March 13th. At that time, Zithromax, Mepron, and Ceftin were stopped. I also lost 12 lbs sometime between when I last weighed myself (maybe over christmas?) and now, probably due in part to Ceftin causing me to have about 4 bowel movements a day.

The news continues to be good. The charts below illustrate the change in various symptoms from last month to this (click on them to see close ups)

Continue reading “Running the numbers (March 2009)”