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”

thoughts

The four stages of relapse

I’ve decided it’s time for an (admittedly tongue in cheek) exploration of my emotional reaction to relapse. Tongue in cheek not only because I’m comparing to a very well known model normally called “The five stages of grief” but also because the evidence suggests that that model is a poor representation of what really happens to people suffering from grief (as described in this news article which explores grief across cultures and a book by psychologist George Bonanno who has studied grief, its heterogeneity, and successful coping with grief extensively). So with those caveats in mind, here’s my version:

First off, I am pretty much always experiencing two things at once. Secondly, my order is different.

Denial + Acceptance

I seem to be a master of Cognitive dissonance at the start: Big voice in my head: These initial symptoms will not be a relapse. They WILL NOT BE  A RELAPSE. I will repeat that as often as necessary. Small voice in my head: I’m probably going to have a relapse, but it will be short and I’ll move on. What I say to others: I’m feeling fine. What I tell my husband: I’m having night sweats (or whatever other symptom) so be warned. Hopefully it’s nothing.

Bargaining + Creating A Solution

I go into research mode. My pattern is the same but the outcome is different each time. I come up with some “solution” that will make things better, research the wazoo out of it, start down that road, and if I’m lucky drop it completely because the relapse ends. For example, last time around I researched disability accommodations, this time around I researched canes and low dose naltrexone. The fact that I got to two things (and executed on them both) is probably a hint that this relapse has been longer/worse than usual. This comes with a fair dose of optimism: whatever I come up with, I’m convinced will help. In the case of my new treatment idea, I was stubbornly applying the placebo effect along with hoping it would work for the first four days I took it. On day 5 I could not ignore the symptoms that were coming back, but I’m still going for the placebo effect — though I’ve never experienced one before I’m going to believe this is a herx!

Anger + Self Doubt

I’m currently in the “I want to throw things (if only I had the strength to)” stage. Actually, I do have the strength to sometimes, but at those times I’m neither angry nor depressed so I don’t want to then. It’s when I wake up from a nap and my arms are too weak to even use my cane easily that I want to throw something. This is about when I also allow myself to start wondering if I’m not going to get better, should investigate other diagnosis, and whether I’m contributing enough at work to be useful there, whether I should just stay home and give my kids what they need, and why no one asked me to review any UIST papers or sit on any proposal committees this year.

This doubting is a bit ridiculous considering I am on a program committee and an NSF panel this spring as a reviewer, submitted 8 papers just this Spring (7 to top tier conferences), am co-advising 6 PhD students, teaching a class, helping with the hiring committee and tenure review, and spending plenty of time with my kids. I needed to say (and read) that so forgive me for the self-indulgence. But doubt I do nonetheless. It’s true that at home long walks are limited to when the dog and I both want them, I have lots of kid time, and I can use my energy as much or as little as I want, sleep when I want, play when I want, work when I want. It is so much easier that way, and perhaps that’s the most legitimate reason I phantasize about “just stopping”. On the other hand, at work I am valued for my mind (especially useful to feel and know that when the brain is sometimes fuzzy or difficult), and I contribute in a totally different way than at home. Work may be hard at times but sitting at home feeling sorry for myself while the kids are at school (worst case) would be far harder.

Recovery + Change

I have to believe it will end with recovery, as it always has in the past. A day will come when I get back on my bike, put my cane away and can just be myself again. Or maybe a day will come when I am comfortable in my new skin. But I’m betting on the first outcome. It may make it harder day to day since I don’t truly accept what’s happening to me, but it gives me hope for the future. Besides I get to experience “recovery” almost daily for a few hours here and there. And I am becoming more comfortable using my cane. I don’t use it at home — that’s a space to be myself, relax. But at work, instead of worrying about the attention it attracts I feel the positive energy and support it brings me.

A Good Remedy: Patience + Faith

So where does this all leave me? It seems like forever, but this all started getting bad only at the beginning of March. So I’m a month and a half in, looking at an international trip in a few weeks, realistically this could last 3 months given that travel. Not terrible compared to other relapses, not great either. What I need instead of all of the other things listed above is one simple item: patience. I need to persevere through this as through all the others and wait it out. And I need to keep the faith that this too will pass.

links

[Link out] How to be sick

I happened upon a nice blog post recently — 11 tips I’ve learned from 11 years sick by Toni Bernhard, JD. Here’s a nice quote:

I’ve discovered that it’s okay to feel emotions that appear to contradict each other…. [I can] be terribly disappointed but content with my life at the same time. My current disappointment is that it looks like I’ll have to skip the 30th reunion for my law school class. I really want to go and so I’m terribly disappointed about it but, oddly, at the same time I’m content with the life I have—a decent place to live, a caring family, a friendly dog.

When I make room in my heart for seemingly contradictory feelings, I feel more at peace with my life. My heartfelt wish is that you’ll learn to do this too.

symptoms, thoughts

Feeling better and a few firsts

First some news — I am happy to say that I am no longer suffering from constant headaches, have less dizziness, am not totally soaked when I wake up (though still sweaty) and generally seem to be improving. I still tend to need either an early bed time or a nap or both and have regular swollen and/or painful lymph nodes, but I am less dizzy, less out of breath, and generally happier with how I’m feeling. The improvement started as slowly as the original downturn, and definitely before I changed anything in particular. However it may have spread up as I began taking large amounts of vitamin D and starting the new energy-device. I can’t say for sure, and would not want to draw conclusions at this point. I probably won’t want to draw any real conclusions until I see either a total lack of symptoms (almost never happens) or I go for a year without a relapse. For now I’m just grateful for what I’ve got.

As for the firsts, I have in the last week for the first time had a doctor tell me he thinks I probably never had lyme disease in the first place, and had an acquaintance ask why I didn’t use make-up to cover up the fact that I look tired. Both of these, I am sure, are not uncommon experiences for others in the community. Neither threw me — I’ve been dealing with this long enough that I have fairly stable opinions about what’s going on and how I want to deal with it. However, they were a reminder of the ongoing mismatch between the expectations and views of the average outsider/doctor and who/what I am. I won’t even both to discuss why I think the doctor was wrong, I’ve spent plenty of time already on that in this blog.

But the use of make-up — that deserves a response, at least here if not in person. I know there are many opinions on this, and I have acquaintances with chronic illness who work very hard to make it as invisible as possible. I do not mean to criticize those choices in what I write. But for me, personally, make-up is not a solution. I don’t use it normally, and putting it on just to hide how I’m feeling seems counter-productive. My illness is invisible enough already. I appreciate the fact that people who care enough to look can see that I’m not well when I’m not. It makes it easier when I need to ask for help, or simply contribute less to an event, conversation, etc.  Additionally, while having Lyme disease does not define me, it is part of who I am. I am many things, and I don’t hide any of them. I  don’t see a reason to single this one out.

activism

Raising Awareness

I have to admit … there is a reason I don’t post as often: my motivation for posting on this blog for many years was the need to tell my story, reflect on my experiences, and (hopefully) help others in the process. As I’ve gotten better, the urge to post has gone down (aside from the obvious continual relapses, worries about my kids, my dog, and so on), and I think it’s likely to stay that way until I begin to find a new role, and a new reason to share.  Right now, that reason is raising awareness in my local community and more broadly.

In recent weeks, I’ve had the unusual experience of working closely with a reporter to tell both my own story and that of my research. The results can be found in two articles ([about my research] and [about me]). The goal was to spread the word to folks in Pittsburgh that Lyme is here and spreading, and to watch out for ticks.

I’ve never done something like this before, told my story in such a public forum, and given someone else control over the words used, the supporting (or debunking materials), the photos, every aspect of how I was presented. Despite that, having written a blog gave me a feeling of familiarity. Little did I know how different it would be: The readers of this article, the folks who have contacted me, include almost everyone I know in my personal life, many of whom I have never spoken to about my Lyme disease.  Continue reading “Raising Awareness”

activism, research

How does all that misinformation online affect Lymies?

I have been working toward this for two years now, and I can finally talk about the work we’ve done with the help of many volunteers. My paper, “Competing Online Viewpoints and Models of Chronic Illness” will be published at the premier venue in my field, the 2011 conference on Computer Human Interaction. For those of you with a medical background, in my field, this is equivalent to a journal publication in impact. Needless to see, I’m very excited to have finally gotten the work to this point, and extremely grateful to all of my co-authors, who helped me with every aspect of the research and writing, and all of the lymies who helped us to collect the data on which the study is based. I could go on for a long time about the personal accomplishment this represents and what it means to me (and I may in another post), but what I want to do here is say a little about what we did.

I am not a doctor, and however much I would have liked to do so, I am not qualified to conduct research that can identify a cure or otherwise directly affect the medical experience of individuals with Lyme disease. Rather, my area of specialty is information technology, and how people interact with it. Because of this, my work focused on how people with Lyme disease use online information in the course of their illness. I specifically wanted to understand how people negotiate the competing viewpoints present online (consider the contrast between the IDSA/Mayo Clinic/CDC/Wikipedia style information and that found on websites such as CALDA and ILADS). I knew that I personally had encountered both sets of information when I was diagnosed, and as a result I ended up putting my trust in doctors who did not treat me correctly. In my study, I wanted to document what happened to others, and identify possible solutions to any problems we discovered. My next step will be to begin to implement these solutions.

So what did we find? We found many examples of people who grappled with the mix of information online. Surprisingly, the kind of information that people trusted seemed to be affected by their diagnosis experience/initial beliefs about Lyme disease: Continue reading “How does all that misinformation online affect Lymies?”

thoughts

Biology or Behavior?

I am reading an ethnography [1] right now written by a woman who was misdiagnosed with fibromalgia. She discusses the way in which her doctors’ view of her and her symptoms defined (and destroyed) 8 months of her life. In the end, she is “saved” by a doctor who argues for the role of culture, gender, and other similar forces in her symptomatology, points out that some of her symptoms may be side effects of a medication she is taking, and that others are likely caused by her other diagnosis, which is an arthritic disease. The author benefits from this redefinition of her diagnosis and regains much of the lost quality of life caused by the fibromalgia diagnosis.

Although I have only read two chapters so far, I have a number of reactions to this ethnography which I think are relevant to the experience of Lyme disease. First, I want to provide further context for my thoughts by discussing the differing import of “behavior” (and culture) and “biology”in the patient/doctor relationship. Continue reading “Biology or Behavior?”