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.

Low Dose Naltrexone: A new treatment option?

I am in the process of researching a potential new treatment for my Lyme disease, and this post is a place for me to summarize what I am finding. As I describe elswhere in my blog<link>, I think it is important to consider any treatment plan from multiple perspectives. In this case my research includes the mechanism by which it functions (“process data”), clinical trials (“frequency data”), the impact of side effects (potential risks), and patient experiences
(Lyme patients and also other diseases). I’ll go through each in order. The treatment I’m exploring is Low Dose Naltrexone (note I am linking to the Wikipedia article, which as of this writing is at best incomplete, since it does not include all the trials that have been done). A potentially better source is lowdosenaltrexone.org, which is run by the doctor who discovered this use of the drug and two other doctors. Read the rest of this entry »

Strong Evidence of Lyme Persistence in Monkeys

A recent study (2012) proved the persistence of Bb (Lyme) in Rhesus Monkeys. The researchers waited 27 weeks after infection in their first experiment, which is all I’ll discuss here, and then tested with multiple methods. The Eliza declined in treated animals, which might be interpreted to say treatment worked. However, in fact, spirochetal DNA and RNA were both detectable in multiple treated animals (not all, but some). DNA and RNA means that Bb was both present and active/alive in some sense (being transcribed). Here’s a quote:

Read the rest of this entry »

Relapse #n

Or maybe I should call this YAR (yet another relapse). Who’s counting, anyway? This one (maybe) was triggered by international travel and possibly stress. I’m about a week in, and as usual it’s both new and the same. Started with night sweats (while still on the trip), transitioned to nausea (new) and dizziness and now some pain as well (headaches, back and shoulders, etc). Not to mention the fatigue, sometimes just putting my own boots on gets me out of breath (those zippers!).

As usual, I find myself trying to make something new of this, because I have to do something. In the past I’ve developed new treatment plans, explored disability accomodations, and explored new doctors. This time around … I went shopping for canes (I had tossed my old one in a fit of hope and because it was falling apart). I’m heading to a conference at the end of April, and I’ve always found “seat canes” to be particularly helpful in that sort of setting, so I invested in a much nicer one than last time around. It arrives Monday, and I hope it will be as nice as it looks online! I’m using a hacked together cane at work right now (an old broomstick with rubber bands so it doesn’t slip!) so I also invested in a very simple wooden cane to replace the broomstick.

Really though, I want something more satisfying to do than shop for canes or try to sleep through it. Lying here in my office (in my lovely zero-gravity reclining chair; another investment in comfort when ill) a few minutes ago I tossed around feeling sorry for myself and even tried to work up to some tears or a good primal scream, but really it just didn’t feel right. It wasn’t going to change anything, after all.  Then I thought about working, but I guess I need a better project in my line up because none of my current ones were appealing enough to pull me out of the haze of pain I was in. So here I am writing a blog post instead (and it is helping :).  Read the rest of this entry »

Urgent need for donations

This was not my children’s lyme doc, but he is one of only a small number (2 or 3 that I know of) on the east coast who sees kids under 12, and a hero to many families with Lyme. Please help support him if you’re able. You can donate here. Even a small amount would make a difference, but he especially needs it by the end of the month:

Children’s Lyme disease network has a site to make online donations: http://www.indiegogo.com/JonesAppeal Read the rest of this entry »

Just a Cold

I’m miserable this week. And it’s making me happy. I’m coughing up gunk, sneezing, even slightly nauseous, and I’m still on top of the world. Why? Because it’s just a cold. It started on Saturday with a sore throat, and I am already starting to feel better. I can still walk my dog, I am still cooking and cleaning and taking care of my family, I missed only one day of work, and I can treat it with simple supplements, cough drops, and a warm bath or sauna (which I luckily have in the house because I used it to treat my Lyme disease). It is not a relapse which I feared might be coming on (as they have every year until this) at the start of December. I had the classic signs (nightly sweats, increasing fatigue days) but began a new set of supplements and seem to have staved it off. The supplements come straight out of the Burrascano guidelines, and include high quality fish oil, vitamin D, vitamin C, vitamin B, CoQ10, and a few specialty supplements suggested by my Naturopath. While on them (until this week) I didn’t even get a cold as my family cycled through more than one. And the relapse signs faded. So, pill popper I am not (by preference) but I’ll keep taking these!

I remember the days and days of being grateful for feeling well when I first came out of the worst of my Lyme disease (which I re-experience after each relapse), but today I am grateful for feeling lousy! And laughing at the very idea that a cold is a reason to give thanks.

Disability Accommodations?

I have spent the past two weeks exploring what it means to work with Lyme disease from a new perspective. I’ve blogged before about why I think it’s valuable to view Lyme disease through the lense of disability. I’ve also blogged extensively about work and Lyme disease. However, I’ve never really put the two together. An important question, for those of us who work with Lyme disease is what accommodations, if any, are appropriate to ask for, and how one might go about doing that.

First, it is important to know about the Americans with Disabilities Act (ADA), which protects people with disabilities from discrimination. The ADA specifically prohibits discrimination by employers with 15 or more employees, public entities, public accommodations, telecommunications, and so on. It was passed in 1990 and progressively narrowed by the courts in terms of the situations to which it applied. Thanks to an amendment in 2008 it was broadened again to ensure that it focused on discrimination across a wide range of disabilities. Because of that change, Lyme disease is now covered by the ADA.  Read the rest of this entry »

Repeat Relapses

Being out of treatment, I don’t have things to post that often anymore. Or perhaps I’m just too busy. Having gotten back from my sabbatical I’ve been thrown headlong into a very difficult semester. And when I don’t  feel well I have nothing to fall back on because I have no wiggle room left while doing everything I’ve been asked to do and still sleeping and taking care of myself.

However, Lyme doesn’t pay attention to those things, and so I’ve twice in the last 6 weeks had a week in which I had to step back. The first time I didn’t pay too much attention. It was after a trip, I was fighting a cold, and working hard. No wonder I ran into trouble. On the other hand the symptoms were unusual — tingling in my lower limbs is a new symptom (I think), and while the associated fatigue and shortness of breath when moving about were familiar, the tingling concerned me, especially when it was still going on a few days later. I also realized that when I’m tired like that I have trouble focusing (I see double).

Read the rest of this entry »

[Link Out] Views of Lyme

Thanks to Krystal’s Journal for this great set of views of people with lyme disease :).

I just had to share this great image — it certainly lightened my world a little today :).

[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.

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