November 1, 2009 at 8:53 pm (my story, thoughts)
Tags: family, thoughts
Those of us with chronic conditions spend a lot of time wondering how to manage their impact on our own ravaged bodies and spirits. But along the way, it’s hard to ignore the impact they have on our families. I know that has been a concern with me in my own family. Unlike the extended family which may or may not grasp what is really happening, the impact on the immediate family can be very direct. Even for them, though, a condition like Lyme disease can be confusing and invisible. How this affected my husband and our relationship is a topic for another post, but what I want to concentrate on here is how it affected my children. I have a (now) 4 year old and (almost) 6 year old in addition to a husband who have journeyed through my chronic condition with me over the last three years.
I have found myself writing about this more than once in the past few months, often in impassioned emails supporting friends or acquaintances suddenly thrust into a form of mothering they neither wanted nor planned for. For myself, perhaps the hardest part of this is finding the balance between putting myself first and protecting my children. Here is what I have learned over the years, and some details on how I coped. Read the rest of this entry »
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October 28, 2009 at 9:09 pm (research)
Tags: activism, doctors, thoughts
Over the weekend, I had the privilege of attending the LDA and ILADS sponsored conferences on Lyme Disease. I left Pittsburgh worried that I would find the three days of talks I planned to intend incomprehensible, boring, or simply overwhelming. I returned having soaked up hour after hour of information. The material engaged me in so many ways. As a person with Lyme Disease I found myself learning to understand my own condition, hearing about how doctors actually make treatment decisions, discovering with scientists new knowledge and promising possibilities for tackling the beast inside me. As a researcher studying Lyme disease I was delighted to discover other social scientists studying its effects in the schools and in the workplace, and to make contact with possible collaborators in the activist and scientific communities. Perhaps most surprising was the power I felt from being in a room full of other people who all understood, cared about, and had been forever changed by their encounters with Lyme Disease.
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October 12, 2009 at 9:29 am (research, thoughts)
Tags: activism, lyme-wars, resources, thoughts
When you live in the nether world of questioned diagnosis, you spend a lot of time wondering if perhaps those doctors who say the problem is in your head, your lifestyle, and your diet are right. In my case, I was lucky to have a variable enough illness that I was constantly reminded that I was not the cause — as soon as I felt better I did more, no matter how short a time it lasted. I never had to think about it, plan it, or convince myself to do so, I just DID.
Lyme disease patients at least have the existence of a known pathogen to hold onto when they fight the external discrimination, and associated internal questioning, that characterizes their disease. For those with Myalgic Encephalomyelitis (known popularly as Chronic Fatigue Syndrome), until this week, that did not exist. On October 8th, the journal Science published an article by Lombardi et al. titled “Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome.” (also see this discussion by the author of Osler’s Web). Pamela Weintraub, in her blog Emerging Diseases reflects on the continued efforts of physicians and researchers to label diseases like Lyme disease and Myalgic Encephalomyelitis (ME) as pyschiatric illnesses. This is a form of discrimination and institutionalized myopia that has systemic negative affects on patients. It stifles research, reduces access to treatment, and forces patients who are already fighting a difficult disease to also fight for respect. Perhaps worst of all, they must devote mental and physical energy to all of this, while simultaneously fighting the internal battles necessary to keep believing in themselves despite a lack of definitive anything and constant encounters with naysayers. Read the rest of this entry »
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October 9, 2009 at 9:01 pm (treatment)
Tags: antibiotics, cure, fatigue, headaches, healing, massage, progress, stats, summary, thoughts, visualization
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. Read the rest of this entry »
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September 6, 2009 at 9:55 pm (my story, thoughts)
Tags: activism
Our local paper had an update about Lyme disease this week. The impression it left the reader with was that there is “nothing new here”, there will be a small number of new cases this year in Allegheny county (20-30 I think the article said) and generally not to worry. Considering that this same paper had some relatively comprehensive articles about Lyme disease (e.g., this 2001 article), it ticked me off to see them waste space on something so uninformative rather than discussing tick safety education or talking about the real impact of Lyme disease on the region. I decided to write a letter to the editor of the paper.
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August 13, 2009 at 7:08 pm (infection, research)
Tags: venereal sexual transmission
I’ve been wondering on and off for some time whether I need to worry about sexual transmission of Lyme disease. Now I’ll be honest, although I love my spouse very much, it hasn’t been that much of an issue in the last year or two. But I’m starting to feel a little better, and the last thing I want to do is create a husband who can’t get off the couch just when I’m able to enjoy him.
Humor aside, I decided to do a literature review for myself on the issue. Not being an expert in this field, I am trying very hard to avoid much interpretation these results, but here’s a raw dump of what I found (note: Bb, and Borrelia Burgdorferi both refer to the causative agent of Lyme disease, the spirochete Borrelia Burgdorferi and (in some cases) related strains that also cause Lyme disease). Read the rest of this entry »
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August 5, 2009 at 7:42 am (research, treatments)
Tags: lyme-wars
Quick update to my previous post: you can now view a video archive of the IDSA hearings online here: http://webcast.you-niversity.com/idsaArchives/
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July 31, 2009 at 9:36 pm (research, thoughts)
Yesterday was a landmark day for the Lyme community: An opportunity to try to sway the Infectious Disease Society of America (IDSA) toward a more generous description of Lyme disease and its treatment. The IDSA guidelines are curretnly used to guide the treatment decisions of many doctors from specialists (especially Infection Disease doctors) to family physicians. Insurance companies also sometimes use these guidelines to determine whether to pay for treatment. “Lyme Literate” doctors (termed LLMDs) and groups such as the International Lyme and Associated Diseases Society (ILADS) oppose these guidelines, and it gets pretty nasty at times. I’ve termed this the “lyme wars” in this blog and have a page full of links that illustrate both sides of the issue. Much of my first year with lyme disease was spent trying to figure out what to believe in the face of passionate researchers from both sides writing articles that argue for each perspective, passionate doctors from both sides telling me not to believe the other side, and passionate organizations from both sides fighting to teach patients and doctors alike what to believe so that they will not be mistreated.
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July 27, 2009 at 9:19 pm (my story, symptoms, treatment)
Tags: progress, stats, summary, visualization
I have entered another two month’s worth of numbers into my stats program and analyzed them. I had my best month ever in June, and it is easily visible in the chart included below. I had many days with only one or two symptoms, and felt much better, than I have since I became ill. The mean number of symptoms per day was 4 in both of these months, as opposed to 8 or more in past months.
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June 24, 2009 at 9:59 am (my story, tests, treatment)
Tags: alternative, doctors
I was hesitant to even write about this experience, because who wants to admit it, but I wasted a lot of time and hope on something that I shouldn’t have. The reason I am telling you this is that if you are ill you have probably faced the same temptations I do, and maybe we can all learn something from my experience.
What exactly happened? I desparately want a cure, and I fell for the promise of one…
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