activism

Help Pass Federal Legislation

I know our collective political attention is focused on the presidential election at the moment, but the day to day acts of government and citizenship also deserve our attention. The Lyme community is mobilizing once again to try to pass legislation, which is very much needed. Please help. In the past, it has successfully passed legislation that helps to address needs such as education, informing patients that there is more than one standard of care, and asking insurance companies to pay for long term antibiotics. A summary (last updated in 2014) can be found on lymedisease.org, which gives a sense of how long this has been a focus of the community:

Every year since 1998, advocates have tried to pass federal bills to create a balanced advisory committee and a federal program to address the growing epidemic. None of the bills even made it out of committee until 2014.

The time has come again to move this effort forward — by attaching an amendment to a major piece of health care that the Senate is voting on. You can help by calling or emailing your senator and asking them to co-sponsor the Lyme and Tick-Borne Disease Prevention, Education and Research Act (S. 1503) with Sen. Blumenthal (the link has all the information you need and a way to send an email).

 

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 :).

activism

Re-Post: Ask your senators to co-sponsor Lyme disease bill (S. 1503)

Senators Kelly Ayotte (R-NH) and Richard Blumenthal (D-CT) have introduced the bipartisan Lyme and Tick-Borne Disease Prevention, Education and Research Act of 2015 (S. 1503).

(from LymeDisease.org)

This is a NATIONAL bill, folks, which means it potentially subsumes the need to pass these on a state by state basis and has a big impact. It would help countless people if passed. We need you to help support this bill by sending a letter to your senator! It won’t take long, please do it because numbers matter. The more that our state senators see how many people in how many states care about this, the bigger the chance it passes. If you are reading this, you have been touched by Lyme in some way. Please help.

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

RePost: Open Letter to Lyme Youth

Dear Lyme Youth,

Hello, I am glad to have a chance to have “met” you online, or at least received notice from Julia that you want to join us. Thank you for getting involved. As I’m sure you all know, our cause is a crucial one. Every step we make towards advocacy and awareness builds prevention. We don’t want anyone else to have to suffer from Chronic Lyme! I know we can all work together and support each other through this battle.

I guess a short introduction is in order. I’m Ariel, and I’m organizing LymeYOUTH for Lyme Action PA. I’m twenty-three, and I have Lyme and co-infections. I was studying community organizing at the University of Pittsburgh, but I am on medical leave due to my illness. So I have a double stake in this—I am dedicated to social justice and I want to spread awareness about this terrible disease. But I’ve never been a leader before, so please bear with me as I learn. My biggest hope for our movement is that future Lyme sufferers will get prompt, adequate and respectful treatment within the medical community.

We are organizing right now for a march on Harrisburg during Lyme Disease Awareness month. Hopefully, I’ll see you and other Lyme fighters there. Senator Greenleaf, who has been instrumental in trying to pass the Lyme bill for years, will definitely be there. We might even get Darryl Hall, who has Chronic Lyme disease, to play at the rally.

I am organizing the stories of youth with Lyme Disease and trying to create a database of your experiences. If anyone feels comfortable sharing their personal story with me, please let me know. I’d love to talk to you over the phone or through e-mail, whichever is best for you. If you aren’t comfortable, that’s alright, too. I have created an anonymous survey, which you can take right here.

Continue reading “RePost: Open Letter to Lyme Youth”

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?”