May is Lyme Disease Awareness month. This coming Saturday is the first of June. So why did I wait so long to write this blog?
It is always much easier to spread awareness when you can do it from an objective standpoint. It is always easier to quote statistics and point people to stories to help support your argument when you don't feel personally involved.
Unfortunately, when it comes to Lyme Disease, I am personally involved... and that complicates matters.
All month long I have been tweeting (@umdeaconjulie) and sharing things on Facebook about Lyme Disease, but most of it was just passing along the work that someone else had done.
Somehow, writing about Lyme Disease takes so much more effort and so much more energy than writing about an issue I may know about but not face day to day.
And this month I have been faced with Lyme Disease each and every day, because this month there were two people living in my house with confirmed cases of Chronic Lyme Disease, one with Lyme induced Autism, and one who most likely has Lyme or one of it's nasty co-infection cousins but is fairly asymptomatic and terrified of getting tested or treated.
Lyme Disease hits our home, our family, each and every single day. (Those new to this blog can look back at some of the earlier posts to see some examples of how).
I personally have made a great deal of progress in my recovery... though I seem to have hit a wall. Because I have been battling the symptoms of this chronic illness for the past eight years, most days I do as much as I can to avoid focusing on it. Because, to be honest, when I focus on it I often find myself getting depressed. I know I shouldn't. I know I should focus on the progress I've made in those 8 years since my diagnosis. I know I should celebrate the fact that I am no longer bedridden, or that I can walk without the assistance of a cane now. But, thinking about how far I've come in the past 8 years also makes me think about where I was 9, 10 or even 20 years ago. And then I mourn the loss of my late 20's and early 30's to this horrible disease. I mourn the fact that I never achieved my goal of having two children because Lyme stole my ability to reproduce without serious risk to my child (then I sacrificed my uterus because the Lyme was slowly and painfully destroying it anyway). I mourn the fact that many days I don't have the energy to devote to being a mother to my one child. I mourn the fact that my undiagnosed Lyme was passed on to that one child and the fact that as a result of his congenital Lyme he developed an Autism Spectrum Disorder.
Then I feel guilty, because I know that the best advocates are those that know personally the horror of living with a particular disease.
Then I get overwhelmed by all the mourning and the guilt that I give up and try to distract myself with something else so I don't need to focus on it anymore.
But I just can't do that this May. I have let the Lyme world invade my world. I know many people in the "Lyme community" that are facebook friends with each and every person they ever meet that has or may have or did have Lyme Disease. For those that are severely ill and homebound it is a lifeline. I've never been an active part of that community, like I said, it's easier to try to avoid it. But this May my mother is visiting. My mother is an active member of the Lyme community. So I actually read a few of the links she posted. Then I shared a few links that others in the Lyme community posted.
This is partly due to the fact that this past weekend I joined several hundred of them in Washington, DC for a rally. The goals of the rally were two fold. 1) to have a place for the Lyme community to gather and support one another and 2) to provide an avenue to educate the public about the existence of chronic Lyme and the challenges those of us with chronic Lyme (and co-infections) face on a day to day basis. The majority of the day was spent with patients and doctors sharing their stories (I even spoke briefly). Stories included successes, various treatment plans and therapies, and of course challenges. Among those challenges discussed was, of course, the fact that the Infectious Disease Society of America (IDSA) rejects the very existence of chronic Lyme and, because of this, most insurance companies follow their guidelines which means long-term antibiotic treatment is denied to patients. This, in spite of the fact that Lyme literate doctors (LLMD's), particularly those belonging to the International Lyme and Associated Diseases Society (ILADS) know that two weeks of antibiotics is not enough to prevent chronic infection.
But I digress...
The rally ended with a little march around the White House to help spread awareness even more. This of course was no easy task since the "little" trip was several blocks and for many with chronic Lyme, that's not "little" at all, particularly those who were hobbling with canes or pushing a wheelchair. But we did it. We walked through DC chanting about wanting a cure. We held our signs (high, when our arms could stand it). We handed out pamphlets to anyone who would take one. We did our best to raise awareness. And we all decided that if it saved one person from developing a chronic case of Lyme disease it was well worth it.
I am not going to spend a lot of time in this blog writing about the controversies surrounding chronic Lyme disease and its diagnosis and treatments. There are others who have done this already. I just wanted to take a moment to give a shout out to all the "Lyme Warriors" here in the USA and around the world who have joined together this month to help raise awareness. Keep fighting friends. The road is difficult, the battle is long... but we're in this thing together.
It is always much easier to spread awareness when you can do it from an objective standpoint. It is always easier to quote statistics and point people to stories to help support your argument when you don't feel personally involved.
Unfortunately, when it comes to Lyme Disease, I am personally involved... and that complicates matters.
All month long I have been tweeting (@umdeaconjulie) and sharing things on Facebook about Lyme Disease, but most of it was just passing along the work that someone else had done.
Somehow, writing about Lyme Disease takes so much more effort and so much more energy than writing about an issue I may know about but not face day to day.
And this month I have been faced with Lyme Disease each and every day, because this month there were two people living in my house with confirmed cases of Chronic Lyme Disease, one with Lyme induced Autism, and one who most likely has Lyme or one of it's nasty co-infection cousins but is fairly asymptomatic and terrified of getting tested or treated.
Lyme Disease hits our home, our family, each and every single day. (Those new to this blog can look back at some of the earlier posts to see some examples of how).
I personally have made a great deal of progress in my recovery... though I seem to have hit a wall. Because I have been battling the symptoms of this chronic illness for the past eight years, most days I do as much as I can to avoid focusing on it. Because, to be honest, when I focus on it I often find myself getting depressed. I know I shouldn't. I know I should focus on the progress I've made in those 8 years since my diagnosis. I know I should celebrate the fact that I am no longer bedridden, or that I can walk without the assistance of a cane now. But, thinking about how far I've come in the past 8 years also makes me think about where I was 9, 10 or even 20 years ago. And then I mourn the loss of my late 20's and early 30's to this horrible disease. I mourn the fact that I never achieved my goal of having two children because Lyme stole my ability to reproduce without serious risk to my child (then I sacrificed my uterus because the Lyme was slowly and painfully destroying it anyway). I mourn the fact that many days I don't have the energy to devote to being a mother to my one child. I mourn the fact that my undiagnosed Lyme was passed on to that one child and the fact that as a result of his congenital Lyme he developed an Autism Spectrum Disorder.
Then I feel guilty, because I know that the best advocates are those that know personally the horror of living with a particular disease.
Then I get overwhelmed by all the mourning and the guilt that I give up and try to distract myself with something else so I don't need to focus on it anymore.
But I just can't do that this May. I have let the Lyme world invade my world. I know many people in the "Lyme community" that are facebook friends with each and every person they ever meet that has or may have or did have Lyme Disease. For those that are severely ill and homebound it is a lifeline. I've never been an active part of that community, like I said, it's easier to try to avoid it. But this May my mother is visiting. My mother is an active member of the Lyme community. So I actually read a few of the links she posted. Then I shared a few links that others in the Lyme community posted.
Now when I go on Facebook my wall is flooded with "Lymies".
This is partly due to the fact that this past weekend I joined several hundred of them in Washington, DC for a rally. The goals of the rally were two fold. 1) to have a place for the Lyme community to gather and support one another and 2) to provide an avenue to educate the public about the existence of chronic Lyme and the challenges those of us with chronic Lyme (and co-infections) face on a day to day basis. The majority of the day was spent with patients and doctors sharing their stories (I even spoke briefly). Stories included successes, various treatment plans and therapies, and of course challenges. Among those challenges discussed was, of course, the fact that the Infectious Disease Society of America (IDSA) rejects the very existence of chronic Lyme and, because of this, most insurance companies follow their guidelines which means long-term antibiotic treatment is denied to patients. This, in spite of the fact that Lyme literate doctors (LLMD's), particularly those belonging to the International Lyme and Associated Diseases Society (ILADS) know that two weeks of antibiotics is not enough to prevent chronic infection.
But I digress...
The rally ended with a little march around the White House to help spread awareness even more. This of course was no easy task since the "little" trip was several blocks and for many with chronic Lyme, that's not "little" at all, particularly those who were hobbling with canes or pushing a wheelchair. But we did it. We walked through DC chanting about wanting a cure. We held our signs (high, when our arms could stand it). We handed out pamphlets to anyone who would take one. We did our best to raise awareness. And we all decided that if it saved one person from developing a chronic case of Lyme disease it was well worth it.
I am not going to spend a lot of time in this blog writing about the controversies surrounding chronic Lyme disease and its diagnosis and treatments. There are others who have done this already. I just wanted to take a moment to give a shout out to all the "Lyme Warriors" here in the USA and around the world who have joined together this month to help raise awareness. Keep fighting friends. The road is difficult, the battle is long... but we're in this thing together.
