May is Lyme Disease Awareness month. If you’ve not yet seen it, please view UNDER OUR SKIN. This documentary shows the truth about Lyme disease. See it, recommend it, pass along your copy! You can also view the public service announcements linked to our website. Very informative. And we are still taking Messages of Hope. To submit yours, please contact firstname.lastname@example.org.
Posts Tagged ‘Lyme Disease Awareness Month – May’
I need to start by apologizing for the kick off of my month of awareness by a few days. As luck would have it, my computer went to live on a farm upstate with other laptops where it will be happy and able to run around freely instead of being in bed with me every day. That left with me without a computer for a couple of weeks, and not a lot I could get done with just my iPhone.
Just letting everyone know that I finally have replaced Ace, my beloved laptop as of today. Tomorrow I have some stuff to post about Lyme Disease Awareness Month, different events that are taking place as well as sites where you can find more information.
On my treatment side of things, it appears I now have a blood clot in my PICC line, so I also have an appointment at the hospital tomorrow an hour away. I’m going to use the first week of Lyme Awareness Month as a trampoline to propel me into the rest of the month. But as I work through the joys of life and Lyme, getting back online and getting my PICC line working again, I will also be releasing lots of great information on the month of May, as well as some personal thoughts as I approach my 2 year sickerversary and the beginning of the nightmare that has been the last 2 years.
But in the nightmare of this experience some truly beautiful and amazing things have come out of it. I want to share what the last 2 years has done to me, my family and friends in an honest manner, to help raise awareness about the devastation this disease can cause. But I also want to point out that I believe everything happens for a reason, and during the last 2 years I’ve had the opportunity to find some light in all the darkness that goes with this disease. That light has come in the form of miracles, blessings, people and understanding.
Have no fear, I may be a few days slow getting started but it is Lyme Disease Awareness Month and I plan on doing all I can to raise awareness.
I look forward to this month, to the awareness that will be raised and hearing the stories of what so many of you are doing to help in the cause this month.
Let’s get green and tell people!! Remember, it’s more than educating…it’s saving lives.
Most of you out there with Lyme disease, or who have heard me complain through the last year of my own Lyme disease are probably thinking “is he having a stroke, or did he really just say that?” No, I am not having a stroke. But I am having a stroke of genius. Okay, not so much genius as at least an idea.
Alyssa Knapp of Food For Lyme wrote an amazing piece tonight on the end of Lyme Disease Awareness Month. Part of what has been mentioned in the comments to that article is how many new friends we’ve made through this Lyme awareness campaign.
As much as I hate my Lyme disease, I can’t imagine my life without some of the people that have entered it through the Lyme disease portal. I never would have been able to meet so many people from all over the world, let alone half the people in my own neighborhood that I’ve met through this campaign.
And let me tell you, there are some pretty damn amazing people that have worked hard on this campaign, and it is truly a blessing to know them, and to have worked with them. But more than that, the hundreds and thousands of people who have joined us in spreading awareness. Most I’ve never met in person, but I love them and depend on them as if they were friends for years. Part of this disease is isolation. You cannot begin to understand the isolation someone with Lyme disease feels. Especially without the support of their own family and friends. So to be able to come together as a group like this, and feel unending support and understanding of what we go through can be pretty powerful.
So yet another silver lining to the dark cloud that is Lyme disease. The wonderful people who become part of the community that help to brighten our often dark journeys.
Alyssa will be guest writing this weekend and including the post I referenced, so please be sure to come back and check it out. It will bring a tear to your eye and pride to your heart at all that we’ve been able to and how we’ve grown as a community.
(Reposting this, originally posted on April 19th…less than a week until this public free screening of the Lyme documentary with Q&A with Lyme expert Dr. Steven Bock. Please tell people in the area and help get the word out to save a life this Lyme Disease Awareness Month!)
On Wednesday May 19th, 2010 at 6pm there will be a public viewing of the film ‘Under Our Skin’ held at the Church of Jesus Christ of Latter Day Saints on Fording Place Road in Lake Katrine NY. Map for LDS church in Lake Katrine
Immediately after the viewing Dr. Steven Bock of the Rhinebeck Health Center will be speaking and answering questions. Dr. Steven Bock Bio
Hello everyone, and welcome to my first official post of my second official year of being debilitated by Lyme disease. Some people reading this may be people who I don’t talk to regularly, or that aren’t aware of the details of my journey with this disease. I’m sure there are people who think “is he STILL out of work?” “Why isn’t he better yet?”
Believe me…I think the same questions, usually on a daily basis. But for whatever reason, my journey with Lyme disease continues. It was one year ago last week that I woke up sick, and I’ve been sick ever since. I was diagnosed with Lyme disease in June of last year, and then in October when I finally saw an LLMD (Lyme Literate Medical Doctor) I was diagnosed with Chronic Lyme Disease, as well as the co-infections Babesia and Bartonella.
When initially diagnosed I was given 21 days of medicine and told I would feel better in a few days. But I didn’t feel better in a few days, I felt worse. I thought I was going to die to be more specific. My friends began to scramble for who got which DVD’s and CD’s as I told them I was sure I was going to die.
But I didn’t. I was told there was nothing else that could be done when I was not better in 3 weeks. I knew that could not be right. That is the day I had to become my own advocate for my health as far as Lyme disease was concerned. I had to do a lot of research, and was shocked and horrified at what I learned. A broken system that had somehow allowed a disease to run rampant, without proper testing, diagnosis or treatment.
I’m an intelligent person, though at times Lyme disease robs my mind from me. But I can distinguish logic from nonsense, and that’s how I began the journey to fight a broken system, and a broken body.
I began with a Lyme specialist last October, and have been with him ever since. None of this is covered by health insurance, so I lost my home in Albany and had to move in with family while I began IV antibiotic treatment to fight this disease which had taken over my body. I had my appointment with him last week, ironically on the anniversary of the day I became sick, AKA my sickerversary.
About 2 or 3 weeks ago I had a break in my nerve pain. The one thing that just seemed to always be flaring, and at full force. I would say at least the last 2 years I have had this constant nerve pain. It of course became much worse over the year before my diagnosis due to a series of steroid injections into my back. I was assured this would cure the arthritis that had settled into my back due to an old injury. Nobody every considered the fact that Lyme disease was the culprit of years of back pain, not an old injury. So by the time I became incapacitated by this disease last year the nerve pain was at an all time high, and each day it only seemed to get worse.
I take a plethora of medications and supplements to fight this nerve pain. Thanks to a team of dedicated and knowledgeable doctors I have been able to manage to live with the pain I had, at times reducing it, but never alleviating it. Suddenly I no longer felt this pain. It didn’t last all day, at times it was just a few hours, other times it was a while longer. But in all my body has been through in the last year the nerve pain has been the one thing that has been my biggest obstacle. Everything else I feel I can manage and find a way to live with, but the nerve pain was mind numbing.
So I discussed this with my LLMD at my recent appointment. In an attempt to not get my hopes up too high I haven’t been very vocal about this latest development. I feel bad setting my friends and family up for disappointment when any improvement I may feel turns out to be temporary.
But when at my appointment last week I was told the break in nerve pain was huge, I decided it’s safe to get excited about it now. Because it does mean progress.
And progress is what it all comes down to. Right now current guidelines for treating Lyme disease state that 2-4 weeks of antibiotics will cure most cases of Lyme disease. Anything you’re left with after that 2-4 week course of medicine is what you are left with for life, or else it’s purely psychological and just pain caused by daily living. It doesn’t take a scientist, a doctor, or even someone with a triple digit IQ to figure out that doest not make sense. In this day and time with all we can do with medicine and alternative healing, I refuse to accept being told this is not real, or that there’s nothing that can be done.
I sit before you writing this as living proof that those guidelines are flawed. They are not only flawed, they are causing thousands of lives to come to a screeching halt with misinformation about a disease you can fight. 365 days later I am so much better than I was. I have such a long way to go, but the important part is I’m on the right path.
One year ago I could barely walk, barely think, barely dress myself and get to work for a few hours a day. My body was going downhill so rapidly I was in a panicked state at what was going on. I slept every day after returning home from work, until I could no longer go to work at all. I lost periods of time in my memory. I don’t remember much of Christmas, or anything that happened around it. The list goes on and on.
Last week I did 2 radio interviews, attended a screening of Under Our Skin with Dr. Bock speaking, celebrated my birthday, spoke at a support group, made 2 trips to Albany and celebated Mother’s Day. I won’t lie and say I wasn’t exhausted when the week was over, actually to the point of uncontrollable twitching and muscle pain. But I rested and recovered and am back on the Lyme Disease Awareness horse (there really isn’t a horse involved, in case you’re about to call PETA). A year ago I couldn’t have pulled off half of that. I understand I can’t do that every week, because I would send myself right into relapse. But my body is slowly learning how to work right again, after 20 or more years of it slowly declining while the Lyme bugs moved in and set up camp throughout every part of my body.
Do not let anyone tell you about your health, it’s your health. You have to be your own advocate, especially when faced with something like Lyme disease. You need to be making the decisions about your care, and then find the appropriate professionals that can help you. Nobody can tell you that you will never get better. And they certainly can’t tell you Lyme disease is a simple cure. There are thousands of us who are living proof of that. While some catch the disease early and treat it appropriately and have no further problems, they are the exceptions, not the norm. Our medical system has allowed us to think differently. This is why Painting May Lyme Green is so important, because it is up to those of us who suffer so needlessly to get the word out about the truth behind this disease. Everybody in my world has been affected by this disease, but more importantly none of them have been able to remain in ignorance about this disease either.
So yes, I am getting better. I will be back. I may not be the same person I was a year ago, but I will be a better and improved version of him. One that has reclaimed his life from Lyme disease. While I know the struggles ahead are large and looming, I also know what I can pull off as an individual and am no longer afraid of the unknown. I welcome it, and the oppoturnity to grow and become myself again as this disease is erradicated.
Join me in celebrating one year of my treatment done and out of the way. Join me in praying that the next year will bring even more healing. Join me in standing up with the thousands of others this month as we Paint May Lyme Green, and tell our stories so the world can know the truth about Lyme disease.