My Writings. My Thoughts.
Hey everyone! The (mid) Ulster County Lyme Disease Support Group for April is this Wednesday April 25th, 2012. Here is the information from March Gallagher, the person who has taken so much of her time for several years to make this group even be available for all those who need it. Also, anyone who is willing or able to help March out with the support group please read her note below.
Hope to see you all there!
Lyme Support Meeting, YES!
There WILL be a Mid-Ulster Lyme Support Meeting this Wednesday
Come and share a tip or fear about tick management.
Hudson Valley Sudbury School
84 Zena Road, Kingston
For more information:
PS: For those who wish to know or haven’t been invited to this group before:
This is not a group in which experts come present information. This is a group of regular people who need to vent about how much lyme sucks and share info.
I started this Ulster County Lyme Support Group in 2008 when I found myself traveling to Northern Dutchess to find support.
We met the 4th Wednesday of every month until the beginning of 2012. Consistency to time and place of meetings is key for support.
I have to work some evenings and this made the pr and running meetings hard to manage, thus I discontinued the group.
Upon numerous requests and in light of the very TICKY spring I am restarting this group.
If there is any assistance you can give the group let me know.
(I originally wrote this in 2010…and shortly after was a guest on a local radio show about Lyme disease and Lyme Disease Awareness Month, and the person doing the show was really impressed with this post and how anyone could “love” anything about this nightmare…but I truly believe there are silver linings in every cloud, and so many wonderful things would not have happened the last 3 years if I had not gotten sick. Would I choose to do it again? I can’t say I would…but I can’t imagine my life now without many of the people that Lyme brought into it, as well the life lessons I’ve learned along the way. Been 2 years so I wanted to repost this and give others an opportunity to think about things that they love about Lyme disease. (Okay…maybe just things you like or are grateful for, but what things came into your life because of this disease that you now count as a blessing? Those are things we wouldn’t have if we weren’t given the opportunity to get sick and through that to grow and learn and become a better person from the experience.) So read what I said 2 years ago about things that could make me love being sick, think about your own journey and share with us what you’re learned to love since getting sick (or if you have a loved one who is sick, what you’ve learned to love as you’ve gone through the journey with your loved one). I hope everyone can find a way to find happiness in everything, in all that is good and bad. This disease is BAD. But there are still some truly amazing things that have happened. I’m working on an update to this post, 2 years later we’ll see what I still love about Lyme disease!) *Also please note, my milkshakes eventually turned into daily functional food shakes as I went off sugar, yeast, dairy, gluten and pretty much everything else…but in the beginning I didn’t realize what an important role diet plays in your recovery
One of the top 5 reasons I hate Lyme disease is because I have heart attack symptoms every day. If I ever actually have a heart attack I won’t know the difference. Now I’m wondering what the other top 4 reasons are that I hate it for. But then I decided there are more than enough reasons to hate Lyme disease, and thousands of places a day that are devoted to the reasons to hate it.
So how about something different?
Can you think of 5 reaons why you LOVE Lyme disease? Okay, okay…stop laughing, I’m serious! I know we’ve all been affected either as a victim of Lyme, or the loved one of someone with it. But the old saying that every cloud has a silver lining is true, so if you really think about it, what about Lyme disease can you find that you LOVE?
For me it’s pretty easy to come up with 5 things:
1. As much as I hate being out of work because I am so sick, it has been kinda nice having the majority of the last year off. Granted at least half that time I was too sick to even be able to enjoy the smallest part of a day, but as I slowly get better there’s more and more I can enjoy about the day while I am still out of work.
2. I have become so much closer with my family and my friends. There are always casualties in the relationship department when chronic illness strikes, but I seem to be blessed with such amazing friends the losses have been limited. However the ones who have stuck by my side have been amazing blessings to me and in supporting me to keep fighting to get better.
3. I have an excuse to always say ‘no’ when people ask me to help them do physical labor. I am 6’4″ and over 250 lbs, most peopl expect a strong man to help them carry things, lift things or move things. Between Lyme disease and my PICC line I always have an excuse to sit back and sip a lemonade while someone else does all the hard work.
4. I love the Lyme disease community. If I had some other awful disease, I think I’d try to sneak over to the Lyme disease side of the party because it is quite an amazingly talented, compassionate and loving group of people. I can’t think of any other group of people I’d want behind me in this struggle then the community with which Lymies have to turn to.
5. Milkshakes. I have had more reasons than ever in the last year to have milkshakes, and to have them without guilt. (Of course this is backfiring at the moment while I’m completely sugar free right now, but it treated me well for a good 11 months or so.) And the truth is, I love milkshakes. So if I’m gonna have to suffer with something like Lyme disease, then I’m glad it’s reason enough to have good milkshakes on a regular basis. (Anyone can have bad milkshakes on a regular basis.)
See how easy that is? So I want to know…what 5 things can you come up with that you love about having Lyme disease? (If you can only come up with 3 or 4 I will not be grading you on this, so that’s okay too.)
The original post can be found here: 5 Things I Love About Lyme Disease April 2010 Post
I’m writing this post just to clear up a lot of questions and concerns and other issues. As is obvious I’ve been too sick for a long time to do anything. In that same time period the organiation Lymenaide which I worked with and was a part of helping to do make Paint May Lyme Green a reality, has become extinct. There is a better word for it…maybe retired?
Lymenaide Final Post is where you can go to read what Ashley has said about her time working with the Lyme community and her plans to move on. It was on honor to work with a great team of people who were very creative, passionate and committed. I hope Ashley finds all she’s looking for and has a wonderful, healthy life ahead of her.
I however am NOT better. I wish I was!!! But I am not. But I’m getting to the point where I can start to be active again. I’ve been under attack with so many emails and questions about Lymenaide going away and what that means for LymeBites and my involvement in the Lyme community. It means nothing.
Lymenaide was a wonderful organization that served it’s purpose and did a lot of good, and interested enough people to “take over” where Lymenaide began. The PSA’s were a major accomplishment, with help from many in getting the celebrities to do the PSA’s to Ashley’s work with her brother in actually filming them. Then the hundreds of volunteers who helped get them to the many TV stations. It was a success. And it was meant for it was meant for, served that purpose, and now that that has happened it is “retired”.
So best of luck to Ashley, as well as Nani and Candice in their endeavors. But I want to let people know that Lymenaide ending does not mean that all 4 of us in the organization are all ending what we have. LymeBites and Lymenaide often crossed over, but the purpose of LymeBites was always different than the purpose of Lymenaide. So the changes do not effect my involvement in Lyme disease awareness, my responsibility to it because I have a voice that can help others, or my commitment to make a difference.
So nothing bad happened. If you read Ashley’s post you’ll see she is very happy and finding her new life. That is wonderful and I hope she finds every happiness in the world. But in the meantime, I am not going anywhere, LymeBites is not going anywhere, and we are about to unveil a new and improved website as well as some great projects that are being worked on as we speak. (Well as soon as I finish this post.)
But with the way people speculate I was hearing horror stories of fights and problems…as if Lymenaide was like Fleetwood Mac without all the cocaine. Nothing like that at all. Just that we served our time and purpose together and that was meant to be, and now we all move forward with what is in store for us next.
I just wanted to put a little post out there to let people know that so they don’t think there was any form of negativity involved in any of the changes, and to let you know while I’ve been silent for a long time, I’ve been fighting like hell for my life and my sanity, so that I could get back to doing what I do best. Run around in circles and hope once in a while I do something right.
Health, happiness and peace to everyone.
I probably should have posted about this BEFORE he did the show on Friday the 13th (really…that’s a good thing) covering Lyme disease. I’m posting about it now because he said he knew it would be a big thing on Facebook and Twitter and the Internet. So let’s prove him right, and thank him first of all for addressing such a tough and controversial issue. And secondly, to ask him to do follow up shows.
If you missed the show, it was aired on the 4/13/12 (in case you want to order the DVD or look for it on other channels). I’m including a link where you can see 4 YouTube clips of the episode, as well as ways to leave messages asking for a couple forms of follow up. If you could take a few minutes out of your day to help me, and the hundreds of thousands of others like me around the world it would mean so much to us, so much more than you can imagine the difference your few minutes can make.
I am copying and pasting this directly from Facebook and at the end will include the link for the Dr. Phil website:
This is a major breakthrough for Lyme Disease Awareness. Please, Please, Please, watch the following … and post on the message boards thanking THE DOCTOR PHIL SHOW and asking for follow up shows!!!!
I don’t know why but that title reminds me of being a child and the fear I’d have when Peter Pan was on TV once a year and I’d hear the tick tock of the watch eaten by the crocodile. (I have to admit, my brain is much worse than it used to be, my dyslexia is at an all time bad, and I’m not sure I have all the facts of Peter Pan right, but I don’t have the time to watch it now, so bare with me as I muddle my way through an attempt at an update.
It’s been over 4 months since my last post. In fact I think my last post was when I hit my 2 1/2 year “sick” mark. (Sick for many, many years before that, but the day I woke up completely disabled and never recovered is my “sick day”.) The 3 year “sickerversary” is coming up, the day after my 39th birthday. Hard to believe when I was 35 I was so sick and told my friend my body just wasn’t right, something was wrong. And now I’m getting ready to turn 39 and am still sick, living in a bed in my mother’s family room, fighting every day to have the physical and mental strength just to get out of bed and do what I have to do just to maintain being sick. Not even considering what needs to be done to heal, to find happiness in a life filled with pain and misery, to find a “home” in someone else’s home, and accept this as my life and my future.
I’ve more or less wiped out a good portion of my friends and family financially. The out of pocket costs so far are in the 6 digits, and I don’t know that I can even safely say I’m “halfway there”. Truth is I don’t think there is ever an ending point, so you can never truly have a halfway point.
That’s what sucks about being sick with Lyme. And I mean really sick. Not the lucky people who see a tick, get it taken care of and properly treated immediately and then are fine. I mean the other majority of us that went for years and years without diagnosis, only to end up so physically disabled by the disease that by the time we found out about it, it was too late.
It sucks. We know that. But what are you going to do with “it sucks”? I stopped going on the FB “news feed” because I was so sick of seeing so many depressing posts. I made a goal to keep my FB page nothing but positive and honest (sometimes honesty isn’t positive, so then I infuse it with humor to take away the bite). But so many people who just don’t accept that life has handed them. (If you’re expecting some kind of “if life hands you Lyme make margaritas” saying here you will be disappointed. Actually, I guess you won’t because I ended up using one anyway.)
I reached a point where I realized this disease took away my life. The life I had. It didn’t take away my ability to live. So yes, I have been “gone” a lot over the last year or longer, and there are many reasons for that. I hope to share some of them with you, as well as my journey to get me back to the point to be able to sit and write again.
Am I going to write I’m filled with hope and happiness and gratitude for an illness that has taken away the life I loved and left me with a life I have to learn to accept, let alone try and like? No. Because I’m not. I’m mad as hell about that, even 3 years later. And maybe will be for the rest of my life. But that anger is fuel, and I need to use it to fuel the right fires. And over the last 2 years, which have been pure hell for me (I never expected how far down bottom could be until I hit rock bottom….and then hit it again….and then once again….and you guessed it, once again), I’ve had to learn to direct the fuel of my anger into the proper channels. And slowly I’m finding a way to accept what life has handed me, be thankful for it, and turn it into something beautiful.
So what are you going to do with “it sucks” in your situation? What can you do to make “it sucks” be okay? Please share you ideas in the comments section to share with others your ideas. And over the next few months, along with some amazing projects and articles that are being worked on, as well as a general overhaul of the website, I will share with you some of my secrets. (Nothing that will keep me from being elected to office in the future, but I think you all have enough on me already to keep that from happening.)
Life is a gift. But that is it. It’s like an empty box. The contents of our life are not just handed to us, we have to create them with what we are given. So help others know how you “create” out of “it sucks”.