Archive for March, 2010

Healing, One Lesson At A Time

// March 30th, 2010 // No Comments » // LymeBites Blog

My thinker appears to be broken.  Well not really broken, as much as sprained.  Maybe it’s the rain, the wind that has been howling through the Hudson Valley all day.  Maybe it’s just too late in the day for my brain to do any more thinking.  Either way what I set out to share with you all tonight has flown out the window in the last gust of wind.  For now, let’s talk about anniversaries. 

Friday was my 12 year anniversary working for the state.  It was odd I realized that the same day I was doing some stuff for disability and retirement.  I always figured if I retired after 12 years it would be because I somehow become a millionaire, not because my body has been infested with corkscrew-like bacteria for the past couple of decades rendering me almost unable to care for myself (if not physically, then financially). 

As I thought about that over the weekend I realized it was 14 years ago this week I moved to Albany.  Bright eyed and bushy tailed from 4 years in Utah and Idaho, I transferred to school up there which is what led me to working for the state.  You know the rest up until the next anniversary, which was 2 months ago when I left Albany to return to Saugerties to move in with my mom as I began IV treatment for my Lyme disease.  After 9 months of fighting this disease through oral antibiotics and other supplements it was time to move on to the big guns, and at the same time I gave up my apartment and it’s expenses to be able to continue to pay for treatment and medicine which was not being covered. 

It struck me as funny how it all came back full circle.  Starting with 14 years ago when I left Saugerties for Albany, to the career I had that kept me there until 2 months ago when I returned for reasons beyond my control (and to be quite honest beyond my ability to comprehend).  It’s more than just an Aerosmith song, full circle really does describe life pretty well. 

So I wonder what circle is being formed with all of this sickness and change going on.  A year ago my life was completely different.  I was pretty sick by that point, but I just didn’t know why.  But it was still a fast paced world where I commuted the 2 miles to work on a city bus, spent my days downtown in shirts and ties laughing with my coworkers, days spent in my cubicle working on budgets and spreadsheets. 

My life could not be any more opposite today than it was 365 days ago.  On my good days I will tell you that being sick with Lyme is really a blessing (on my bad days don’t even ask!)  Throughout the last 11 months one of the only ways to keep my sanity has been to find the good that has come out of being sick.  Some times it’s the littlest of things that I rely on to keep me going.  But as I ponder the anniversaries occurring and the circle that was created by those anniversaries…I can get a little excited finally.  Because this disease is starting a new chapter in my life.  I don’t do well with change.  Plain and simple.  But when I look at the changes in the last 14 years and the circle that just closed, I’m kind of excited to see what’s on the journey in the next circle. 

So while this all sucks royally…and when I say it sucks, I mean it.  This has been beyond anything I could have ever imagined.  But tucked within the layers of hell that I’ve endured in the past 11 months I have found quite a few things to be thankful for, several of which never would have happened without this illness.  Would I have chosen to be sick again if given the choice?  No…I could never knowingly go through that, but I can find some good things in it, and I know I will find many more as I get better and can start to get my life back. 

It helps when you can find some kind of purpose in what’s happening to you, especially when what’s happening to you is a life altering event.  There are days it’s easier to lay in bed and feel sorry for myself, but I know I feel better when I can get out of bed and find a reason to my day.  Day by day as I find reasons I can start to see the bigger reasons.  So today, while I’m frustrated at how slow my recovery feels, I am thankful for the progress I have made overall in the last 11 months.  I have come a long way in that time, and I’m grateful I’m still able to see that the grass is greener on the other side, and I’m beginning to see that soon enough I can get to the other side. 

It has recently occurred to me that perhaps my body is recovering one lesson at a time.

Week 5 Countdown, YOU MATTER – please share

// March 30th, 2010 // No Comments » // Fundraising for Lymies, Links To Other Lyme Site Posts, Lyme PSA, May is Lyme Disease Awareness Month, Paint May Lyme Green, www.lymenaide.com

Press Kit to be sent out to 250 stations cross the country – $550
500g hard drive for recording footage on site - $150
Postage to send out 250 press kits – $688
The impact of a nationwide public service announcement for Lyme disease - Priceless.

*****

If you choose to do nothing, nothing will happen. If you choose to do something, what happens may surprise you.

We are all looking for change in the Lyme world. Freedom for our doctors and our treatments. Accountability from our insurance companies. Understanding from our friends and family. But, nothing comes from nothing. If we want to see change, we have to be that change.

This May we all have the opportunity to do something about Lyme disease. You may think that your small personal contribution would be insignificant, but you are wrong. The few add up to the many and before you know it there is a lot.

A lot of awareness, a lot of questions, a lot of pressure.

There are so many things you can do to be a part of this change.

Nothing you do is insignificant.

Please visit the Paint May Lyme Green campaign page by following this link- http://lymenaide.wordpress .com/paint-may-lyme-green/ Find out what you can do to make a difference in your community.

If you are planning an event or campaign for this May, let us help you promote it. We will add any awareness events and campaigns to our Paint May Lyme Green calendar and campaign. Send Ashley a message at ashvantol@lymenaide.com to have your event added.

The world is a dangerous place, not because of those who do evil, but because of those who look on and do nothing. -Albert Einstein

-Ashley

A Fundraiser: Something For You And Something For Me

// March 29th, 2010 // Comments Off // Fundraising for Lymies, LymeBites Blog

My wonderful friend, Penny Piva, is once again doing a fundraiser called “Eric vs. the Tick”.  20% of all proceeds of orders placed with “Eric vs. the Tick” on them will go towards helping to pay for my treatment and IV medication.  So do you like Mary Kay?  Do you like me?  Then that’s a perfect combination to do something great for us both!  Here’s the info from Penny. 

Anyone who makes

Tick Awareness Trumps Vampire Silliness

// March 29th, 2010 // No Comments » // Fundraising for Lymies, Links To Other Lyme Site Posts, Lyme Media, Lyme PSA, LymeBites Blog, May is Lyme Disease Awareness Month, Paint May Lyme Green, www.lymenaide.com

Before I begin, let me start by saying that I am in no way at all embarrassed or ashamed of the fact that I LOVE the Twilight saga.  It began two years ago on a trip with some family friends.  I had finished the book I was reading, and with nothing left to choose from, was handed the book ‘Twilight’.  Immediately I began criticizing the way the book was written, thinking to myself how I could never finish the book, let alone all 4 books of the saga, until I realized I was halfway through the first book and completely and totally sucked into the story.  Call me old fashioned, but I’m a sucker for a traditional vampire/human love story. 

Needless to say I read all the books, bought the Twilight movie when it came out and watched it many times.  I have been anticipating the release of the second movie of the saga, New Moon, for quite a few weeks.  Again I remind you all (and mostly myself) that I am not ashamed of this.  I pictured myself in line at 12:01 on Saturday morning, the day of the release…me and about 250 twelve year old girls all wanting our very own copy of New Moon. 

That being said I can go on with my article for today, and something that I think is so very important.  While I tend to joke and make laughs out of every day serious situations (including Lyme) in order to try and make some of the bad stuff seem not so bad, but tonight I joke, but the topic I talk about is not at all a joke. 

Unless this is your first time reading my website, or the first time ever hearing about me or knowing me through facebook or Twitter, then you know that I have recently been involved with an awareness campaign called ‘Paint May Lyme Green’.  Since becoming ill last year, and then learning all the pitfalls that a Lyme patient encounters, I began to get involved, or at least WANTING to get involved.  As my treatment works on the diseases that have caused such havoc in my body, and I slowly gain strength back little by little, I am able to be more involved in getting the word out there.  The word is Lyme.  A 4 letter word many people are not willing to say.  Or when they hear it said, immediately turn the other way to avoid it altogether.  I can’t ignore it, because it runs my life.  Literally runs every aspect of my life.  As I’ve fought this fight for over 10 months now, and am now living at home in order to pay for treatment, it is now beginning to run the lives of my mother and family.  My friends are now living it on a daily basis as they support me in my own journey.  It’s a 4 letter word I feel I have no choice but to say. 

So when Ashley from Lymenaide asked me to join her and others in this awareness campaign for May I gladly jumped on board with the others from New York who were working on this.  It was wonderful having someone already organizing so much of this, as my cognitive dysfunction caused by the Lyme would make me think of great ideas, but the roadblock was in execution and where to begin.  Having a group of people already working on it, and joining them to work together helped me be able to be a part of the awareness campaign even with the brain fog and such issues that I still experience. 

Part of this wonderful campaign, and I’ve talked about this before, is putting together a Public Service Announcement (PSA) about Lyme disease.  In order to make this a reality, Ashley and those joining her in the project need to raise $5,000 for the production of the PSA.  Today Lymenaide announced that they had passed the $1,000 mark.  In order for us to meet the deadline for production to get this aired for May 1st to kick off Lyme Awareness Month, we need to raise a lot more money, and do it quickly. 

Then I thought about the fact I haven’t donated anything yet.  I myself am in quite a pickle when it comes down to it financially.  With the lack of insurance covering much, if any, of my treatment and doctor visits, every penny is pretty important.  While my co-workers and friends have had a benefit and fundraisers for me, I wonder to myself how I can donate money to such a worthy cause when I’m trying to make sure I have the $900 necessary to pay for the next 4 weeks of medicine. 

That got me thinking about how many wonderful causes there are, and people who need help in paying for treatment, benefits that are held for Lyme disease patients and their families, and how much I’d love to donate to them all, but the reality is I just can’t when I am trying to pay for my own treatment without bankrupting my entire family.  So I understand the difficult position many Lyme patients are in when faced with being asked to donate to any good cause, even if it’s going towards something that will ultimately be of benefit to you in the long run. 

I feel this way about the donations for the PSA for May’s Lyme awareness.  Yes, I need money myself to pay for my own treatment, so that I as an individual can get better.  But with better Lyme awareness any time in the past 20-30 years, I may have known I had Lyme disease before it got so bad that I could no longer work.  I know there are hundreds and thousands of others across the country right now in the same boat I was in a year or two ago.  A lot of problems, but no answers.  When I got sick and learned how devastating Lyme can really be, I was amazed that I could have lived in such ignorance for so long.  So the awareness is imperative to others in order to save their health, to get treatment before it’s too late to have a full recovery.  That is why this cause is SO extremely important right now.  Beyond that, the more awareness we raise about this devastating disease, as well as the controversy surrounding it, the closer we as the Lyme disease community will get to having proper legislation to protect us financially and medically. 

So while every Lyme patient struggles financially, I think this is a cause we can’t say no to, because the repurcussions of it will have a long lasting effect on many of our own, as well as our loved ones lives. 

And for those who do not have Lyme disease, you have an even better reason to donate.  Because you’re seeing what this can do to a life.  You are seeing what it has done to my life.  You have become aware, and now know how bad Lyme disease can be.  Now that message needs to be passed on to your loved ones so that they become aware and can stop themselves from becoming as sick as so many of us are.  So please, donate whatever you can, but help us get to our needed goal of $5,000 to get this PSA out there for everyone to see. 

Now back to my love of the Twilight saga.  (Eventually I was gonna bring it back around full circle, you just had to stick with me a bit.)  A few months ago, after paying what needed to be paid I had $28 left over one week.  I put that money aside, knowing that in a short while New Moon would be coming out and I would be able to use that money to buy my long awaited second installment of the story of my (no longer) secret obsession. 

So in good faith to all those other Lyme patients (or anyone else) who is suffering financially, and worrying how they are going to take care of themselves, let alone help another cause, I am donating the $28 I had planned on using to buy my silly DVD, because as much as I may enjoy a movie, nothing would make me happier than to have gotten one step closer to stopping someone from experiencing what I have had to experience in the past year. 

So I ask you now to go to the following website and make a donation.  http://lymenaide.wordpress.com/paint-may-lyme-green/psa-donations/  For those of you on facebook, you can also donate through ‘Facebook Causes’ by going to this link.  http://apps.facebook.com/causes/457717/18077474

Thank you so much for taking the time to read this, and your support of this project with whatever donation is possible.  It means so much to myself, as well as the many other Lyme victims out there who need your help to give us a voice.

Not All Education Is Key

// March 27th, 2010 // No Comments » // LymeBites Blog

Today’s education is brought to us by Sue, a family (and personal) friend who has known me since birth.  I have 5 parties and/or celebrations to go to tomorrow.  Obviously on a good day for a person without Lyme this would be tough, but for someone with Lyme it’s just not possible.  While discussing this on facebook, where I must go to discuss everything from what t-shirt I’m wearing to my love of Mexican little people, Sue referred to me as a Lymeolite. 

Sue says a Lymeolite is a socialate with Lyme disease.  But I wonder if it might also be a Lymie with a social disease.  

Consider this today’s education.