LymeBites.com

Learn About Lyme

by Eric Rutulante  •  September 1st, 2010  •  No Comments »  •  LymeBites Blog, Lymenaide Awareness Campaign

Some of you may remember, that in May during our Paint May Lyme Green campaign, one of the things we did was to create a website devoted to Lyme education and resources.  It’s a great one stop site for state by state Lyme info, personal Lyme stories and websites, as well as info about Lyme disease and where to learn more about it.  It’s a great resource and tool for those with Lyme, as well as those who are looking to learn about Lyme, especially those recently diagnosed with Lyme who are new to the world of this disease.

Be sure and check it out, and share with your family and friends.  We are continually updating it with new info as we get it, and our goal is to keep this as a valuable resource for the Lyme community.  We appreciate your support!!

Learn About Lyme Website

An Awesome Giveaway!!! You Gotta Be In It To Win It!

by Eric Rutulante  •  August 26th, 2010  •  2 Comments »  •  LymeBites Blog

Most of you know Ashley van Tol.  She is the founder and creator of Lymenaide, she was the brains behind the ‘Paint May Lyme Green’ campaign, she is a frequent writer here on LymeBites, very active on Facebook and Twitter in raising awareness to Lyme disease, she’s the founder of the Lymenaide Awareness Team, and on top of all that she’s also my friend.  It’s been almost 6 months since I began working with Ashley on different projects, from writing for her website, to working like crazy all through the month of May to get the PSA’s done, to spread our message, and to be involved in Lyme awareness events from coast to coast.  In that 6 months I’ve come to love her like a sister.  She inspires me.  She is always raising the bar.  She is brilliantly creative.  And I don’t think there’s anything she can’t do when she puts her mind to it.

Part of what Ashley loves to do is to help do fundraising projects for not-for-profits.  At this time neither Lymenaide or LymeBites are not-for-profits, so we joined forces with other Lyme organizations in May to raise money to do the PSA’s.  But beyond Lyme Ashley took up a cause in the past few months with the Gulf Spill.  She began working with Nani, another team member and craftivist, and began upcyling projects to raise money to help with the Gulf.  We are kicking off another upcycling project this fall to benefit Lyme disease, and we’re really excited with all she and Nani are doing for that.

Ashley created another persona for her upcycling projects, and you can follow her adventures on her upcycling blog Ash’s Upcycled Blog.

Right now she is in the middle of a very exciting giveaway, where you can choose your own bag!  You can enter as many times as you like, to find out how to enter and read more about it you can check out her post on the project Choose Your Own Bag Giveaway.  I encourage you all to check out her amazing stuff and enter the upcoming giveaway.  Her products are incredible, individual and make a great gift for your wife or girlfriend (for all you guys out there!!!)

You can also follow Ashley’s upcycling on Twitter @upcycledbyash as well as on Facebook at Upcycled By Ash Facebook Page.

Make sure to enter as many times as you can and increase your chance at winning the bag you choose!!

Way to go Ashley on such a great project and on the giveaway.  I already have picked out who I’m going to give it to if I win!

MySpace Doesn’t Feel Like My Space Anymore

by Eric Rutulante  •  August 5th, 2010  •  6 Comments »  •  Eric's Blog, LymeBites Blog

I’ve recently had a picture of me up on Facebook that is pre-Lyme, I chose it on a day I needed to remember being “happy”.  It was me, at a birthday party surrounded by all of my closest friends a few years ago, with a giant smile.  I told people I used to smile all the time, always the life of the party and just full of life.  I needed a reminder of that person as a goal to get back to it.  Everyone LOVED the picture…except for 2 people.  One said I had a creepy serial killer look, the other said it was just cheesy and she couldn’t stand to look at it.  (Please know they both also told me they loved me and it wasn’t personal, and I didn’t take it personal.)  But I had made a promise to keep that picture up for a while so I could be reminded of all the life still inside me, and why I gotta fight like crazy to get back to that person.

So today ended the period of time I had promised to keep it up, and I went looking for a new picture.  Unfortunately, the 400-600 pictures I have on Facebook now all bore me, and I didn’t feel like going through the thousands of pictures that are scattered all over my hard drive to find a new one.  That’s when I remembered MySpace.  Some of you may also remember MySpace, it was what those of us on Facebook all day used to do before Facebook became “cool”.  (Personally I think Facebook is just another tool in Oprah’s arsenal to eventually take over the world, but I’ll save that for another time.)

It took 7 tries to guess the correct password, which shows how long it’s been since I’ve signed on there.  My last post, comment or anything was over a year ago.  I clicked on photos and began searching for the picture I knew I wanted, an inappropriate one of me (of course) giving a certain gesture to the person taking the picture.  I decided this was another good picture to show the real me, just without a smile.

But a funny thing happened….I saw all these pictures I hadn’t remembered seeing before.  Some began to jog my memory, and I’d laugh remembering the good time that preceded that picture, or the friends in the picture who I don’t get to see anymore since becoming sick.  I then got interested remembering that MySpace was “my space” back in the day.  It was the place I could say or do anything, with no fear of offending or being taken the wrong way.  I had complete control over who my “friends” were on there, as well as what parts of my profile could be seen.

I clicked on my first ever blog, and actually had to stop reading I was laughing so hard.  I still have trouble believing it was me that wrote those things, that took those pictures, that left those comments…but I know it was.  Several weeks ago I had a similar round of the memory game when I found about 600 pages of stuff I had written for the book I was working on before I got sick, only I had no memory of ever writing it.  I had planned a post on memory loss after that happened, but apparently I forgot (unless of course I didn’t forget, in which case please remind me).

I was posting on Facebook about the hilariousness I was finding on my MySpace page, and a friend responded about the afternoon pictures I used to text out to all my friends, and how hilarious all my posts were back in the day.  That’s about the same time it hit me…I don’t know who I was anymore.

Part of that is just the fact that the last 15 months have completely turned my life upside down.  Being sick will do that to you.  But more than that is the fact that I’m starting to lose the person I was.  The fun person, the person full of life, the one that made people laugh – AKA the life of the party.

Maybe it’s better not remembering the past at this point in my journey, because it really saddens me.  This disease has taken so much from me – I can’t accept the fact that it’s taking the life from me too.

Now, I have about 600 new Facebook “friends” who will read this and say “but Eric, you are the life of the party”.  For those of you who’ve only known me since I’ve been sick, imagine what I was like when I WASN’T sick.  The decline seems to happen so slowly with our health that we don’t always realize the change is happening.  I suddenly feel the same way about my personality.

I joke that I’m going to be a different person when I’m better, I even suspect that the healthy version of me may actually have a French accent.  I just hope I don’t lose the parts of me that I love to this illness.

Life changes us, so does being sick.  Tonight though, was the first time I could really see how much it’s changed me, and not in the good way.  I want the old me back, I want to be that guy again that always had so much fun in whatever I did.  But I have to remind myself I am where I am right now at this very moment because this is where I’m supposed to be.  It’s not fun, it’s not funny, it’s barely a life.  But it’s what I’ve got to work with and use to fight to get myself back.

My point?  I don’t have one.  I’m just sharing a story, which is just another level on the journey of fighting this horrid disease.  I remind myself daily that I have it pretty good compared to many, which saddens me more because I feel like I’m in a sh*thole of a situation.  I can’t imagine what those others are going through if this is how I feel.

Part of my goal in starting this website is to share my story.  It’s not always pretty, it’s not always funny, sometimes it just is.  That’s all this post is, not to inspire you, not to make you laugh, not to make you feel bad for me.  But to make you know that the effects of this disease are more than just the aches, pains and slow deterioration of your body.  It’s just as brutal on your mind and your life as it is on your body.

On the bright side, with such gaps and loss of memory some days reviewing my life before May of 2009 is like reading a book for the first time.  Some days I’m afraid I’m going to find out I’m really on a reality show and the life I think I lived was not mine at all.  If not for the pictures to prove it I’d be more likely to think I’m being punked.  Unfortunately I’m not, this is my life.  Now the question is…what will I do with it from here?

Stay tuned to find out.

The Wellspring – Lyme Disease Supporters

by Eric Rutulante  •  August 2nd, 2010  •  No Comments »  •  LymeBites Blog, Lymenaide Awareness Campaign

Just A Glimpse…

by Eric Rutulante  •  July 28th, 2010  •  6 Comments »  •  Eric's Blog, LymeBites Blog

…at a day with Lyme when it comes to meds and supplements.  Many of the supplements, herbs, antibiotics, vitamins etc. can’t be taken with each other.  Or they have to be taken within so many hours of each other, or food.  I’ve recently added more things to the mix, all that need to be scheduled.  It has taken me the last hour to plan out the next 24 hours of meds.  I then have to set alarm’s on my iPhone for each one, telling me the time and what to take.  It’s 2am right now, I’m going to bed as soon as I type this up, but I wanted to give just a glimpse at what it’s like to live with this disease, and treat it.  Please note, I actually take less pills than a lot of Lymies do….so remember, this is just an average day in fighting Lyme.

7:00am Alarm goes off for something I have to drink mixed with juice.

10:45am Alarm goes off to make sure I’m awake in order to have the full two hours I need to function in the morning.  It takes a while to get your arms and legs, let alone your head to work.  That mixed with the effects of so many meds on the tummy turns the first 2 hours into basically one long cold splash of water against your fact trying to get moving.  But if I’m not up by 11, I can’t take my next meds at the right time, which then throws off the entire day.

11:30 Alarm goes off for first probiotic.  They are lozenges, and have to be taken 30-45 mins before any food, drink or medication

12:00 Alarm goes off to take daily pills.  This amounts to 29 pills, supplements, vitamins etc.  I cannot eat or drink anything for one hour after taking these meds

1:00 No Alarm, but I can eat and drink finally.

2:00 Alarm goes off for second probiotic of the day, again…nothing to eat or drink for 30-45 mins afterwards

3:00 Alarm goes off for mid day dose of supplements (this only requires 2 pills)

5:00 Alarm goes off to take second dose of med that needs to be mixed with juice (must be home for this, or have cooler with ice and the drink pre-made in it if I am out of the house)

9:00 Alarm goes off to take 3rd and final probiotic of the day, and once again….nothing to eat or drink for 30-45 mins afterwards

10:00 Alarm goes off to begin IV infusion, this lasts for one hour

11:00 Alarm goes off to take night meds.  This consists of 19 pills

12:00am, by this point the nightly meds should kick in and anywhere between then and 2am I will fall asleep

Please note that throughout this crazy schedule you have to factor in Aleve, Advil, pain killers, anxiety medicine and Benadryl…all as needed.  What I end up needing all depends on how the day goes.

It’s brutal to be a “slave to the clock”.  But it’s what we have to do to stay alive, get better, maintain our health.  You always hear how many pills we have to take, and see pictures of them, but now you know what one person’s day is like with his meds and what it requires to do it properly.  You miss one thing and you can mess up the entire day.  I share this with you to give you a glimpse into the world of living with Lyme.  If you have Lyme, you already know all this…but for all you family and friends, here is your glimpse.

If nothing else, use this as another reason to strengthen your resolve to be aware of Lyme disease.  Learn the symptoms.  Check for ticks.  Learn about proper testing.  Save your liver the torture of what it goes through every day when you fight Lyme.

I’d stay on my soapbox a little longer, but as you can see….I have to wake up in less than 5 hours to drink my medicine, though I can go right back to sleep after…it’s a long, tough trip the 20 feet to the fridge and I better get to bed now.

Be well, healthy, cautious and happy.  Live your life, don’t let your life live you.  (Wow, that was deep…where the heck did that come from?  It must be one of those 19 pills I took for bedtime speaking.)