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Cracking At The Seams

by Eric Rutulante  •  August 18th, 2010  •  10 Comments »  •  Eric's Blog

My Twitter hashtag this morning is #NoEndInSight.  That sums up my feelings today.  I try to approach this disease with as much finesse and charm as I can.  I believe somehow maybe I can charm the little suckers out of my body with a good smile.  Please note:  This not an acceptable form of Lyme disease treatment, but it was at least worth a shot.

I can’t begin to tell you how sick I am of this shitty disease.  Every day for almost 16 months now my entire life has revolved around Lyme disease.  I have been treating Lyme disease now for over 15 months.  Anytime I start to feel like this I immediately feel guilty because I’m still “new” to this.  How sad and disappointing is that?  To have put so much time and effort into it to know you’re probably not even halfway there yet?

I know people who have fought this disease 20 or more years.  Yes, I’ve had it that long, but without knowing it.  I guess ignorance really is bliss.  While my body was suffering and I was going from one unexplained health problem to another, I at least wasn’t this sick.  I had no idea what I would have ahead of me.  Do I want to go back in time and undo all the work I’ve put into this?  No.  But do I want to go forward in time and do this anymore?  Abso-freaking-lutely not.

My patience has worn thin.  With everything.  What my life has turned in to, my daily schedule, the diarrhea for the first few hours every day because of so many antibiotics I’ve taken, the cost of this disease, the toll it’s all taking on my family and friends, the loss of the enjoyment of life.  I don’t know when, but at some point Lyme took all the enjoyment out of life and turned it all into one big chore.  I hate chores.  You can “rename” my favorite thing in the world and call it a chore and I will no longer want anything to do with it.  That’s just me.

My life has now become a chore.  I’m going through the motions, and I no longer have the energy to pretend.  The tone of this post is negative, I will gladly admit this.  But it doesn’t change the fact that it’s how I feel, and it’s how many of you feel day after day.

If I had had any idea 16 months ago what I was in for, I don’t know I would have accepted it.  It has been a horrifying experience.  Yeah, there’s always good along with the bad, but if you want to read about that then you’ll have to go read a different post.  This post is about honesty.

Lyme bites.  It’s not just a cute name for a website, it’s the truth.  It all sucks.  I don’t know if I’ll ever get better, and that is an awful realization.  There are people who beat it, or who gain a good portion of their life back and then learn to manage the disease.  There are also others who treat and treat and treat but just never get better.  I will have no idea where in that spectrum I will fall until it happens.  That means every day is a giant question mark.  It’s disconcerting to live with such uncertainty day by day, hour by hour, minute by minute.

I’ll pull myself together again with time and get back on the train.  (The getting back on the horse analogy is getting old after 16 months, today I’ve decided to get back on the train…don’t question me, just go along with me…it’s much easier and will hurt your brain less.)  But I’m exhausted from the fight, and can’t seem to get any rest or relief.

Today I go back on one of the medicines to attack the antibiotic cysts throughout my body.  So I feel awful, mentally and physically, and am about to start another round of treatment that is going to make me feel…yup, you guessed it…awfuller.  I didn’t think that was a real word, but it cleared spell check…who knew!?

So forgive me for letting my guard down, for dropping my armor and exposing myself to the realities of this disease.  But there are days that just seem too much to bear, and today is one of them.

I am one of thousands, possibly millions (if you figure all the misdiagnosed cases) that go through this on a daily basis.  Keep in mind I’m one of the ones who for the most part keeps a sunny disposition (as long as you don’t ask my Mom) and a positive outlook.  Doesn’t matter how strong you are, this disease can get the best of you.

I still have about 14 pills to take, and then I have to jump back into the disability process with the next round of phone calls and questions to answer and have answered.  I can’t even begin to fathom having to keep this up another year, let alone 2 more years, or 3 more years…or the rest of my life.  But I don’t have much of a choice, do I?

So back onto that train I go…heading into the direction of the unknown, hoping it doesn’t derail along the way.  Don’t feel sorry for me, that’s not what I want.  Do something to educate yourself about Lyme disease.  Do something to educate someone else about Lyme disease.  Since my diagnosis I have had 4 friends and 1 family member get diagnosed with Lyme, with 2 more family members that have tested positive for it.  That’s 7 people in my inner circle who found out because of how sick I became.  Don’t let yourself be a statistic.  This is real, it’s everywhere (every state, every country), and it’s being grossly ignored and mistreated by the medical system.

This is the reality of Lyme disease.  Take the extra 5 minutes to check yourself when you come in for ticks.  My friend says she now knows where every single mole is on each of her children’s bodies, because of what she’s seen me go through.  That’s all I ask, take care of yourself and each other.  There is no cure for Lyme disease, there is only treatment.  The risk is too great to not take action to protect yourself.  I’ll get on fine, and continue my journey as best I can alongside the thousands and thousands of others who feel like this on a daily basis.  But perhaps you don’t have to, let’s keep it that way.

For more information about Lyme disease please visit Learn About Lyme.

It’s Like Christmas Eve, Only Instead Of Santa Coming It’s Charity

by Eric Rutulante  •  August 12th, 2010  •  4 Comments »  •  Eric's Blog, Fundraising for Lymies

This is the eve of the second benefit fundraiser that my friends and coworkers have put together for me.  The first one was in October, I remember little of the night, it was 2 weeks before my first visit with a Lyme specialist and I wasn’t in too good of shape.  I do remember it being a beautiful night, surrounded by my friends and family…all the people that help make my world special.  The amount raised was within $100 of the cost of my first appointment with the Lyme Dr (which many of you know can reach well into the thousands of dollars before the first visit is done).

At that point in time we thought I would be starting with this Lyme specialist, and sooner than later be “well” again and back to work.  It’s been 10 months since then, and here I lay…still in bed, still too sick to work, still fighting against Lyme disease and it’s co-infections.  Never did any of us think it would take this long, or be such a rough journey as it has been.  But 10 months later I am still here, and fighting harder than ever to beat this.

The opportunity to be treated by a specialist who is one of the best is definitely a blessing.  The cost however, is not.  I’ve struggled a lot in the last year with that issue.  It’s worth every penny to get the care I need and see someone who can properly treat me, but the never ending guilt I feel at becoming a “charity case” still tugs at my pride on a daily basis.  I have to remind myself on a regular basis that everything before me is opportunity, and that if I can’t get out of bed to do something, then I’m no use to anyone, including myself.

I feel guilty for all the people who can’t see a Lyme literate MD.  For those who can’t afford to travel to the few places where a Lyme treating Dr can be found.  For those who can’t work and have families to support, so they can’t even consider treatment an option.  For those who don’t even have the option of seeing someone that can help them.

That’s when I have to step away from the guilt and remember my purpose.  I made a conscious decision this year to play an active role in Lyme disease awareness and activism.  There are many reasons I made that choice.  The biggest reason was because I had so much negative energy in me and my life, all because of Lyme.  I was angry at what Lyme was doing to my life.  I was angry at what I was seeing it do to so many other lives.  I was rotting away laying in my bed day after day with no purpose.

Months later most of you know of my involvement in the Lymenaide awareness campaign, and the various projects we have done and are still doing.  There are days I cannot focus or work through the pain to do all that I want to do.  But I do what I can when I can.  I have to remember that my goal to heal and be well again is not just for me, it’s for all the others who aren’t afforded the opportunities I have been.  The ability to be treated and fight this hideous disease gives me an opportunity to be well again so I can put all my energy into helping others avoid the loss that comes with Lyme disease.  It’s not an easy thing for me to accept donations and gifts from people knowing there are so many who are worse off than me.  But it is an easy thing for me to really be involved in helping those people, to giving them a voice.

So I sit here the night before the benefit with very mixed feelings.  I’m humbled by the love and support of the people in my life.  The organizers of this event and all those who are contributing to make it a success.  I rarely feel worthy of such love and caring, especially from those who are “strangers” that I’ve never met.  So many of you have offered donations, raffle items etc. to help make the benefit a success.  The power of such support is overwhelming, and another reminder of why it is so important for me to get better.

I’m excited to be surrounded by family and friends, to see those I haven’t seen in a long time and to see the wonderful and amazing things people have sent in.  I’m nervous about being the center of attention when there are times I can barely handle a simple conversation.  I’m honored to have people care so much about me and my healing that they are willing to go to such lengths to help support me on this journey.  But most of all I am determined.  Determined to give back a hundred fold of what I’m given.  Determined to beat Lyme disease.  Determined to follow the purpose in all of this, and all the lessons I’ll learn on my journey with Lyme.  Determined to stop others from taking this same journey.  Determined to help those who need it, those who don’t have the support system I have or the means to get help.  I am determined.

A special thank you to everyone involved in the planning and pulling off of such an endeavor.  There are no words to describe how much it means to me and how much I truly appreciate it all.  I’m fighting for more than just my own life here, I’m fighting to be well enough to help others and make a difference.  Everyone’s role in helping to make that happen is truly appreciated.  Instead of feeling like a charity case, I instead feel the intense love and warmth from all those who fight alongside me, who add their strength to help pull me through to the other side.  I remember how blessed I am to have such love in my life, people that care enough to do all they can to help me beat this.  I thank God that I am in a position to not only get the help I need, but to also help others.

A good time is sure to be had by all.  I will be posting tons of pictures this weekend, and can’t wait to let everyone know how it went.  There are people coming that I’ve never met before, some from several hours away.  It will be a very special experience to meet these people that I’ve built a special bond with through our illnesses.

It still hurts my pride to have no choice but to depend on others in order to just live.  But the happiness I get from such a blessing far outweighs the damaged pride.

Thank you to everyone involved and for all the well wishes.

Disability Is A Sucky Word

by Eric Rutulante  •  August 9th, 2010  •  5 Comments »  •  Eric's Blog

Okay, so the word sucky isn’t exactly a GREAT word either, but it’s mine and I like it.  I set out this afternoon with a real concrete plan.  I had the plan in concrete that wasn’t dry yet, and it seemed people kept walking in my still wet cement which really screwed up my concrete plan.  I’ve since seen that plan go from concrete to Jello.  It’s okay though, I can still do what I need to do, it’s just now things are a bit out of order.  This is what life with Lyme is like…no matter how well you may plan something, your body and mind don’t always cooperate.

So I ended up in the local coffeehouse with my laptop, a Lyme-friendly beverage, both of my notebooks and my headphones (I’ve set a personal goal to listen to music every day, whether I “feel” like it or not….I’ve yet to be disappointed by music no matter how much I tell myself I don’t feel like listening to it.)  I couldn’t find anywhere to plug my laptop in, and it had an almost dead battery, so I sat back the old fashioned way, with a pen, paper and my iPod.  I began to write a couple of things and was getting ready to outline the post I had in mind for tonight when I got stuck on the word disability.  It really is an ugly word.  I probably didn’t think that a couple years ago, now the word makes me cringe.  It brings up ugly feelings inside me.  I’ve come up with a couple  reasons for this.  1) My experience so far has not been “good” with the entire system 2) I still don’t want to admit to myself, or the world, that I am “disabled” – it paints an ugly picture about a person.

I’m feeling beyond overwhelmed today.  The weekend is over.  It’s Monday again – even for the sick and disabled.

I hate the term “disabled” – makes you think of people who are “done” with life.  Maybe one here or there goes on to do something great and it becomes “newsworthy” because you don’t expect that from the disabled.

I absolutely refuse to be “done” with life – you should see the length of my Bucket List!  And I don’t want to be noticed for doing something “against the odds” because I’m disabled.  I want to be noticed for what I do – not what’s wrong me – not to be noticed because it’s a surprise I was able to do something since I am disabled.

The whole process is messy, tedious and annoying.  It certainly distracts from the process of healing.  On days when I’m too sick to work I have to use all my energy trying to prove I’m too sick to do the type of things all day that they are making me spend all day working on to prove I can’t do them.  Confused?  Try making sense of it with the brain fog that so many Lyme sufferers (myself included) have to deal with on a daily basis.

This reminds me, the other day I locked myself IN my car…and started to panic because I couldn’t remember how to get out and I was sure I’d die due to lack of oxygen before they found me, prime example of brain fog, now where were we?  Oh yes, brain fog and disability.  And on that note….back to the next round of disability paperwork.

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.

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.)