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Hurricane Earl

by Eric Rutulante  •  September 2nd, 2010  •  1 Comment »  •  Eric's Blog

Okay, what does Hurricane Earl have to do with Lyme disease?  Nothing really, though I do wonder what the changes in the pressure as the storm approaches will do to those of us who are so weather-sensitive thanks to Lyme.  It rains and I can barely walk, wonder what will happen with the remnants of a hurricane?  (I say remnants because I live at least 100 miles inland, so the closest we ever get to the actual storm is a lot of rain and wind.)

But ask my friends, or any roommate I’ve ever had, and they will tell you I am fascinated by natural disasters.  You can bet I’ll spend a good portion of the next few days attached to the weather channel and TWC.com monitoring the progress of Hurricane Earl.

My other issue is that since it was time for a male name starting with E for this hurricane, I don’t see why we couldn’t have used Eric instead of Earl.  No offense to any Earl’s out there, but I like Eric much more than Earl.  And if Hurricane Eric was approaching the east coast, it would allow me with a lot more puns, jokes and comments to make about it.  But Earl?  I got nothing.

Okay, now that I’ve completely distracted you with talk of hurricanes let me get back to my original point of this post.

Support.  I’ve been thinking a lot today about support.  Not child support, not life support, but Lyme support.  It never ceases to amaze me how many new “Lymies” are joining our forces every day.  Having such a great online support system is quite amazing, but it also comes at a cost.  Eventually you find that everything you come across has to do with Lyme disease, and you reach a point where you want to NOT talk about it.  You want your life to not revolve around Lyme disease (even though it does).

I’m so grateful that the support I get from the online community is not just about Lyme.  I’ve received text messages from 14 people today.  6 of those people are from the Facebook Lyme community, and I’ve never met them.  The other 8 are people I know in person, and 5 of them have Lyme disease.  Out of the 14 messages I’ve had today, only one even mentioned Lyme disease.

My relationship with many of these “Lymies” has turned into something beyond just Lyme disease.  They’ve become *gasp* friends.  That doesn’t change the fact that the support of this disease is so abundant on Facebook, Twitter and other social media sites.  But it also points out that many of the people in our circle of “support” with time become more than just another name with Lyme disease.

I encourage you all to take full advantage of the support that is out there.  But like anything in life, use your brain and your instincts.  We are just as much a target for people marketing their “cure all’s” or miracle remedy as anyone else with or without an illness.  I don’t trust anyone just because they have Lyme, know someone with Lyme, or have some involvement with the disease.  I trust those that give me a reason to trust them.

So please, take advantage and use the wonderful resources that are out there for us, but also use your brain (which I understand can be hard when Lyme has a hold of it).  I don’t know where I’d be without the friendships I’ve made along this journey with Lyme, through the resources and support available.  Now some of those friends are the ones who make my life so complete in this hurricane of a disease (and I think hurricane is a very appropriate description of what Lyme is like).

And now we’re full circle back to hurricanes.  I’d write more but I gotta get back to the Weather Channel and see what what’s changed in the last 2 hours.

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.

Momenaide

by Eric Rutulante  •  August 11th, 2010  •  5 Comments »  •  Eric's Blog

Today was a very big day in the life of any person who has Lyme disease if they are so lucky to find a Lyme Literate MD (LLMD), the very first appointment.  10 1/2 months ago was my first appt.  I read something my LLMD had written in a book that said how so many of his patients would just cry with relief when they finally saw him because for the first time they were being validated, their disease was real and it was something they could treat.  I was no different.  In fact I think I tend to cry in almost all my appointments with my LLMD.  Some days in relief or excitement, others in frustration and despair.

But today I was the one there for moral support as my Mom had her first appointment with her LLMD (who also happens to be mine).  What kills me is that she tested positive (by CDC standards) almost 2 months ago.  At least 2 of her Dr’s, including the one who ordered the test, have yet to even tell her she has Lyme disease.  (She knew enough to ask for copies of her test results.)  It’s frustrating that even this far in all the gains we have made in Lyme awareness and education, for some Dr’s it still doesn’t even warrant an attempt at addressing it.  If she were not an informed MOLE (Mother Of Lyme Enraged – I just made that up right now, not bad for 12:30am!) then she wouldn’t have known enough to get the test, or ask for the results.  She would have been just another one of us lost in a system that doesn’t pay the attention and respect to this disease that it deserves.

Luckily for her she didn’t go on with life thinking she was fine and was able to treat this proactively, instead of reactively like so many of us have been forced to do.

When I first went to my LLMD appointment I knew very little about the Dr, beyond referrals and info I’d found on the Internet.  I knew nobody who saw this Dr.  It was nervewracking for me, and as any of you who have seen an LLMD know, the costs quickly rise into the thousands before that first appointment ends.  I was blessed because that same day I met someone on a Lyme forum online who not only saw the same Dr as me, but lived pretty close.  10 1/2 months later and she’s a wonderful friend, support and companion on this crazy Lyme journey.

So I can only imagine how my Mom must have felt sitting in that waiting room almost a year ago for 3 1/2 hours wondering what was being done, said and determined while I was with the Dr.  I’m sure she questioned the cost, and what prognosis the Dr would have for me, after seeing me go downhill so rapidly it was hard for anyone to keep up with how sick I got so quickly.  I went from struggling with problems as the Lyme was worsening in my body to being completely debilitated by the disease in a matter of days.

A very wise and wonderful mother once gave me some advice when I eventually found myself a 37 year old man who had lost just about everything, ending up in my mother’s living room, at the mercy of my family to support me as I got the life saving treatment I desperately needed to get my life back, let alone live.  She said a mother is only as happy as her unhappiest child.  My mother exemplifies this statement.  So now I can only imagine what those 3 1/2 hours must been like for her.

For me, I felt anxious, nervous about the prognosis, concerned about the things he’d find or decide about her condition, worried that it would all be overwhelming to her during her 3 1/2 hours upstairs.  And I knew what she was going through, I knew she was in the care of one of the best people possible for Lyme, nothing in the visit was unchartered territory to me.  But yet I spent the 3 1/2 hours full of concern and anxiousness at the results of her visit.

It reinforced once again the notion that the families and loved ones of Lyme go through hell.  Yes, it can’t compare to what may physically be happening to those of us who are sick, but the mental toll on our loved ones is unrelenting.  As I am now a “family member of a Lymie” instead of just a “Lymie”, I can see even more clearly now what I already knew, that the suffering our illnesses causes to our loved ones is beyond understanding for those of us who are so focused on just being sick.

When all was said and done Mom survived her first LLMD appointment (without any tears…that I know of!)  One of my IV nurses came down after about 2 hours and let me know they were taking good care of her.  What she didn’t know was Mom was texting me from upstairs letting me know the same thing.

She’s beginning her journey of treatment now, but the good news is she’s going after the Lyme, instead of the Lyme coming after her.  Thanks to so many of you who sent prayers, good wishes, good karma, kind and healing thoughts her way today.

A year and half ago none of us knew what we were in for when that first Dr mentioned MS as a possible explanation of all my problems.  But here we are now, on the right track and in the exact places where we should be at this very time.  There’s purpose behind everything and this is nothing different.  We now join the ranks of hundreds and hundreds of other families who all battle Lyme at the same time.

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.