Archive for December, 2010

Oh, Quit Yer Bitchin’

// December 15th, 2010 // No Comments » // Eric's Blog

For starters, I’m saying that to myself, not to you the reader.  For second starters, please forgive my grammar and use of punctuation.  That out of the way, the many of you chomping at the bit at a grammatical (or spelling) error can take a deep breath and relax.

I’ve said many times I’m one of the lucky Lyme victims.  I was sick for a long time before being disabled, but once I became unable to function I had a diagnosis within 5 weeks.  I was treated for 3 weeks (typical response) and when they wouldn’t treat me any longer, a specialist took over understanding the complexity of Lyme.  After a few months the specialist said I probably needed IV and to see a Lyme literate Dr.  I called the LLMD and they had just had a cancellation so I got in 3 weeks later to begin with one of the best (in my opinion) Lyme Dr’s in the world.

Up until becoming disabled I worked for the state of New York.  All my grumbling over the years about state gov’t and having to work for it all went away when all the wonderful benefits kicked in.  I haven’t worked in over a year and a half, yet I still have health insurance, I have other great benefits that are helping me out.  This kept me going until my finances had run dry paying for the non-insured Lyme treatment I desperately needed, at which point I moved back in with my Mom.

It’s been almost a year living her and being on IV medication.  I’ve made it this far.  Point #1.  As rough as it has been, I’m so much better off than so many Lyme victims.  Point #2.  My own self misery at the loss of life I once knew is nothing in comparison for the gratitude I have now for the things I have not lost.  Point #3.

The past few weeks have been truly awful.  Before that it was a few weeks of rough stuff going on.  Before that it was the Babesia crash of 2010.  Before that it was the Bartonella flare of 2010.  Before that it was adjusting to the constant state of herxing I felt while being on IV meds.  My point?  Yeah…it all sucked.  It sucked a lot.  But through all of that, the option of treatment and moving forward was still there.

My case has reached just about $70,000 out of pocket.  And that’s okay.  (As much as it drives me crazy to be blowing through my family’s future day after day.)  While far from rich, my family has the resources to keep me in the treatment I so desperately need.  I know too many people who get so far into treatment, and then the bank accounts dry up and they’re left high and dry, unable to “get better”.

I still have the option to “get better”.  Someone recently asked how I can have the energy to do the things I do in the Lyme community, keep my story honest and written on LymeBites, work with Lymenaide and be as sick as I am.

This post is my answer.  Because I’ve been extraordinarily blessed on my journey.  Others are not so lucky.  I give back what I’ve been given, as best I can with the limitations of this disease.  I come from a long line of giving people with huge hearts.  (Not the engorged kind I’m always afraid the Cardiologist will find on my check up.)  I am who I am because of my nature and the example of those who raised me.  (Not just my mother, my Aunt and Uncle, close family friends etc.)  In a situation like this the clear cut answer to me would always be that being afforded the opportunity I have to fight this and get better would be completely selfish if I didn’t give back some of what I’ve been given.

Yes, some days I’m too sick to keep up with the responsibilities I’ve put upon myself, and I have to accept that.  Yes, there are days I cannot get out of bed but armed with my laptop there’s nothing that can stop me.  There are days I feel better and want to take on the world, only to wake up the next day wondering “what the hell were you thinking yesterday?”

I’m learning as I go along in this journey.  Each day I learn something new about myself, my body and my health.  Today I’ve learned it’s okay to admit defeat when you’ve set high goals for yourself.  This disease has taken so much from me, everything that made me who I am is gone now.  The same person is in my body, but with a new layer of perspective thanks to this disease.  Yes, I bite off more than I can chew on a regular basis, but I’m doing what I can to give back because of how completely and totally blessed I have been to make it this far, and still have hope of making it to the future.

One of my favorite quotes, and also a mantra for how I live my life sums it up:  ”I aimed for the sky, but only reached the mountain tops.  I thank God I didn’t aim for the mountain tops.”

I’m gonna keep reaching for the sky…and I may only make it up one mole hill, but I won’t stop reaching for the sky.  Sick or not. 

Back To Baseline?

// December 14th, 2010 // No Comments » // Eric's Blog

2 years ago if someone mentioned “baseline” I would assume it was work related, referring to a budget term.  Now, baseline is the goal I’ve worked so hard for over the last 6 months.  When my Dr asks how close I am to being back to baseline, I know he’s talking about where I was before I began my gradual decline about 6 months ago.

I was in the process of treating Lyme disease itself, a few months into the IV antibiotics, when I started to have a backslide with symptoms.  At my next appt it was decided I was having a flare up of Bartonella, one of the co-infections transmitted through a tick bite along with the Lyme disease.

Unable to go on another antibiotic at that time we used a natural approach, within 12 hours of beginning the new medication I began to feel better.  This was the 3rd time treating Bartonella.  However it took longer to “bounce back” from the die off caused by the treatment.

But as I worked my way towards recovering from that flare up, the Dr could tell I was having some issues with the other co-infection I have, Babesia (this was also the 3rd time treating this infection).  I was prescribed a medication, and within 3 days of beginning the medication I was having a severe reaction to the die off of the infection.  This was my second herx reaction that I had which concerned the Dr because of the severity of the reaction.

It took almost 9 weeks for me to recover from that episode.  During that time we slowly pulled back on the Lyme treatment, until the Dr decided my immune system was now responding, but it appeared to be hyperactive.  The slightest thing was setting it off to such a degree that I would be sent into the depths of despair which each reaction.  At that point we changed the IV to only twice a week to give my immune system a chance to rest and heal from all it’s been put through.

As I began giving my immune system a break, and continued the work of recovering from the Babesia episode, I began to have little breaks in the horror of each day.  Whether it be less pain, more energy, better mood or just overall sense of wellbeing for short periods of time, I was finally seeing some improvement again.

About this time the PICC line which I had for almost 11 months was due to be replaced because of some problems with it.  I recently had a new one put in after a 2 week break from antibiotics, and feel I am just about back to baseline…the place I was 6 months ago when I was ready and prepared to take on the Lyme infection.  But as is often the case with Lyme disease and co-infections, we have no control over the direction in which our bodies go.

“You have to get worse before you get better” is an all too common mantra for those with Lyme.  At a point when I thought I was “worse” and on my to fighting the battle to get better, I was knocked down a few pegs and reminded that I had more work to do than I expected just to get to the battle.  The last 6 months have been brutal on my body and mind, but I’m slowly pulling out of all of that and ready once again to go after the Lyme.

I feel like my treatment has been just like an onion.  No direct, quick answer for the infections that plague my body.  Just layer after layer, slowly working your way towards the end where you’ve addressed every layer you’ve pulled away.

It’s so hard for family and friends to understand how I can be good one day and sick the next.  Or how I can make progress in some part of my treatment, only to have so much left to fight.  Unless you experience it you really can’t understand it, but I hope following me on my own journey can help to see how easily things can change.  Just when you think you have something figured out or know what road your journey will take you on, everything changes, and you have to be prepared to go with the changes in order to keep peeling those layers off the onion.

My onion is slowly being peeled, it’s taken a long time to get it this far, and it will take a long time before we peel away the last layer.  But the fight continues, as does my story.  I’m ready to be back to baseline and continue where I left off before things got so rough.  I’m back to the beginning, only this time it’s take two.

My Lyme Christmas Message

// December 13th, 2010 // 2 Comments » // Eric's Blog

If you’re a loved one, then you know I do not like Christmas.  Haven’t since I was little.  Sure, I love presents and good food.  But I see nothing wrong with giving gifts and pigging out on some random day in March.  (I don’t hate the message of Christmas, being the birth of Christ, but I hate the season and how crazy everyone becomes.)

Two years ago I almost got into a fist fight with a woman and her one legged father in the parking lot of WalMart right before Christmas.  For a minute I thought my Uncle was going to get a call that me, my Mom and my Aunt had all been arrested for being so full of Christmas spirit.  That’s what Christmas is to me…a giant pain in the buttocks (told you I’ll use any excuse to use that word).

But as hard as I try, I have not achieved world domination or even simple mind control, so the holiday marches on regardless of my personal feelings on it.  Christmas is a sink or swim holiday, and this being my second year facing it being sick, I feel like this year I’m sinking…quickly.

I never do Christmas cards.  This year though, gifts are out of the question (where’s Santa when you need him as a grown up?) so I’ve decided to try and send out Christmas cards.  Because I’m not fan of the holiday, I decided to just tell the recipient of the card why they’ve been important this last year.  It seems like a wonderful idea, until you spend 15 minutes on one card and realize just saying “Happy Holidays” on them all would be MUCH easier.

The reality is people will probably be getting Christmas cards from me up until St. Patrick’s day.  As it is I have 14 thank you cards left to write for the benefit they had for me a couple months ago.

But at this special time of year (whether you like it or not), there is the opportunity for a lot of retrospection.  Last Christmas I was packing up to leave my home in Albany (after 14 years there), to move back in with my Mom,18 years after moving out.  I was waiting to have my PICC line put in to begin intravenous antibiotics to fight my Lyme disease.  I was figuring I’d have to live with my Mom for a few months, before I was better and able to return to work and get my own place again.

So a year later I’m not quite where I hoped I’d be by now, but I’m certainly better off than I was last year.  Sure, this disease has not been following my time table in terms of recovery, but one of the many lessons of this disease is going to be learning patience.

I will look back at this time in life as a “low point”.  Having to live at home, being out of work, the cost of treatment, the time and energy that goes into trying to beat this disease.  But there are so many wonderful “high points” even during the bad times.  As I think about this holiday season I try to remember many of them.

The family and friends who have supported me emotionally, financially and physically over the past year.  The team of doctors, nurses and practitioners that go into my care.  The new “family” I’ve become a part of, those in the Lyme community online who have become so close to me.  The fact I have a place to live through all of this, and family to take care of the bills and pay for my treatment.

So yes, this is my least favorite time of year because of this dreaded holiday.  But no matter how much I may not like the festivity of this time of year, I’m glad for the time it allows to think back on the past year and remember some of the real reasons to be thankful this holiday season.  It goes so much further than just the commercialized version of Christmas.  The last year of being sick has given me opportunity to see the holiday for it’s true meaning, and to try and focus on those things during a season that can be quite difficult for the chronically ill.

‘My Lyme Disease Is Not The IDSA Lyme Disease’ Responses

// December 13th, 2010 // No Comments » // Links To Other Lyme Site Posts, Lyme Media, LymeBites Blog

Last week Ashley wrote her response to the disparaging article written in the Chicago Tribune about Chronic Lyme Disease as well as the doctors who treat with long term antibiotics.  She titled it ‘My Lyme Disease is Not the IDSA Lyme Disease’ and urged us to follow her lead with our own replies.

Later that day I had my own response finished and posted here on LymeBites.  Since that time there have been at least 11 bloggers and patients responding to the article with their Lyme disease versus the IDSA Lyme disease portrayed in this article.  Here’s a list of the responses posted so far.  A truly amazing job by these writers in showing the other side of this disease.

Ashley – My Lyme Disease Is Not The IDSA Lyme Disease
Eric – My Lyme Disease Is Not The IDSA Lyme Disease
Molly – My Lyme Disease Is Not The IDSA Lyme Disease
Andrew – My Lyme Disease Is Not The IDSA Lyme Disease
Kenneth – My Lyme Disease Is Not The IDSA Lyme Disease
Alix – My Lyme Disease Is Not The IDSA Lyme Disease
Brooke – My Lyme Disease Is Not The IDSA Lyme Disease
Kim – My Lyme Disease Is Not The IDSA Lyme Disease
Candice – My Lyme Disease Is Not The IDSA Lyme Disease
Alyson – My Lyme Disease Is Not The IDSA Lyme Disease
Heather – My Lyme Disease Is Not The IDSA Lyme Disease
Kim T – My Lyme Disease Is Not The IDSA Lyme Diseasse
Planet Thrive – My Lyme Disease Is Not The IDSA Lyme Diseasae
Sharon – My Lyme Disease Is Not The IDSA Lyme Disease
Six Goofy Kids – My Lyme Disease Is Not The IDSA Lyme Disease
Marla – My Lyme Disease Is Not The IDSA Lyme Disease
Dawn – My Lyme Disease Is Not The IDSA Lyme Disease
Joanne – My Lyme Disease Is Not The IDSA Lyme Disease
Five Lymies and a Baby – My Lyme Disease Is Not The IDSA Lyme Disease
Jenna – My Lyme Disease Is Not The IDSA Lyme Disease

Ulster County Lyme Disease Support Group December Meeting

// December 12th, 2010 // No Comments » // LymeBites Blog, Support Groups

Hey everyone, just so you know the Ulster County Lyme Disease support group meets every 4th Wednesday at 6:30 at 84 Zena Rd in Kingston (Hudson Valley Sudbury School).  This is the monthly schedule, though I will try to keep the info up to date each month on LymeBites.  For more info please contact March Gallagher, the leader of this support group at march@hvc.rr.com.

DECEMBER MEETING OF ULSTER COUNTY LYME DISEASE SUPPORT GROUP

Wednesday December 22nd, 6:30 pm at the Hudson Valley Sudbury School

84 Zena Road

Kingston, NY 12401

I plan to be there, come and join the rest of us Ulster County Lymies!!