Archive for February, 2011

Starting Over – But From A Better Place

// February 28th, 2011 // No Comments » // Eric's Blog

I’ve been thinking about that damn proverbial horse, as I attempt to get back on it once again.  Tonight I realized I’m sick of the proverbial horse, maybe it’s time to get a real horse.  It would make the journey a lot more fun if I could spend my time getting back on a live horse instead of a symbolic one.

So my last post was less than encouraging, but it was exactly how I felt and my honest telling of how I felt about where I was at and where I was going.  I’ve had the weekend to process everything, and begin my new treatment plan.  While I call it a new treatment plan, it’s the same old plan…just making progress towards carrying on.  The truth of it though is that I’m at a place I was exactly one year ago, so in many ways it feels like starting over.  The good thing though is that I already have a year of work out of the way.  Granted, most of that year was spent dealing with co-infections who took over, leaving Lyme in the background.  But it’s time has come again, and now its time to kick some Lyme ass!

The appointment went as I expected, I’m glad I had Mom there and let her take over in making the decisions.  As many of you commented on my last post, I’m lucky I have that option.  I won’t go into all the details of my appt, but I think both my Dr and my mom were pleased with the outcome.  I’m not particularly thrilled with the plan, but that’s why I wasn’t making any decisions.

Starting this past Saturday I began IV treatment again after a 3 week break.  For a few months before that I was only infusing twice a week.  Now we’re starting out at 5 times a week, and returning to my full protocol that I have been doing for the past year…only with things added as we “peel layer after layer” like an onion in finding other problems.

I have full faith and confidence in my Dr, and know that he knows what he is doing.  He hasn’t been wrong yet in 14 months, so I know I’m in good hands as far as treatment.

The one thing he kept pointing out is that I’m a severe case, I have a very active, ongoing infection that is being fought, along with the 20+ years the bacteria had to claim my body as their own.  So the one thing I truly have on my side is time, and I just have to bide my time until I get to the next level of healing and recovery.  He went through my entire chart and showed me how I respond to each of the medicines, the improvements I had along the way right up until the crash began.  Various reasons for the crash, first Bartonella, then Babesia, then my immune system.  Then being off antibiotics gave the bugs a chance to party like it was 1999 all over again.

Starting over is definitely not easy on the spirit or soul.  The important thing is to remember, that I’m not starting over from day 1.  I’m back to a place I want to be in order to be able to properly fight this disease.  Because of such tick borne infections in my body and how long I was sick before diagnosis, it’s going to take a long time, and as long as I continue to respond to the medication, then we know it’s working.  When we get to the point the medication is not working, then we know we’ve made progress and we work on other issues.  But right now we’re concentrating on fighting the bacteria, getting myself back to where I was when I had improvement, and then continuing on from there.

I’d like to be all rosy and happy and say this is all such wonderful news.  But it hasn’t been as easy for me to make peace with it.  But the truth is that it is.  It means maybe another year of hell for me, but I’ve already made it through 20 months of hell…why cant I continue?  Exactly, I can continue, and I will.  I have no choice but to beat this disease.  There are no other options.  It’s not a game I can say I’m bored with and don’t want to play anymore.  This is my life, and tick borne illnesses have taken my life from me.  I have to take it back now.  The few weeks of a break from treatment was not a rest for the weary, but rather an exercise in watching myself get sicker and sicker every day.

So the break I want is not there, it’s not an option.  As my ex used to always tell me “we can rest when we’re dead, for now there is life to live”.  So maybe I won’t get that break, I can take as many breaks as I want when I’m dead, for now I have a life to live…and to do that I have to first get that life back.

So it’s day 3 of returning to my full treatment protocol, including diet and weekly Ondamed treatments.  It means 14 hour days to fit in all the medicines, supplements, mixed drinks etc. that I need in a day.  It means saying no to public functions, get together’s with friends or families…but I’m always too willing to blow off what I need to do for what I want to do.  Now my days revolve around treatment and healing, the rest will fall into place in time.

I’m grateful I have the opportunity to fight and treat this disease, no matter the toll it takes on my body or my mind.  There’s no way I’ll allow the disease to win, no matter how exhausted I might feel from the disease and the treatment, this is round 2 of fighting like hell to get my life back.

Thanks for being part of my journey so far, and I hope you’ll stick around as I chronicle the “rebirth” of my treatment.  Part of my treatment plan is journaling, and I plan on using this as an opportunity to share the journey with my readers.  After a year of doing this, it’s not all new and confusing to me, so I’m prepared to document things as I bounce back from all the setbacks and reset the score in the fight to get my life back.

Struggling For Hope

// February 24th, 2011 // 7 Comments » // Eric's Blog

I’m in the middle of doing a variety of things today.

1.  Recovering from the worst stomach bug (if that’s what it was) I’ve ever had.

2.  Preparing for my appt with my Lyme Dr tomorrow.  (more on that to follow)

3.  Changing sheets, pillowcases etc. now that the worst of the bug is over.

4.  Recovering from taking a showering.  Showering with a PICC line is hard enough, when you have one arm to use, the other in the air, and you are weak and shaky from being sick, it makes taking a shower seem like climbing Mt. Everest.

I told myself earlier that I would do the one thing I had to do today, get bloodwork done, and then return home to rest.  I may not be well enough to make it to the Dr’s appt tomorrow at the rate I’m going.  But I have some thoughts on going to this appt.

I haven’t written much, in fact I’ve purposely been avoiding anything that has to do with Lyme right now.  A year ago I was so gung ho and full of hope…but a year later and I’m actually sicker than I was.

After 20 months, over $50,000 in out of pocket expenses and one living hell after another, I’m quite ready to throw in the proverbial towel.  That is my decision.  I tried to get my PICC line pulled a few weeks ago, but was told I couldn’t until I saw the Dr.

My hope of getting “better” diminishes daily.  People say “but look at me, I’m better after only 3 years!” and you want to say “Yay!”…but then those same people crash, some weekly, some monthly…but they’re not “better”.  They’ve improved, but they’re not better.  Not every case is the same, but my case is pretty bad (though not nearly as bad as others, which I am grateful for every day).  I can’t see spending all this money, to spend years of torture and non stop infliction of pain on myself only to “improve”.  I want my life back, and it’s becoming more and more apparent that will never happen.

So I have to start a new life, and learn how to accept that, which is what I’m now working on.  But I don’t want any more treatment, I don’t want any more pills, I don’t want any more PICC lines…I just want to be left alone, in my bed, drugged up and watching TV or playing on FB.  Unfortunately that’s not an option, for many reasons.

So I made the decision to turn over all medical rights and decisions with the Lyme Dr to my mother.  I know I have a bad attitude, and I don’t care anymore.  I don’t see any hope in my future, I see a rather dull and boring life…I’m neither dull nor boring, and living with Lyme for the rest of my life is a real drag on my soul.  But it’s out of my control, just like all of this is.

I’ve purposely not written much to avoid being negative, but again in the name of honesty I’m sharing where I’m at with my journey.  I no longer think of it as a journey, but as a struggle.

We’re approaching 2 years since I was diagnosed with Lyme disease.  It has been a horrible journey.  I remember when I first got sick and started finding others in the Lyme community someone saying “you don’t start to get better until you hit rock bottom”.  I took a lot of comfort in that for a long time.  But it seems each time I think I’ve hit rock bottom…I find another step off to an even deeper bottom.

I’m searching for hope, because I see my friends and family in the Lyme community also struggling to hang on to their hope.  There’s got to be a way to find it again.

For now, I just try to survive day to day.  I have about 20 pages of notes to put together into a presentation for the Dr tomorrow, and so that my mom is fully up to speed on everything.  From there we move on, whatever decision the Dr and my mother come up with I will go along with, because I feel I have no other choice.  That’s the worst part about this disease, it feels like I no longer have any choices…just a path of hell to continue on.

Empire State Lyme Disease Association – Capital Region Chapter March Support Group

// February 20th, 2011 // 1 Comment » // Support Groups

The Capital District Region Chapter of the Empire State Lyme Disease Association will not be holding a monthly meeting in Guilderland for February. Listed below are dates and times for the next scheduled meeting in our area.

You may also be interested to know that “Under Our Skin”, a Lyme disease documentary is now available on Amazon On Demand for rent or purchase.  It is $3.99 for 48 hours, or $14.99 to buy.  For those with TiVo‘s, and newer TV’s you can do this right from your TV.  Here’s the link for those interested, it’s a great way to get family and friends to see it who haven’t yet had the opportunity: http://www.amazon.com/gp/product/B004I0H71I?ie=UTF8&tag=santaclarit07-20&linkCode=as2&camp=1789&creative=390957&creativeASIN=B004I0H71I

Also, in May, PBS will be broadcasting the film for Lyme disease awareness month.

Empire State Lyme Disease Association

Capital Region Chapter

Support Group Meeting

March 19, 2011

1:00 – 3:00
Guilderland Public Library, 2228 Western Ave., Guilderland, NY 12084

Contact: Barbara - bjmeslda@yahoo.com

For information on the Adirondack Lyme Disease Foundation’s Saratoga Support Groups for February, March and April click here to be taken to their support group info.

Our mission is advocacy, education of the public, education of health care professionals and Lyme and associated disease research.  Empire State is based in Manorville, NY and is active in local, state, and national issues.  There is a desperate need for public awareness of tick-borne illnesses. Our goal is to prevent chronic tick-borne diseases, by education about prevention which includes crucial early diagnosis and by promoting a quality of health care that needs to be provided to patients with both early and chronic tick-borne diseases.
We are dedicated to helping and supporting people suffering from Lyme and associated tick-borne diseases.

Adirondack Lyme Disease Foundation Support Group Schedule (Feb-Apr)

// February 20th, 2011 // 2 Comments » // Support Groups

For those in the Saratoga area, the Adirondack Lyme Disease Foundation has set up the following support group meetings.  There are upcoming meetings in February, March and April.  Here is the information on time and location.

Adirondack Lyme Disease Foundation

Support Group Meetings
February 24, 2011
March 31, 2011
April 28, 2011

Saratoga Springs Public Library – Susman Room – lower level
49 Henry Street, Saratoga Springs, NY
7:00 – 8:30PM

Ulster County Lyme Disease Support Group February Meeting

// February 20th, 2011 // 1 Comment » // 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.

FEBRUARY MEETING OF ULSTER COUNTY LYME DISEASE SUPPORT GROUP

Wednesday February 23rd, 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!!