Archive for March, 2011

Just Another Week With Lyme – With Lyme Weeks Feel Like Years

// March 7th, 2011 // 6 Comments » // Eric's Blog

I’m now in my second week of Treatment – The Sequel.

It’s pretty much what I remember the beginning being like, only without the total shock at how tired I am all the time.  The good thing is this will only last a while before my body is back at it again.

I have to say the hardest part about accepting having to start everything up again, and in many ways I feel like I’m starting “over”, although I know I’m not, is that it feels like the last year brought me full circle to where I started from.  I have to remember all the work that went into the last year.  The fight against the co-infections, getting my immune system back in order, getting out of a no sleep pattern into one where I slept perfectly almost every night.  All of that was progress, and things that will help this round of treatment to work better because of the issue that were addressed and corrected.

Part of the reaction my body is having to the IV meds again is a constant state of brain fog.  At times it’s more like brain fatigue…my brain is just tired.  I had an Ondamed treatment today, one of the programs was to help with the brain fog.  Here’s hoping it helps!  This is my 2nd week back on Ondamed, and that always brought relief, so hoping for a little boost the next couple of days to help me with so much going on.

Each day seems busier than the last.  That’s half the problem of those with Lyme and other chronic illness. In order to “prove” we’re sick, receive the benefits our employment provides, get the public assistance needed to help during your illness etc., we sometimes spend hours on one little thing.  Chasing down a report nobody can find, having to prepare yourself for the next call to someone who holds your future in their hands.  It’s all very daunting when you’re so sick you can only keep one eye open at times, and that’s just to be able to focus on what you’re doing.

That’s kind of how this week is.  Every day is an administrative nightmare.  My Task lists are long each and every day, and full of phone calls.  (I hate talking on the phone.)  Each phone call is one that makes me nervous to make, and with the neurological symptoms I could easily end up sounding like a babbling idiot in any phone call I might make.  It takes a lot of prep time to be able to actually make yourself ready to deal with each of these responsibilities.

It’s a week my body is telling me to REST.  It’s starting up a war again against the disease in my body.  It needs all the help it can get.  But in order to be able to be “sick”, it requires a lot of work.  I have Dr or labwork appointments every day this week.  That alone wipes me out, but then to add to the list all the details that have to be maintained on a daily basis, it gets overwhelming.

So as week two gets underway back in treatment after a short reprieve, I’m more organized then when I first got sick, and have a better idea of what I need to do for my own health.  But to do that requires more work, but that work pays off in the end allowing you to just be sick.  So I’m spending a lot of time this week just trying to find a happy medium for the rest my body needs, and to get the most “work” done in the meantime to keep up with everything.

Not an easy task, but nothing with this disease is.  Our healing depends on what we put into it, so I have to learn to work with that and then make it work.  Just another day in learning to live with, and accept Lyme.

Adding To Resume: Professional Sickness (I’m turning it into a job title)

// March 2nd, 2011 // No Comments » // Eric's Blog

I finally feel like I’m approaching “pro” status in being sick.  Something that has not been easy, and has required a LOT of work and time put into it.  I may be at the bottom of the pro level of being sick, but I think I’ve gotten there.

I was diagnosed in 2009…spent the next 6 months just waiting for the day I would feel better.  They said it would happen within 3 weeks…eventually it had to happen, right?  By the end of those 6 months I was in with a Lyme Literate MD and beginning to delve deeper into my tick borne infections and Chronic Lyme Disease.  At that point he couldn’t say if it would be an easy case or a hard one, just that we would begin treatment and see how I responded.

2009 was my year of sweet innocence.  Then 2010 arrived.  I spent the new year’s eve alone in my apt, sick, watching TV and realizing I had about 30 days to be packed and ready to move back in with Mom.  After 6 months of fighting to keep my home in Albany, while not working and paying for a Lyme Dr, I had no choice but to give up my apt and move in with Mom.  It just happened that the day I began my IV therapy is the same day I moved in.  (Talk about great timing.)

So I moved in with the idea this would be temporary, a few weeks to months until I was “better”, could return to work and get a new apartment and start my new healthy life.  That was 13 months ago.

But that didn’t happen.  The next 10 months or so were spent fighting unexpected complications instead of the Lyme, just to get me back to the place I need to be to fight the Lyme again.  (Yes, that feels discouraging, but I’m so thankful I already have so much of it out of the way, and that this time I’m not going into this blindly, I know what I can expect.)  So now we’re back to a point where we begin again where we were last summer, with treatments we know work.  They may work a little too well as I plan on a lot of rough patches and sickness from the medicine.

But knowing ahead of time what is coming, it makes it easier and less scary because there is no unknown.  At same time, while the unknown is scary, the known can be pretty scary too.

Now that 2011 is here, I’m prepared for this illness.  I don’t have any plan of attack or secret cure to battle it.  But after a year and a half I’ve figured out how things work.  This year I’m organized.  All medical receipts are in one location.  I keep track daily of everything, from the meds I take to a generalized symptom list.  I have a dry erase board up in the kitchen now, so I can make notes.  If I wake up tomorrow with no memory, mom can tell from the board that I have a few refills to be called in and picked up.  In addition, with the new iPhone apps I’m using, I can submit a daily or weekly symptom tracker.  It’s pretty generalized, but shows any changes from day to day.  The developer (who I’ve talked to) has submitted the changes for new version of the app.  Included in an upcoming upgrade will be a comment field.  The symptom info is great but what’s lacking is a narrative to explain any major changes.

I now spend my afternoons with post it notes marking everything as I go through it for the file it will end up in.  I have the filing cabinet all the supplies and many folders already started.  What is lacking is the time and physical strength to go through the piles and put them in the appropriate folder.  Then I think that pile is just the past couple months, I still have all of last year’s paperwork packed in bins waiting to be gone through.  That’s usually when I give in on the whole idea.  But as it’s that time of the year to submit all my 2010 claims to insurance Ive been forced to spend time going through those bins finding what I need.

But this year wil be different.  As I said, I’m approaching pro status in this game of being “sick”.  It took a year and a half of being confused, searching for paperwork I couldn’t find, and wondering why nothing was organized to bring me to this year where I have a system in place.  Right now that includes having 2 notebooks, with several colored pens for color coding my notes with me at all times.  Slowly my phone is replacing those notebooks.  By summer I hope to not have to carry a backpack just to leave the house.

It’s taken a long time to get from the beginning of this post back to my point.  But here it is.  While we all want miraculous recoveries, and to believe the IDSA is right and that 3 weeks of antibiotics will cure us, most of us know better.  For those new to the disease, you are in the state of finding out exactly what the disease can do and what it can take away from you.  I share the truth with you for honesty’s sake.  When I got sick there wasn’t this huge online presence and support.  All I found was conflicting info, and nothing that warned me what I could be up against.  Now we are lucky for the help and support we receive from our “Lyme family”, as well as a plethora of information online to help us make an educated choice.  One of the hardest parts about being diagnosed with this disease is finding out the fight you’re up against.  With the Dr’s, with the insurance companies and most of all with ourselves, as we are left to fight the battle of our lives for our lives.  So honesty in the journey is important, but should not act as a deterrent.  Every Lyme patient will tell you the life lessons they’ve learned from being sick.  The way their priorities have changed, the way they see the world now.  No matter what stage of this disease you are in, it is a learning experience for each of us that struggle.  But we have to pull ourselves out of our own struggling to find the good around us.

So we’re now in the 3rd month of this new year, my 3rd calendar year of ilness.  I’m pleased with my note taking, keeping up my calendar, work towards a proper symptom journal as well as getting so much ready to be filed.  But it gnaws at me daily how much work is involved, and that I should really start moving the important info to a safe place.  2011 will be a year of proper record keeping, balancing checkbooks, documenting everything from every appt and phone call, and the ability to have the info I need at my fingetips when I need it.  But it doesn’t happen on it’s own, so each day I have to motivate myself to make a few steps forward.

It’s a little late to be giving advice to all of you for the new year, but never being a fan of New Years resolutions, this is as good a time as any to make the conscious decision to treat each day of suffering as a blessing from God (or whatever supreme being you believe in).  As you take each day as a new adventure, finding ways to be grateful for the little things and the opportunities afforded us, you’ll eventually see you’ll begin to give more attention to the good and slowly let go of some of the bad.

That is my goal this week (to become a part of my daily ritual).  I challenge each of you struggling so hard right now against this disease to join me.  We are sick, there’s nothing we can do about that.  It has already happened, there’s no going back.  But that doesn’t take away our power to turn an awful experience into something positive.  But that can’t happen until you allow the change to happen from within.

Day 4 – With Music From Horror Film Playing In Background

// March 1st, 2011 // 4 Comments » // Eric's Blog

This is the point in my re-entry into IV-hood (even though it’s only been 3 weeks without it), that I begin to wonder when the herx is coming, or if it will come at all.  If the past is any indication of the future, then it’s coming.  But it’s a guessing game as to when.  I had a treatment today that will make me feel sick for up to 12 hours, then Ill feel much better from it.  So I know I’m in for one of those generally feeling yucky type of nights, but nothing compared to what most of the days have been like recently.

It’s easy to live in fear of that herx.  Or the next flare up.  Or the next night you’ll go without any sleep which will then trigger all your Lyme symptoms the next day.  There are so many things each day to be afraid of.  Whether you’re “newly” sick, in beginning of treatment, midway through, at the end or all done.  Once you’ve gone through the hell of Lyme disease, there’s always the opportunity for fear to sprout into thoughts in your mind.  On your best day, you could spend the entire time wondering how long it’s going to last before you return to your normal feelings of being ill.

What’s sad is on that day when you’ve felt your best, you shouldn’t be wasting those few precious good hours worrying.  Maybe the reason you can’t sleep is because you’re up at night worrying about not being able to sleep, or if you’ll have the energy for what needs to be done the next day.

Instead you should be taking advantage of every minute you feel good.  Some days you may only have an hour that you’ll feel good, or even “better”.  Embrace every minute of that hour while you have it.  We spend so much time in bed, in pain, exhausted and in a nonstop battle for our health…and all that time in bed sick we wish for relief.  Yet when we are given relief, no matter how brief it is, too many of us get stuck in this cycle of thinking and you waste that special time given to you.

The whole of it all comes down to worrying.  Worrying causes fear, or can be caused by fear.  No matter where it comes from, it is vital to find the cause of it and stop it.  When we have those days, or hours or feeling better, it’s a blessing we need to take advantage of.  It may give us the time to spend with loved ones, to do that thing that we keep putting off, or it may be a chance to let our body rest and heal from the work it’s constantly doing.

Never underestimate the power of an hour.  Even one hour of relief from the daily torture Lyme presents can be enough to revitalize our souls, and give us strength to face the next hurdle we have to jump.

But we can’t utilize those moments of relief if we spend them in fear or worry.  What’s going to happen tomorrow is going to happen tomorrow whether we worry about it or not.  Learn to live in the now, so that when those precious moments come along where you can take a breath and have a break from any of your daily symptoms, you are prepared and able to make the most of them.

I take the first step in my own advice today, as I enjoy a couple hours of mild pain, but much less than normal for what I’ve done today.  I know I have a herx from today’s treatment to look forward to tonight, and that somewhere down the road a big herx will happen.  But until it happens, I can’t worry about it…because I’ve been given the blessing of a few hours of slight relief, and I want to take advantage of every single minute of it.

I’m So Happy To Feel Like Such *&%$ Today

// March 1st, 2011 // 3 Comments » // Eric's Blog

I’m so excited about the beginning of aggressive treatment after the recent break from some of the medication and treatments.  I’m not exactly thrilled about the fevers, chills, cramps, pain and reaction as the bacteria dies off, but with each thing that makes me feel horrible I know it means something good is happening.  I don’t know many illnesses where you are thankful to feel worse.

Luckily, I haven’t begun to feel worse yet.  Reintroducing the IV meds to my body has not been a picnic in the park, it’s rough on the body, but the die off of bacteria hasn’t begun yet.  For those not familiar with it, there is a reaction that often happens with Lyme treatment.  Basically when the medicine kills the bacteria in your body, the dead bacteria become neuro toxins which in turn make you sicker than the original bacteria.  When the medicine kills the bugs quicker than your body can process and get rid of the toxins, it makes you really sick.  This is what is referred to as a “herx reaction”.  So when you see me say on Facebook I’m “herxing”, you know what’s going on.  Similar to chemotherapy, the medicine actually has to make you feel worse in order to feel better.

So I’m embracing the beginnings of the ickiness that is ahead.  It’s only just started, and that’s just adjusting to the new daily protocol of medications and supplements.  The die off hasn’t even begun yet, but I know it’s coming…and I’m waiting for it like it’s Christmas morning on a year I’ve been a REALLY good boy!

Maybe this is my psychological way to accept the reality of what’s in store, but when I can’t get out of bed until mid afternoon, and then it’s only because I can no longer wait any longer to pee, and I think the day is wasted and I’m surprised at how much this or that hurts…I embrace it like a ray of warm sunshine, knowing that while I’m feeling the effects on the outside, on the inside there is one hell of a war going on…and I’m winning the battle.  There are no other options.

It’s Tuesday, I’m disabled and don’t get out much.  Other than some good TV shows tonight, not much to help pull me through the day.  Waking up feeling like you haven’t slept in weeks, with all kinds of aches and pains makes a random Tuesday seem even worse.  You can only watch so many reruns of Everybody Loves Raymond before you realize not EVERYONE loves him…

So today basically sucks, it hurts, I feel wiped out, my whole day revolves around adjusting to a new medication schedule, I have treatment and get my dressing changed.  That’s enough to exhaust me and send me to bed for rest of day, but I have to be thankful for the opportunity to get out of the house.  Even in the cold, it feels good to be out and be in the sun.  In between the yucky stuff, I can focus on the warmth of the sun’s rays.

Then take the rest of the day as a blessing as the war inside goes on, knowing that I will be victorious.  So every hour that I suffer or wonder how I’ll survive is just one more battle won in the war, because hour by hour I find the strength I need to pull through the bad stuff, laugh at the good stuff and know that soon it will all be a thing of the past.

How’s your Tuesday going?  I’d like each of you to share something positive from your day today as a comment.  Let’s all focus on the positive today!