Archive for September, 2010

Eric’s Midnight “10 Thoughts On Lyme Disease”

// September 21st, 2010 // 2 Comments » // Eric's Blog

I’m busy working on finishing my “Sabbatical Series” but keep getting distracted by my thoughts today on Lyme.  Because it’s midnight, and I should have been in bed half hour ago, I will not try to make this a smooth flowing post.  Prepare for a list.

1.  I miss the 50′s.  The good old days, when nobody knew anything about medicine and they just prescribed things that are all illegal now.  Overall, when I think back on the 50′s I can’t help but think it was a happier, healthier time for us all.  The good old days, when women could smoke in the delivery room.  Then again, I wasn’t born until the 70′s so I’m basing all this info on old sitcoms and the Ya-Ya Sisterhood movie.

2.  When IS it okay to be negative with Lyme?  At what point do you give in so much you become nothing more than a sponge-like vegetable?  Sponge like because with Lyme it seems we can’t fight anything in our bodies and Lyme causes every bad thing to happen in our body.  Vegetable because at some point you give in so much there’s nothing left to do but sit in bed and rot.

3.  I’m tired of being nice.  I believe in the golden rule, but if I were some of the people I come in contact with I’d agree that I deserve to have the golden rule broken.

4.  I’ve come to the realization that while I’ve been sick I’ve seen at least 1000 rerun episodes of the Golden Girls, and the entire series of Family Guy at least 3 times, and I don’t own either of these shows on DVD.

5.  16 months into treatment, I don’t see a light at the end of the tunnel.  But due to light sensitivity caused by Lyme I’m wearing large sunglasses, so I’ll probably miss the light and end up in the wrong tunnel.

6.  I haven’t had my own home in almost 8 months.  I’m lucky to have family to take me in, but I’d like to walk around naked again without worry.

7.  I’m getting to the point where I have to cancel plans, or RSVP with a NO for an event because it interferes with my medicine schedule and I just don’t have the energy to pack everything along with me to attend said event.

8.  I’m also getting to the point where I need at least 36 hours in each day to fit in all my meds, supplements, IV’s and vitamins.

9.  My sabbatical was supposed to be a week of finding myself, making sense of my Lyme disease, and a plan for the future.  Instead upon my return I feel even less like myself, more confused by my Lyme disease and at a total loss for the future.

10.  FINALLY, my antibiotic induced hemorrhoids have come to an end.  At least for the past 24 hours…dare I hope for 48 hours?  That’s right, 16 months of antibiotics will do a number on you.  I know I’m not the only one, and like my nurse said today “someone has to be the one to say it first, so everyone else knows it’s okay and they’re not alone”.  So yes, hemorrhoids have been a problem for me.  For those of you wondering why I won’t sit, or sit in a weird position when I’m with you…now you know why.

Okay, I can go to bed now.  May all your days be hemorrhoid free.

Lymenaide Holiday Bazaar!!!!

// September 21st, 2010 // No Comments » // LymeBites Blog, Lymenaide Awareness Campaign, www.lymenaide.com

Very exciting news from Team Lymenaide today as we announce our upcoming virtual Holiday Bazaar!!

Check out Lymenaide now to read all about the Lymenaide Holiday Bazaar!!!

Sabbatical – Day 1 (post-technical difficulties)

// September 20th, 2010 // No Comments » // Eric's Blog

(This post was half written on the first day of my sabbatical, but as you’ll read the week didn’t turn out the way I had planned, so the days are not in order, and this is being posted a week after most of it was written.)

The plan is to arrive by 11am at my sabbatical location. An hour later my Aunt and Uncle are heading off on their vacation, and I become King of the house. Let me introduce you to the cast of this week.

I’m Eric. I’ll be your host, and main character.

Alfie. He’s a cat. The cat who goes outside and catches things like snakes. As a kitten we thought he may have been part bobcat. He had to be tranquilized as a kitten because he was so wild. Now he’s adorable, though a killer…but he likes to rub against me and let me pet him.

Lucy 2. She is not my Lucy, she is my Aunt’s Lucy and also a cat, named after I had already had my own Lucy, so she became Lucy 2. Lucy is a bit skittish, much like my own. In fact they are a lot alike. Lucy sometimes likes me, but lately is afraid of me. Often when I’m there I hold Lucy while my Aunt cuts her nails, so I think she expects a nail cutting is coming every time she sees me. I hope after a day or two she’ll be cuddly and happy with me.

Other than that there are the deer, bears, and other wild animals that are all outside looking in the windows at me. Or at least that’s how I see it. I’m preparing for my journey now. I’ve done nothing to pack or prepare. But I have a Dr’s appt back home tomorrow, so I can finish packing then. Just need enough to get through tonight, and then I’ll be back at the house tomorrow.

This week has a lot going on. It’s a week of solitude, but I have a lot of plans for the week. For one my mother’s birthday is this week. I won’t go into detail about that because that is going to be deserving of it’s own installment in my Sabbatical series.

So welcome to Day 1 of my sabbatical.

Okay, so I’ve officially arrived.  I was rushing like crazy to arrive at the appointed time, hoping not to make my Aunt and Uncle late for their departure.  I knew I’d be back home the next day for a Dr’s appt, so just packed what I needed for one night and ran out the door.  Just before I was to leave, my friend called because she had just broken a glass, cut herself pretty bad, was sitting on the floor surrounded by blood trying not to be sick from it and hoping there wasn’t glass in her finger.  I ran over, and luckily it wasn’t as bad as it could have been.  We washed her up and wrapped her finger and off I went.

Luckily, neither my Aunt or Uncle were ready when I arrived, so time was not an issue.  They finished packing, gave me directions and headed off.  I unpacked and prepared for a nap.  You see, since moving out of the city I cannot nap.  You’d think living here in suburbia napping would be easy, but it’s not.  I think with so much noise in Albany I was so used to it I could sleep through anything.  Here I can tell what song the neighbor’s kid is listening to from my bed.  Being up in the mountains just had to mean I’d finally be able to take a real nap.  But just as they were leaving the house it began to thunder, and then it poured.  It was a quick storm, and the sun came out.  I was sitting in the living room when I saw steam rolling off the sun room roof.  Then it went from rolling steam, to flowing smoke.  Instead of lessening, it was getting thicker.  It was then I thought “Son of a (expletive), they’re not even out of the county and I’ve set the house on fire????”  I ran outside to look, and it was just steam.  So day 1:  Mountains – 1, Eric – 0.

I laid down after a while only to realize that this particular day happened to also be the day they were repaving the highway near their house.  So as I laid there all I heard was the “beep beep beep” of construction vehicles backing up, backed up traffic and nonstop noise from big trucks.

So much for a nap.  Alfie was out, construction had stopped and what happened?  I FELL ASLEEP.  Woke up as it was getting dark, panicking about the cat being out.  He was waiting outside like a good boy and I prepared to really start my sabbatical.

Before my nap though I had time to sit out on the back porch and watch the hummingbirds feeding.  While watching one I saw it fly over and perch on a tree.  It was then I realized in my 37 years I had never seen a hummingbird that wasn’t “humming”.  Sitting on the tree, without it’s wings whipping I realized hummingbirds are just another bird, boring and not that exciting to look at.

Life lesson learned from day 1 of sabbatical?  Sometimes the less we know about things in life the better.  Until that afternoon I thought hummingbirds were amazing, now to me they’re just birds with ADHD.

Sabbatical – Day 6

// September 18th, 2010 // No Comments » // Eric's Blog

It’s a little after 9pm, I’ve got Mamma Mia in the DVD player, along with some appetizer type stuff in line.  I am exhausted.  By all the fresh mountain air I think.  Either that, or without the use of social media I’ve had to spend the entire week with myself and in my own head.  Let me tell you, things are a little interesting in there to say the least.  But enough about me, let’s talk about me.

Today some friends from home (my home before I moved home, AKA Albany) made the trek out here to join me for a day of some mountain fun.  We went into town and had a delicious lunch, took a ride to the local ski center and took lots of pictures.  Rode around to see some of the changing leaves, then came back here and had a leisurely afternoon before they had to leave.

I was thrilled for their visit, however it was also a tough day to pull off.  Let me tell you why.  I know it’s weird, but every time I herx on this current round of treatment I’m on, it begins early Friday morning, normally around 2am.  So 2 nights ago I could feel it coming, and like clockwork around 2am the beginnings of a herx were there.  It was a rough night, but not in any way anything like some of the bad ones.  The cat had me up early, but I was able to nap.  But as last night progressed I could feel it coming on again, and last night was bad.  At some point in the night I was searching for some Ben Gay.  I found some other cream, just hoping anything would give some relief to the pain and nerve sensations throughout my arms and legs.  That seemed to work, and I went off to sleep.  For 3 hours.  It was then Alfie came yelling in my ear and scratching on the bed, letting me know it’s the weekend and he knows it, and needs to get outside and attend to his affairs (AKA killing birds for me to clean up).  I let him out, laid back down for an hour and got up to greet my friends.

I have really felt better this week, it’s either not being on Facebook or the mountain air, but during the day even while herxing I didn’t feel too bad.  I had a great time with my friends, but after a few hours I crashed.  In fact, by the time they left I barely remember what was happening.  Those of you with Lyme know you reach a point where you are saturated with stimulation.  With little sleep, herxing, and all that went on today I think my body just sort of shut down before the sun went down.

At the time they were leaving and I was shutting down my Mom called, somewhere on her way back from Manhattan to ask if I knew why the Thruway was closed, and she was driving around somewhere down there trying to find her way home.  I also then suddenly developed diarrhea.  So my friends are leaving, my body is shutting down, except for my stomach which was evacuating, my Mother is lost somewhere on this side of Manhattan and the cats need to be fed.  I took care of things in order of importance, until I gathered myself together a little again.  I found out a bad accident had the road closed, called Mom who was by then on her way around the accident and back on the road towards home.  My friend called to let me know they arrived home.  The cats ate.  My stomach is better, and now here we are ready to watch Mamma Mia.

But you know what?  I am exhausted, and in a lot of pain.  And I didn’t do all that much today.  But it felt wonderful being out in the beautiful sun, up on the mountains, with some of my closest friends.  I laughed so hard today that I almost peed myself.  I hope my friend doesn’t mind me telling this story, but one picture I have for yesterday’s post (I can’t load any pics onto website, so I have to finish the posts with pictures in them after I return home tomorrow) is a white horse.  In the post I’m going to say “I think I found a Unicorn”.  When I showed my friend’s the picture today and said I found a Unicorn, my one friend said “but we don’t have Unicorns around here, do we?”  I thought it was a joke.  It wasn’t.  I’m in tears laughing so hard at it now.  This is why I love my friends, you just never know what you’re going to find out that one of them thinks Unicorns are real!  Please know, this was not the first time I was laughing through tears gasping for breath today.  I won’t go into details, but when I talked to my Mom (on her way TO Manhattan) she told me a story about her night, and a 911 call she had to make during the night thanks to my cat Penny (the one who is smarter than I am…or wait, is it smarter than me?)  It took me about a half hour to process that, and when I did, I could not stop laughing.  For a brief moment I thought I would literally die from laughter (well it would say lack of oxygen on the death certificate) because I could not breathe.  And of all the times not to have cell service, when I had such a great story to text to everyone!

But needless to say…I laughed a lot today.

But the short time of feeling normal took quite a toll on my body and my mind.  No matter how far away from Lyme I step to try and live some sort of life, it always snaps me right back.  I had to really fight myself tonight when I wanted to feel bad that no matter what I am always reminded I have Lyme disease and am sick.  I looked at pictures, thought about Unicorns, and remembered all the good moments from today when I felt like myself for a little while.

That’s what living with Lyme is like.  I fight, I move forward, but I never get away from it.  On a daily basis we get the chance to make the decision to be annoyed at the limitations, or be thankful for the moments in between limitations.  So tonight, at the end of my sabbatical, that’s what I’ve come up with through this week of being with myself.  From here on out I’m going to fight for moments in between limitations.  Because that’s all they are.  Limitations.  It doesn’t make things impossible, because there are plenty of moments we can still do in between the things that hold us back.  Today I would have done a somersault, but I was too afraid of ticks (and that I’d possibly rupture, tear or pull something).  But those moments are all we have sometimes…so try focusing on them, it helps make the reality of it all suck just a little bit less.

Sabbatical – Day 5 Prequel

// September 18th, 2010 // No Comments » // Eric's Blog

It’s late at night on day 5 of my sabbatical, and I’m feeling like I can take on the world.  I just had a brilliant idea…however, I was so engrossed in watching TV I forgot to make a note of it.  (The sad thing is I was watching a rerun of Chelsea, yet rerun or not she still sucks me in to here every word, Chelsea Handler if you’re reading this I love you.)  I hope it comes back to me, because it was really good.

Just a few notes on what my Lyme has been like this week.  It’s actually been good.  I was due for my 3 good days (as referred to in a previous post where I discuss my reverse PMS) and I have to say since Day 1 of my sabbatical I’ve felt pretty good.  I did have an episode last night, which usually comes before a herx.  I can feel it now, but I think I took enough Benadryl to fight it tonight.  My body is ready to go back into cyst busting mode, but doesn’t realize we’re not doing another cycle now.  Gotta deal with Babesia rearing it’s ugly head again (that’s all part of day 2′s post, which I haven’t written yet, in case you haven’t caught on to the fact that I’m all out of order).

I’m glad the timing of my good days is coinciding with my “staycation” and housesitting duties (he he….I said doody).  Tomorrow some of my closest friends are making the trek up here so I can take them out to see the area, where my family came from, the pretty leaves and have something yummy to eat.

So back to Lyme?  I’m lucking out with some good days, regardless of the episode last night.  And I’ve slept wonderfully, my stress and anxiety levels are much lower, I’ve been able to nap every day (more on that on day 1′s post which still isn’t written), and I’ve been in full relaxation.  I hate to say it, but being away from Facebook and Twitter has really been good for me.  There are times I stare at the laptop like “what the heck do I do now?”, and then I get up and do something else.  It’s amazing how much time I really spend on social media.  Don’t get me wrong, I love it…and it’s my lifeline while being sick.  But I have to say, this week…it’s been good.

I miss everyone from social media, but I think this is the best thing I’ve done for myself, and my sickness in a long time.  I’m feeling refreshed, and feeling happy almost.  I’m making some more sense of all of this.  Why I’m sick, what it all means, and what is next.  But isn’t that what a sabbatical is for?

Oh, and so far no bears or snakes.  But at night I sit on the porch and can hear an owl hooting.  It’s pretty cool.

So far so good, 5 days into sabbatical.  Again, this is the prequel to day 5 adventures, which includes a photo blog as I visited all my family origins in the area, as well as family living and dead (cemetery, I didn’t have a seance or anything).

Hope you are well and fighting the good fight, I promised my Great Aunt today I won’t give up if she won’t.  I think we have a deal.