Posts Tagged ‘video’

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!

17 Months Lost – Or 17 Months Closer

// October 7th, 2010 // 2 Comments » // Eric's Blog

The last 2 weeks have been absolutely miserable in my little Lyme world.  While fighting Lyme, I’m also dealing with 2 pesky co-infections that keep rearing their ugly heads and turning my world upside down.  In fact the past few months have been really bad.  To be honest I think I’ve kept myself in denial about how bad they’ve been.  Any of you suffering with Lyme will understand that sometimes we have no choice but to block it out.

I remember my mother comparing the “bad days” to childbirth.  Once it’s over, you can’t remember how truly agonizing it was.  Until the next time it happens again, then it kind of takes your breath away when you remember just how awful it was.

So the first backslide was Bartonella.  A major flare up we got under control right away.  Still treating that, but for the most part it seems to be behaving.  But then Babesia came back, and the treatment for that made me so sick I couldn’t believe it.  It was a short course of medicine this time, but I’m just not bouncing back.  I talked to my Lyme Dr this week, he’s doing some tests to see if there are some other things going on keeping me down.  But I’ve just gone downhill every day this week.

Until today, when it felt like I hit rock bottom.  I’ll save you the juicy details, but let’s just say fish oil is gross enough going in…but when it comes back out, suddenly, and through your nose, it turns out to be one of the grossest experiences I’ve had with Lyme.  I wasn’t really sure I was gonna make it through today, but so far I’ve made it to 9pm, so I have high hopes to make it through the rest of the night.  I’m counting on a beautiful tomorrow, it’s the only hope I have because another day like today just might do me in.

In the middle of all this I realized today is my 18 month sickerversary.  But then I redid my calculations and realized it’s only 17 months.  It was 17 months ago today that I woke up too sick to go to work.  20 years of misdiagnosed problems, things Dr’s couldn’t figure out but would either just go away on their own, or else they’d tell me I had to live with it, all come to a head on that morning.  I have been sick since.  I managed to work half days here and there for 2 months from that date, until I was finally so disabled by Lyme disease and it’s co-infections I haven’t been able to work since.

It was 5 weeks after that morning I woke up so sick I was finally diagnosed with Lyme disease.  An acute case that would be easily treated.  My Dr told me I’d feel better in a few days.  I called work and told them the good news and prepared to be “better” by the weekend.

But I didn’t get better.  I got worse.  I have been treated for Lyme disease for 16 months, with a total of 7 days “off” of any form of treatment in that time.  I lost pretty much everything I had, ending with me having to move home in January as I began IV treatment.

I’ve been treated by a LLMD (Lyme Literate MD) for almost a year now.  It has cost over $50,000 out of pocket in that time, with no end in sight.  My family and friends will stop at nothing though to make sure I get the treatment I need to get back any portion of my life.  Without them I wouldn’t be here, for several reasons.  Beyond the treatment itself has been the support I’ve received.  On the days I can’t fight for myself, I fight for those who love and support me.  On the days I don’t have the power in me to keep fighting, I draw on the power and support of my loved ones.

There’s a books worth of things I’m thankful for.  Things I’ve learned to appreciate because of almost losing them completely.  This morning I woke up and read of another suicide of someone with Lyme.  I think this is the 5th one I’ve heard of in recent months.  Along with that story I heard someone say that most deaths related to Lyme disease are caused by suicide.  I don’t know how true that is, or if there’s any science backing that up, but it wouldn’t surprise me.  With Lyme there is no end.  Some people feel better after 3 years of treatment.  Some are 7, 8 or 9 years into it and still having to manage the disease on a daily basis.  Some have been in bed for years, and have no hope of getting out of bed.  Living with Lyme is brutal.  You’re not given a certain amount of time left to live, and you’re not given much hope for a time frame for recovery.  There are many days that death seems like the best medicine.  But we don’t give up, we keep fighting.  My heart breaks for those who felt they had no other choice but to end it.  It goes out to the families and friends of those people for their tremendous loss.

I join the thousands of other people who’ve been trapped in this “Bermuda Triangle” of illness.  I’m not the first.  I won’t be the last.  My day to day struggles are nothing in comparison to what others are going through.  I’m still relatively “new” to this disease and all it entails.  And yet, it has still robbed me of the past 17 months, not to mention the past 20 years of problems it caused without anyone knowing it.

Chances are I’m not even halfway through the treatment I need just to get back a portion of the life I once had.  My days of thinking I’d feel “better in a few days” are long gone.  I know I’m going to have to manage this for life, but getting to that point is a dark and lonely journey.

But I, like the thousands of you out there, will keep plugging along.  There is hope…no matter how dark things seem in the depths of treatment and illness.  I’m thankful to my Lyme friends for the encouragement and hope they give me, and to my family and friends for the support and love they give me.  That along with the right medicines and supplements will get me to where I need to be.  I am one who believes everything happens for a reason, and this is no different.  While I still struggle daily with some of those reasons, I know I am where I am at this moment in life because it is where I am meant to be.

I wish my mind were clearer to properly convey my thoughts, but I hope that on this 17 month sickerversary, on a day that I’m suffering worse than I have in many, many months, that I could share some of my thoughts and let you all know I’m still here, and still fighting with everything I have.  Today I’m fighting minute by minute…I know good days will be upon me again, where I’ll be able to see the bigger picture and the fight from day to day, week to week, and eventually month to month.  I thank you all for your support, love, prayers and laughter.  I no longer fight for myself, I fight for all of us.  I am not alone.  You are not alone.  No matter how dark this minute may feel, remember we all have hope in the next minute…and then the one after that, until eventually we’ve made it.

We will make it, no matter how ugly the journey getting there may be, we will make it.  Never give up hope.

There’s Hope ~Candice, with some help from India.Arie

// July 11th, 2010 // 1 Comment » // Candice's Corner

“from the back country of Brazil
I met a young brother that made me feel
that I could accomplish anything
you see just like me he wanted to sing
he had no windows and no doors
he lived a simple life and was extremely poor
on top of all of that he had no eye-sight
but that didn’t keep him from seeing the light”

As a 21 year old girl who always had high hopes and big goals, who worked hard for everything she was and had, I sometimes find myself feeling like a caged bird. I get antsy, impatient, restless, and down about the conditions of my life and my body. This doesn’t happen too frequently, but is usually triggered by a step backwards or an extra hurdle thrown into my path. Something momentarily steps in front of me in the long tunnel I’m traveling down and blocks the light that I can usually see shining at the end.

I’m sure it’s completely natural for someone to feel this way, especially if they’ve been unable to set foot outside of their house for months, or if for years each day’s been filled with an array of suffering or physical hardship. Yet, after I allow myself to be down for a little while, I then open my eyes to realize that I am in fact blessed, and this is not a cage that I am residing in. During this brief season in my life, I’m wrapped in a cocoon. During this season, I’m fighting a battle, yet I’m also learning lessons that not many are fortunate enough to learn in their entire lifetime. You see, when you are cocooned as I am, you must learn to find happiness and satisfaction in the small things that exist in your parameters. You must blind yourself to all that is passing by outside, and focus on what’s going on inside. You must find joy in celebrating small triumphs, and be filled with gratitude for occurrences that may seem miniscule to those who live in a world less confined. After learning these challenging yet invaluable lessons, and allowing them to transform and change who you used to be, you’ll find that within your cocoon you’ve become someone new. I know that one day, when I’m strong and healthy enough, I’ll be able to venture outside of my cocoon and will emerge as a new, enlightened version of myself, the person who I was meant to be. Almost as though a butterfly would.

Not much will seem hard after this. Nothing will be as earth-shattering as this. Everything will be a blessing. The small things will be beautiful. The big things will be incredible. Every day will be bright. Nothing, not one thing, will be taken for granted. If I can go to sleep at night confident that I will wake up in the morning, and awaken the next day feeling healthy and free of pain, able to walk, breathe and stand on my own two feet, then each and every day will be a good day.

Though I will have had to suffer immensely to get there, I feel blessed to be able to live a life as rich as this. Not many have had experiences in their lifetime that truly open their eyes in this way. For most, what they have is never enough, and nearly all of what they have is taken for granted. Not many people can wake up smiling just because for that very moment they can breathe, or because that very day may be a day that they are able to rise from bed. Me, I’m grateful. I’m optimistic, I can see the light at the end of the tunnel, and I have hope.

“back when I had a little
I thought that I needed a lot
a little was overrated
but a lot was a little too complicated
see, zero didn’t satisfy me
a million didn’t make me happy
that’s when I learned the lesson
that it’s all about your perception
hey, are you a pauper or a superstar
so you act, so you feel, so you are
it ain’t about the size of your car
it’s about the size of the faith in your heart”

Original Post with Embedded Video

Interview with Candice Accola on Lyme Disease

// June 16th, 2010 // No Comments » // Uncategorized

Candice Accola, one of our angels from the PSA’s, and from the show The Vampire Diaries, speaks with Liol magazine (who also interviewed our very own Ashley van Tol) on Lyme disease, her part in the PSA’s and her friend Teri.  She also mentions Teri’s mother Helen, who many of you on Facebook know and who has shared some of her Lyme poetry on LymeBites. 

Check out her interview…and thanks again to Candice for taking a stand for Lyme disease and for her friend Teri.

@TVD_Chloe to the Rescue!

// June 9th, 2010 // No Comments » // Fundraising for Lymies, Lyme PSA, Lymenaide Awareness Campaign

@TVD_Chloe

@TVD_Chloe

I have been making a lot of new friends online lately who surprisingly, don’t have Lyme disease. Seriously for the past year everyone I have met, I have met because we both have Lyme. I know you all know exactly what I am talking about.

Now I am meeting people, still because of Lyme, but not because they have Lyme. These people want to help Lymenaide with our awareness campaigns because they believe out cause is a good cause.

One of my best new friends is Chloe. Chloe didn’t know anything about Lyme until this May. Well, that isn’t entirely true. She knew that you could get Lyme from a tick.

Chloe’s eyes were opened to Lyme disease because of out Paint May Lyme Green Campaign. She found out about Lymenaide through Candice Accola and the other Vampire Diaries cast members who stared in our Lyme disease PSAs.

She was a huge help this May, tweeting and re-tweeting to her followers about Lyme disease. She wanted to do all she could to help spread Lyme disease awareness. May is over, but Chloe is still devoted to helping us with our cause.

For the next week (June 8 – June 15) Chloe is donating $.05 to Lymenaide for every new follower she gets on twitter! If you tweet, follow @TVD_Chloe! If you don’t tweet, sign up today! There is a great community of Lyme tweeters and our supporters there.

Chloe is determined to use her voice in the V.D. (Vampire Diaries) community to spread Lyme disease awareness and to help our cause.

From Chloe-

Thank you for what you are doing with Lymenaide. I hope my contribution of $.05 a follower for the next week will influence people to follow in my footsteps. I really just want to help at least one person to be diagnosed, or who has no idea what Lyme is. Thanks again! :-)

From Chloe about the Lyme PSAs-

I think every single one of them gives an EXCELLENT message. They are all informative and easy to understand. The people that have never heard of Lyme disease that watch the PSA’s will be dumbfounded. The little facts in each one are absolutely unbelievable to most people. It’s a very strong and powerful message and I applaud you for bringing Lyme disease out of the dark. I found out about Lyme because of Lymenaide.

Check out this video montage Chloe made of our PSAs and posted on her YouTube Channel-
CLICK HERE

Chloe’s Links-

Videos: Chloe’s YouTube Channel – Vampire Diaries Vlogs
Website: Chloe’s Blog – www.ohmysalvatore.com
Twitter: Chloe on twitter @TVD_Chloe

THANKS CHLOE!!!