Friday, July 13, 2012

A Twist of Lyme...

I think I'm still in shock mode.  I promise in a few days I'll be back to my "normal" writing with new photos of the boys and news from their busy lives.  But right now - all that's on my mind is this Lyme Disease thing.


The tough part, I hope, is over.  The last few months I've been suffering in silence mostly.  The days I didn't write?  Those days I was likely sitting in front of the computer either trying to focus...trying to keep my eyes open...or trying to remember the day.  In the end I said "screw it" and closed the computer.  Hopefully the antibiotics will kick in and I'll start to feel better soon.  I still feel crummy - but at least now I know why.  Today hasn't been a good day - I'm actually writing this from bed.


I want to address a comment that came through (that I did not publish).  Someone kindly told me to give him or her a break.  The 'jist' was:  It's Lyme Disease - don't be so dramatic - take your antibiotics and it will go away.  I've had it - and friends have had it.  Just shut up about it already - you're so dramatic.


Well, for one - it has already been established that I'm dramatic.  It's a requirement in order to have your own blog about your life.  And two - I think I have a very good reason to fear Lyme Disease.  My Dad contracted Lyme in the 80s.  Before then, he was athletic and in shape and healthy.  Lyme practically paralyzed him.  While he went on to recover, I look back and realize that health problems cropped up years later.  Most notably - heart problems and his stroke.  I don't want that for my future so I have been doing tons of research on co-infections since Tuesday (which is very difficult with the brain fog I am dealing with).  I also have a special needs child with neurological issues who could very well have contracted this disease from me - we don't know for sure, but he'll be tested in a few weeks.  The weight of those two things alone has me panicked.


Sometimes a month of antibiotics just doesn't cut it.  I know that's the course of treatment, but I don't want to blindly, robotically follow along and assume that will kill the Lyme.  Different bacteria can enter your body that group together and hide.  I know it sounds crazy - but the Lyme tries to preserve itself in the body using something called "Biofilms" to protect the bacteria from antibiotics.  It could be that my Dad was treated successfully for Lyme...but there were other bacteria like, Borrelia, Babesia, Bartonella or Ehrlichia that were left behind and left untreated.  It's just a theory.  It was the 80s and they didn't know as much then.  Now you can be tested for these bacteria and treated...hopefully taking the issue of developing other medical problems because of the Lyme off the table.


I can't take any chances.  We all know I don't have the best luck.


I was able to get an appointment for this Wednesday to meet with the Infectious Disease doctors at DuPont.  Gavin will be with me.  They are very knowledgeable about Lyme and I'll hopefully get all of my lingering questions answered.  We'll also discuss the possibility of Gavin having it and what we would do if he does.  


I did finally watch that documentary that was recommended.  I hope that some (or all) of you will take the time over the weekend to give it a look.  It will open your eyes - VERY wide.


You can watch it free on Hulu right HERE.


Lyme Disease.  I still can't believe it.  It's definitely a "twist" in my life story that I didn't expect.



11 comments:

  1. I want to address something from your last blog post, "At Least I am Not Crazy". Are you insinuating that if you are depressed that you are crazy or other people are crazy if they suffer from depression? That really bothered me. Also, yes, you tend to be dramatic in my opinion, but it's not something I will shoot you down over. It's probably just your personality. I will still read your blog and pray for your family and I am sorry you have had so much to deal with in a few short years.

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    Replies
    1. Hi...

      That's not at ALL what I meant, I assure you. What I meant was - because how I was feeling came out of nowhere I assumed I must be going through a depression. It never really made sense to me, though, because I didn't "feel" depressed in my heart. But when I found out I was actually suffering from Lyme Disease it all made sense. I knew I wasn't "crazy", so to speak, meaning I knew then it wasn't all in my head. It was just an expression and wasn't a comparison to depression at all. I've suffered from depression in my lifetime and it's no joke.

      However, I have edited the post out of respect. I would never want someone to feel offended intentionally or unintentionally.

      I'm sorry that you feel I am dramatic, but thanks for continuing to read and not "shooting me down" :-)

      Delete
  2. You know, for the life of me I will never understand mean people. If they don't want to read about your life (duh, it is your blog)' delete it. She thinks your dramatic (so what), delete it. I guess she didn't get the childhood lesson of if you can't say something nice... Anyway, I am sorry for jerks, Kate. And from one dramatic person to another, hang in there!

    I am going to watch that video because I am just curious like that. When my Dad was very sick and dying they thought it might be Lyme, so yes, it's a little more that your normal " take 2 and call me" illness. I was dumb and thought you coukd only get it from ticks. I assume that's not the case. But like your Dad, this was in the 80's so maybe that's what they thought.

    Hooe you feel better soon. And for your rude responder-Jist delete her(or him)!

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  3. Kate, I don't think you're being dramatic at all...and if you are...well...you have every right to be! Lyme disease is very serious and hits people in different ways. Having an auto-immune disease myself I know how an illness that is easily taken care of for some people, can cause havoc in my body. You might find acupuncture to be very helpful right now in alleviating some of the symptoms. If nothing else, it will at least bring you some temporary relief from the pain :) You hang in there! Okay? And...if you can...just ignore the creeps out there! I seriously doubt if anyone is holding a gun to their heads and forcing them to follow your blog :)

    Susan

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  4. So glad you're seeing doctors who know their way around Lyme. As I posted in a previous comment, my husband did have Ehrlichia left behind after his Lyme was cleared, and we think that's actually what led to some of his more serious lingering effects (Bells Palsy that never quite cleared, for example.) And you're right -- 1 round of antibiotics may not clear it.

    Make sure you stay OUT of the sun (or cover up well!) that Doxycycline makes you REALLY photo-sensitive.

    And boo to the haters...

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  5. dramatic? Aren't all women a little dramatic? And in my case a LOT dramatic so I can totally relate to you! LOL...

    I agree with Michelle...boo to the haters...go away!

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  6. Dear "Anonymous"
    I have been around Kate and Ed socially and I can tell you with certainty that she would never EVER say something derogatory to hurt someone. She's one of the nicest women you'll ever meet. If I know her, she's probably going to stress about offending you all night. The fact that she went and changed that post should tell you something.
    Because I've been around her, I can picture her saying things that she writes. She has such a great sense of humor which is probably how she deals with all the crap thrown her way. What you (or others) may see as dramatic could be her being sarcastic. She could be going through the worst experience of her life and she'd be making everyone else feel better and more comfortable as they come to comfort her. I'm not alone when I say that many, many, many people admire her for even remaining upright. It's ridiculous how much she and Ed have gone through. I had to write to "defend" her - especially when you put your "dig" in at the end about her being dramatic, but you'd still pray for her anyway. Just that sentence is contradictory.
    Kate in real life is just as sweet and funny and a great Mom as she comes across on this blog. She rarely talks about what's going on with her - she saves it all for the blog. When you talk to her, she makes you feel like it's all about you. She wants to hear all about your life and makes you feel like everything you say is so important. She's extremely humble. And Ed? Well, let's just say that lots of people are jealous of Kate. He's a happy, funny guy that loves his family.
    For the life of me, I'll never understand how people can write mean things to Kate. Especially when she's going through something terrible.

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  7. Yikes, "Anonymous" number two!! Thank you for the nice compliments. I'm hoping you tell me here or in private who you are - I'll be thinking about THAT all night, too!! :-)

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  8. I had a Lyme scare back in the mid 90's. I tested positive. Went through some treatment, only to find out it was probably a false positive. Scary thing is...I had a lot of the symptoms that you had. I could barely walk on some days. It was horrible. Turns out it was a horrific bone spur poking into my spinal column. But when they thought it was Lyme's...there were suddenly a lot of very concerned doctors. That alone told me that Lyme's is not something to be taken lightly. You have every right to be dramatic. It's an occasion that almost begs for it. I hope the antibiotics start working soon and you are feeling better. Unless you have ever been in a position of chronic pain and debilitating fatigue...you have no idea. You could never even imagine. Remember that saying about walking a mile in someone's shoes before you judge them....I bet most people wouldn't get around the block in your shoes Kate.

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  9. What a narrow mindset that commenter must have. How bizarre to expect that someone else should experience things the exact same way the commenter did. Sending you thoughts and prayers for as speedy of a recovery as possible.

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  10. Kate, I hope you will continue to ignore mean spirited people and their comments. If they don't like what you are saying they can stop reading!

    I've never "introduced" myself, and have only commented a few times, but i have been following your story for many years, and alot of the time, i've been dealing with some of the same things as you, or had dealt with those things already.
    You give many of us hope and inspiration to continue on our journeys through life, even when we are thrown HUGE unexpectged curve balls.

    Seems fitting i'm writing today, as it was 2 years ago today that i woke in the hospital on a ventilator myself, with 4 kids at home, who needed me. You gave me daily inspiration to continue my fight then, and continue to do so now, and make me laugh in the process.

    Please know more people wish nothing but the best for you and your family than those who do not.
    Praying you feel better soon!

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