Beat the Bite 5 K

 Your friendly Beat the Bite 5K reminder!

Fundraiser for Lyme Disease - I rarely flat out fund raise.  You will rarely hear me ask for money, but today I come to my readers (I know there aren't that many of you, but I ask none-the-less) for help.  I realized today that if all of my friends and family on facebook donated even $1 that I would collect almost $600 and that if each of those friends or family donated a generous $5 that it would be over $2800.  So today, I come to them and to you with my hand held out.

The other day I mentioned the 1st Annual Beat the Bite 5K and 1 Mile Fun Run.  It was right before my beach trip on Sunday when I first heard about this.  A friend of mine (huge advocate in NC) told me about it.  So I contacted the Beat the Bite founders and realized this:  They did not have Lyme Disease.  They created this organization and this 5K for their little sister.  I was blown away.  I invited them (all three sisters) to the beach, but only one was able to attend with such short notice.  I was able to get to know such a sweet woman and feel very blessed to now call her my friend.

This race is happening for two reasons.  The first is to raise awareness for Lyme Disease in North Carolina.  The second is to raise money so that we can continue to raise awareness for Lyme Disease in North Carolina.  On Beat the Bite website, you can register for the 5K or the 1 Mile fun run.  Register for the 5K for $25.00 or register for the 1 mile fun run for $10.  Don't live in the area or won't be able to attend.  That's okay.  You can sponsor someone to walk that otherwise wouldn't be able to do so.  Let me know and I can hook you up with a friend or two or twenty. 

Please help us continue to raise awareness in North Carolina.  Find all the information you need about the organization Beat the Bite & the 5K run at this website:  http://www.beatthebite.com .  If you donate or are going to the walk, let me know!  I'd love to meet you there or simply say thank you for your generosity.  We're trying to make this event HUGE!  So spread the word about Beat the Bite and the 5K Run.

PS.  You will see this post again in October.

PPS.  How am I helping to raise money for TIC-NC other than just participating in the walk?

I'm selling bracelets that say We Fight Lyme Together - Approximately $1.33 per bracelet sold is going straight to TIC-NC.  So far I've sold 64 bracelets! So far I've raised $85.25 for TIC-NC!  You might wonder where the rest is going.  The other approximate 67 cents is going to pay for the bracelet itself.  The reason I say "approximate" is because I'm going to round up or down.  So let's say the 1.33 times 64 is $85.12.  Instead of giving that amount, I'll just go ahead and round up what I give to TIC-NC to $85.25.  In all honesty, I'd probably just round it up to $86 even.  I know in rounding - technically I should round down for $85.12, but I'll never round down when it comes to giving to charity.  I'll just pitch in the extra it needs with the cost of the bracelet money to make it to an amount where there is no change.

I am hoping to be able to make a donation of $100.00 to TIC-NC with bracelet sales on October 14th.  If I sell 11 more bracelets, I will be able to do that.  So $100.00 to TIC-NC is easily doable!

PPS:  While I was finishing up this blog post, I received a message.  Someone wanted to up their order so that I could reach my goal of 75 bracelets.  I now have a new goal of 100 bracelets.

PPPS:  Now I've sold 88 bracelets!  12 more to reach 100 bracelets!

Raising Money for TIC-NC

I've mentioned the 5K walk for Lyme Awareness in a few blog posts now.  I have a group of Lyme friends and several of us (maybe 11 at this point) are going to the walk.  I thought it would be cool if we had something the same - whether it was a t-shirt or a head band or something.  I must have come up with about 20 ideas.  Then I thought about those silicone bracelets.  So I got online to find a place to order them.  I realized quickly that it was almost the same price if I ordered 20 or 100.  Then I realized if I ordered a bunch of them that I could sell them to benefit TIC-NC.  So, I ordered a bunch.  Three hundred to be specific.

I got them in the other day and I took a picture of them, well three of them to be specific.  I posted a picture on Facebook and wouldn't you know in three days I've already had 54 bracelets ordered.    My original goal was to sell 50 in two weeks.  Now I have a new goal.  I think my friends are going to help me reach that goal. If you know me on facebook, get in touch if you're interested in purchasing one of these We Fight Lyme Together bracelets.  They are 100% silicone.  They are lime green & white and embossed with black over the embossing so they are easy to read. I'm selling them for $4 per bracelet (shipping is included in base price).  A portion of the proceeds will go to TIC-NC.  So let's fight Lyme together!

Go Fight Win!

Friendships

I really begin to think about the value of friendship every now and again. I think of friendships of the past and how some friends truly are only meant for one season while others are meant to stick with us for a few and sometimes we get really lucky and a friendship last a lifetime.  I remember my first best friend.  Although our friendship ended abruptly, we reconnected online a couple of years ago.  I remember most of my friends from elementary school.  I thought they were "one season" friends - but the internet has helped us reconnect.  Then there were high school friends - Some of them I still see on a monthly basis and others I haven't seen in years.  One high school friend has been my best friend for at least the last 10 years.  

Then, there are my Lyme friends.  When I was diagnosed, I got online and searched for every single Lyme forum there was.  I must have been on five different Lyme boards.  We all had "user names" and it was very "anonymous,"  however some people I found myself connecting with.  After a while, the forums lost their usefulness.  As I learned more and the groups got more volatile, I left the groups.  However before I did, I was able to connect with my friends from the forum on facebook. Well, the thing about Lyme forums is that you really don't know how old some people are when you start connecting with them.  What I found quickly is that some of the people I was fond of were mother/daughter pairings.  All of the daughters were teenagers (actually they were all 15) and their mom's were on the forum to make sure their daughters didn't get into trouble on the forum and to protect them. 

As a woman in my 30's, I was concerned about talking to these girls 1/2 my age. I just knew that if they were my girls, I wouldn't want them just talking to anyone - so I got close to their mother's.  They were purposeful friendships.  First, I knew that I could connect with the adult on a different level and I could be a good contact for the daughters.  Someone they could safely talk to about issues.  I never realized that 5 and 1/2 years later that I would STILL be close friends with both the daughters and the mothers.   

I'd like to take a moment to talk about each of them - because they are each special in their own ways.  I have a different bond with each of them. They are each strong in their own unique ways. 

First I'd like to talk about my friend "S" and her Mom "V" - When I started talking to "S," I was really worried her Mom wouldn't want her to talk with me.  So I talked to her on the phone once and then I knew she was more than excited to have me talk with her daughter.  "S" and I talk on the phone at least once a month. I do this to check on her and to hear how she's doing.  I try to talk about crazy life stories just so she's not enamored with "how are you doing? I'm so worried" questions.  Together, we've formed several facebook groups have helped many over the last 5 years.  We had one wacky chat together one night 5 years ago and that wacky chat turned out to be an amazing tool for others. I went to S's high school graduation and spent time at her mom's home and we recently got to hang out in person again last weekend. 

Second, I'd like to talk about TL and her Mom.  I didn't get to connect with TL's Mom online, but TL knew that I was safe.  Then once TL came all the way to the east coast and did a Lyme Friends Tour.  She got to meet a lot of us in person during that trip.  I got to meet her mom.  TL and I have a bond that no one else shares.  Then this past weekend, we got to hang out again - on two different days and on one of those days she got to see my home.  She actually brought me a beautiful picture frame with scripture on it with our picture in it from her trip here in 2010. I don't get to talk to her on the phone all that often because of the 3 hour time difference, but we do get to chat online often.  We encourage each other. 

Next, there's K & her mom J.  Now J has got to be the most caring understanding person I've ever met.   Now honestly when I'd talk to these girls back in teh day, I did my best to be an uplifter. I rarely complained about my own ailments, but one day I had a really bad day and I really needed to talk to someone.  K offered me her Mom's phone number and I got to talk to J on the phone. In just a few sentences, J calmed me down and helped me to realize that I was safe and that the journey I was on was normal.  K & J live roughly 3 hours from me and for the first time this past weekend, I got to visit with them in person. 

Then, there's H&D.  I have yet to meet them.  We "just" missed each other this weekend.  I talk to Mom now more than I talk with H, but there's still a bond. - There are so many more stories like this -

Now, we've all been friends for this unbelievable season in our lives. I think we will all be life long friends.  Now the funny part about all of this - is that they were all 15 when we connected online and now they are all 21.  I've "watched" them grow up and mature.  I feel like a proud mama that has watched them grow from these girls to women. 

Well all have one thing in common:  Lyme Disease.  That is what brought us together, but we encourage each other and lift each other up in times of weakness and isn't that what friendships are for?  Yes, they are my Lyme friends - Yes, I met them on the internet.  However, they know me.  I know them.  In some ways, we probably know each other better than our healthy friends know us.  I am so glad that these friends didn't just last during my "getting to understand Lyme Disease in a bunch of forums season."  I'm glad we stuck around and I can't wait to see these ladies again. 

With Lyme, it is a struggle to find support.  People say they want to help, but then they don't.  It's not that they don't want to or can't - it's just that they don't know what to do and we don't want to ask because we don't want to put anyone out and ask for help.  Lyme connections are important for those of us with Lyme.  It's important to connect with someone that gets it and unfortunately you don't get Lyme until you get Lyme. 

Want to support Lyme patients?  Register to walk in the Beat the Bite 5K in Cary NC.  Come and talk to one random Lyme patient. Ask their story.  It will shock and inspire you.  It will change your life.

September loves!

The things I love about September.

• The Cooler Weather -

• The Beginning of School (yes I know that most schools begin in August, but I feel that it really doesn't get started until September - this gives kids something to do in the neighborhood except for playing "Olympics" off the trampoline.  Now this is actually quite funny because I actually enjoy watching out the window and watching the kids "RUN" and jump on the tiny exercise trampoline and see how far they can jump.  My husband and I call it the Long Jump off the mini Trampoline.  Admit it - you're now really interested in knowing how far you could jump off of the mini trampoline.  These pre-teens have inspired you.  Okay, maybe not - but it sure is refreshing to see children exercising and having fun outside instead of zipping up and down the street with loud ATVs. 

• Cooler Weather = Warmer Clothes.  It means, I can hide my hair with hats again.  I love particular hats.  I'm not sure if I can find my two favorite hats since we moved, but I'm gonna try because I love those things.   Also, I am such a big lover of pants.  If I had to choose between pants and shorts, I'd choose pants every single time. Until recently, I only wore shorts sparingly.  However, it was so hot this summer - I had to wear shorts.  Now there is one downside to September, it's that summer dresses are no longer fitting to wear - but that's okay it wasn't until the last few years that I began to wear dresses anyway.  I've accumulated quite a few though.  

• September = start of football season.  Now I don't' care about football, but it means marching band is in full swing.  Drive by any high school on a Friday night that has a marching band program and you can hear the sounds of instruments and the beating of a drum. My favorite time of year.  Although when I marched, the season wasn't "enjoyable" until October.  

• I tend to plan fun things in September. I don't know when this started, but it just did.  Last year, I planned a Lyme Lunch with all of my online Lyme friends.  In 2008, my husband and I went to the beach to participate in a CF walk for my friend Tricia.  During that same time, I amazed myself by climbing two light houses.  No big deal LOL.  This month I went to the beach for a day trip, but I can promise you there will be no climbing of light houses!  Also, the trip to Charlotte.  AND a Lyme Lunch.  It's also the "dating" anniversary of my husband and me.  I know those don't count, but - when it's a big one like FIFTEEN YEARS - then it counts. 

• Now you may think this one is kind of strange - odd - but I love September because it is the month my dearest friend Eva left this world and entered the kingdom of heaven.  I hated it for me, but oh how I loved that my friend Eva was no longer in pain.  

•  I just love September.

Beat the Bite 5K

 Reminder day for Beat the Bite 5K and 1 Mile Fun Run!

Fundraiser for Lyme Disease - I rarely flat out fund raise.  You will rarely hear me ask for money, but today I come to my readers (I know there aren't that many of you, but I ask none-the-less) for help.  I realized today that if all of my friends and family on facebook donated even $1 that I would collect almost $600 and that if each of those friends or family donated a generous $5 that it would be over $2800.  So today, I come to them and to you with my hand held out.

The other day I mentioned the 1st Annual Beat the Bite 5K and 1 Mile Fun Run.  It was right before my beach trip on Sunday when I first heard about this.  A friend of mine (huge advocate in NC) told me about it.  So I contacted the Beat the Bite founders and realized this:  They did not have Lyme Disease.  They created this organization and this 5K for their little sister.  I was blown away.  I invited them (all three sisters) to the beach, but only one was able to attend with such short notice.  I was able to get to know such a sweet woman and feel very blessed to now call her my friend.

This race is happening for two reasons.  The first is to raise awareness for Lyme Disease in North Carolina.  The second is to raise money so that we can continue to raise awareness for Lyme Disease in North Carolina.  On Beat the Bite website, you can register for the 5K or the 1 Mile fun run.  Register for the 5K for $25.00 or register for the 1 mile fun run for $10.  Don't live in the area or won't be able to attend.  That's okay.  You can sponsor someone to walk that otherwise wouldn't be able to do so.  Let me know and I can hook you up with a friend or two or twenty. 

Please help us continue to raise awareness in North Carolina.  Find all the information you need about the organization Beat the Bite & the 5K run at this website:  http://www.beatthebite.com .  If you donate or are going to the walk, let me know!  I'd love to meet you there or simply say thank you for your generosity.  We're trying to make this event HUGE!  So spread the word about Beat the Bite and the 5K Run.

PS.  You will see this post again before October. 

Charlotte Trip

I heard that a very good online friend of mine from California was coming to North Carolina in September.  She arranged it so that she would stay in my neck of the woods, but would be staying most of her time in NC with another very good online Lyme friend of mine in the big city of Charlotte.  "J" told everyone they could come visit with "S" and her daughter "K" while "S" was in town.  So I looked at my calendar and realized that if I was going to visit then I would have to visit on Saturday the 22nd. The problem with this is that I had a beach trip last weekend and was extremely exhausted.  So I had decided not to go.  That I would see S when she came to my town and that I could go visit with K & J later when I wasn't so tired.

Then, I got word that a few more people were going to be there.  So, I decided I *had* to go.  There was no excuse I could come up with that would pacify me later when I'd feel the utter disappointed of meeting all of these ladies.  So, I invited another Lyme friend to go with me (S2).  S2 went with me to the beach and we had such a great time I knew she would be the perfect riding companion.

We got on the interstate and drove straight to - well not their house.  I thought that I would like to continue my clock tower tour.  So we drove straight to UNC-Charlotte.  I took a LOT of photos.  Not as many as I usually take actually, but still - 94 pictures at this one area of UNC-C is quite a lot.  I was blessed that most of them turned out exactly how I wanted them to.  All of my pictures are straight out of camera shots.  My camera has different settings that allow me to tweak the shots before I take them so they come out slightly different than if I were to just set it on Auto and snap away.  I used two different lenses with these shots.  One was the standard lens I use and the other was the lens that can zoom in close to something far away.  4 of the 5 shots were taken by me.  The one of me in front of the clock tower was taken by my friend S2.

After UNC-C, we drove to J's house.  I'm not posting any pictures from that trip, but we had a blast!  We were there for a little over four hours.  It was well worth the pain I feel today. 

15 years ago part 4

** continued **

On September 23rd, I started my email.  It was a doozy.  I listed all of the reasons why it would never work out, mainly that if I started dating him - it would be a rebound and that it was a long distance relationship and those never work out.  However at the end, I said that yes I would go out on a date with him.

That email - those few days - changed my life.  I began the journey with my husband 15 years ago today.  It seems like yesterday. 

It was a week or two later that I came down for our first "official" date - I met him at a local mall and he was standing at a bridge.  I have never been as nervous as I was on that date.  I had no idea what he had planned.  I had no idea what was in store. My palms were sweating as I drove past him and I was shaking when I got out the car.    Then we proceeded to have one of the best first dates.   Our first meal as a couple was at Burger King.  Our first date night - to see an obscure comic that I've loved forever, but he didn't know it.   Those few weeks changed my life.  I realized we can be a little spontaneous with our planning and I realized I was finally dating someone who cared as much about time as I did.  In fact, he's worse. LOL.  The other day he left for work at 8:15 and arrived to work at 9, but didn't need to be there until 10.

I often wonder if I hadn't changed my plans on the 21st - if we had just eaten a quick bite for breakfast instead of going on the unofficial perfect non-date - would I have said yes?  I'd like to think so.  :}

15 years ago part 3

 continued ---

And when we said we were going to go back to the way things were before we started dating, we meant it.  In fact, the next day he picks me up and we walk together to the library.   I think if no one had known we had broken up, no one would have known.  We rarely spent a day apart even after we broke up.  We ate lunch and dinner together in the dining hall every single day.  He would walk me to classes if he had the chance and he would walk me back to my dorm after I was done studying at the library to ensure I was safe.  Our friendship was that solid.  So back to the library on September 22nd - 15 years ago today -

I get to the computer and check my email first.  I hadn't been able to check on my email since the Thursday before the wedding.  The first message I saw shocked me.  It was from my friend, Rob.  "If I pay, it's a date."  It was his response to my message which I did not see where I had jokingly asked if he was paying for my breakfast.  However, I did not see this message before I left.  I laughed out loud because he had indeed paid for my breakfast.  Then, I got uncomfortable.  Then, I see his second message.  He was concerned because I did not let him know I had made it back to school.  He left a clever message about the things that could have happened to me on the way home.  I don't remember the exact things, but some of them included alien abduction and a car accident.  I laughed.  It was funny.

I replied to his message saying that I was sorry that I didn't make it to the library to let him know that I had made it home safely, but that he left one option off his list and told him what happened the evening before.    His response shocked me.  I think it took me a good 10 minutes to pick my chin off the floor.  He had asked if I would go out with him.   Now you see, what I realized later is that he had tried to ask me out on a date several times.  However every time he had garnered up the courage to ask, I was dating somebody.  So this time, he decided he was not going to let time pass him by.  He was not going to let somebody else have his opportunity.  I just sat and looked at the email and decided to give myself an opportunity to think first respond second.  I simply responded asking if I could have 24 hours to think about it.  After all, I am a planner.

My ex was at the other computer so I grabbed him by the arm and pulled him out of the library.  I needed a friend to talk to and he was the best thing I had at the time.  I still shake my head at the fact that I asked my Ex of not even 18 hours of his opinion of what I should do regarding Rob's question.  We sat together and made a pro con list and by the end of the evening I had my decision made.  I started pre-writing an email. 

** to be continued **

For Juliet

Juliet posted a comment that I wanted to address to her.  She wrote on a post that was so old that I wasn't sure if she'd be able to check to see my response.   So I copied my response and here it is for Juliet.

This is from memory so please pardon if there are any misspelled words or misinformation.  This is MY understanding of what LDN is supposed to do.

LDN is Low Dose Naltraxone. Originally, Naltraxone was created for something else, but they realized in small doses it boosted immune function which is supposed to help your body kill Lyme (that's my understanding and it's my really simplistic way of understanding).

However, for me -- I had such difficulty with the drug itself and the side effects that it was never able to do this.

Some people claim LDN is the perfect helper for them while others say it did nothing. LDN for me may have prevented the disease from progressing, but it did not help my immune markers because I wasn't able to take a therapeutic enough dose. Recommended dosages is 4.5mg and I couldn't get above 1mg without tremendous side effects. .5mg and 1 mg gave me terrible headaches and vivid dreams which woke me often. So I've not been on this treatment in a while. I write a few blogs on LDN. If you look over to the labels on LDN and LDN cream, you can read more.

Thanks for reading!

15 years ago part 2

Continued ---

So on the morning of September 21st (15 years ago today), he picked me up and we went out for breakfast.  However on this day, our plans changed.  They morphed and for the first time ever it did not make me anxious.  Our original plans were to go eat breakfast and then for him to take me back to my parent's house and then for me to head to college.  I had planned for us to hang out for 80 minutes max (20 minutes of transportation and an hour of eating and conversing).  As we were sitting and conversing and laughing, I realized that I wasn't ready for our fun to end.  I really just wanted to hang out with my friend for longer.  I thought just this once I would break my plan even though I had a time schedule.  I made a suggestion that I would be cool if we could hang out longer.  Hang out we did.  We went to the lake and to the rock quarry (because I had never seen it) and finally to the bowling alley. Then, we made it home. 

I was thinking 1/2 way through our lake walk that if I could describe a perfect date - that what was happening was the perfect date - except there was a huge problem.  This wasn't a date.   There was no hand holding or flirting.  There was no "date" discussion at all.  This wasn't a date.  This was a friend. I shrugged off my thoughts and continued to have a great time - with my friend.  I spent 5 hours on my drive back home and I couldn't stop thinking about the wedding, the time I spent with my friend and the direction my life was headed.  I couldn't stop thinking about the spontaneous of it all and how much fun I had. 

I arrive back to my college dorm room.  I remember this room.  I hated it.  I didn't mind the room so much, but I did not like the girls on my hall. They were like sorority girls without the sorority.  Cliques here and cliques there, but I didn't click with any of them.  My roommate lived with her boyfriend off campus - so I had the room to myself.  I think I saw my roommate all of three times the entire semester and two of those were after I called her to tell her that she had messages on the machine.  I arrive to my room four hours later than planned.  I got home to see 20 plus messages on my machine.  It wasn't unusual since I had been gone for a few days and my roommate wasn't there to have a bunch of messages, but what was unusual was who had left the messages and when. 

My guy had left all of these messages over the course of the 4 hours I was supposed to be there.  He was so worried that he called every 5 or 10 minutes.  I am NEVER late.  If I say I'm going to be back after being at home by Noon, then I'm back by Noon.  I'm definitely not back at 6pm.  While listening to all of these messages, I jumped out of my skin because he knocked on my window - I let him in and the look on his face was two fold.  First was of relief and the second was of pure terrification (is that a word?).  He was absolutely terrified that something had happened to me and when he realized I was okay he was relieved.  We went out for dinner and then had the longest conversation of our lives. We discussed our relationship. We discussed things that had gone wrong and things that had gone right.  We finally decided together that our relationship needed to go back to the way things were before we started dating.   I think he and I talked from 6pm until well past midnight.  It was the best and worst conversation we had ever had. 

*** To be Continued ***

15 years ago

It hit me fifteen years ago today that my life was going down a path that I didn't like.  I was struggling to see my future.  September 20, 1997 - I saw old friends and parents of friends I hadn't seen in a while.  I was at a wedding watching two people exchange their vows.  I do not remember much about the wedding (in fact, these two people divorced a many years ago and the bride is now remarried to a different man), but I remember thinking that my life was not headed in the right direction.  I remember trying to place myself as a bride with my current guy and I just could not see it.  This guy and I had never discussed marriage.  We had never had a serious conversation about life.  We were great friends before and I suspected that should our dating relationship end that we would still remain great friends.

I did some serious thinking at this wedding and reception.    I was to go back to school the next morning, but first I had a friend on my agenda.   My friend had asked me to go out to eat breakfast with him before I went back to school.  I'm very much a list maker and an over planner.  I am very much a "on time" kinda person.  I am never late and I prefer to have a specific plan for every single thing I do.  I am NOT spontaneous.  My friend picked me up at my parent's home on September 21 (15 years ago) and my life changed.  The first thing I realized was that he was on time.  Not only was he on time, but he was a few minutes early.  I could hear the angels singing from Heaven because a friend finally got that I was particular about my time.  Most of my friends are spontaneous and are often a bit late.  I think it must be to overcompensate for me HAVING to be on time all the time.  I've always thought that God is trying to tell me to slow down and be a little more spontaneous. 

So, he picked me up and we went out for breakfast.  However on this day, our plans changed. 

** to be continued **

Beat the Bite 5K

Fundraiser for Lyme Disease - I rarely flat out fund raise.  You will rarely hear me ask for money, but today I come to my readers (I know there aren't that many of you, but I ask none-the-less) for help.  I realized today that if all of my friends and family on facebook donated even $1 that I would collect almost $600 and that if each of those friends or family donated a generous $5 that it would be over $2800.  So today, I come to them and to you with my hand held out.

The other day I mentioned the 1st Annual Beat the Bite 5K and 1 Mile Fun Run.  It was right before my beach trip on Sunday when I first heard about this.  A friend of mine (huge advocate in NC) told me about it.  So I contacted the Beat the Bite founders and realized this:  They did not have Lyme Disease.  They created this organization and this 5K for their little sister.  I was blown away.  I invited them (all three sisters) to the beach, but only one was able to attend with such short notice.  I was able to get to know such a sweet woman and feel very blessed to now call her my friend.

This race is happening for two reasons.  The first is to raise awareness for Lyme Disease in North Carolina.  The second is to raise money so that we can continue to raise awareness for Lyme Disease in North Carolina.  On Beat the Bite website, you can register for the 5K or the 1 Mile fun run.  Register for the 5K for $25.00 or register for the 1 mile fun run for $10.  Don't live in the area or won't be able to attend.  That's okay.  You can sponsor someone to walk that otherwise wouldn't be able to do so.  Let me know and I can hook you up with a friend or two or twenty. 

Please help us continue to raise awareness in North Carolina.  Find all the information you need about the organization Beat the Bite & the 5K run at this website:  http://www.beatthebite.com .  If you donate or are going to the walk, let me know!  I'd love to meet you there or simply say thank you for your generosity.  We're trying to make this event HUGE!  So spread the word about Beat the Bite and the 5K Run.

PS.  You will see this post again before October. 

Carolina Beach Trip 2

 Here are three of the five us on the beach - On the left was my dear friend "S" and in the middle my new friend "K" and on the right my new friend "J." "S" and I met one year ago today at the Lyme Luncheon. 

One of multiple waves! 

See -- there's another wave and a jump. LOL

A group photo.  "S", "B", ME, "H" and "K."  We were minus one friend, but he was taking the picture.

We had so much fun that we want to do it again. 

Carolina Beach Trip

In August, I began planning a trip.  This was a beach trip for me.  A day trip.  All I wanted was to put my feet in the sand and dip my toes in the ocean while hearing the ocean waves and feeling the wind against my face.  Well, I decided to invite a few people.  I actually invited 68 people, but I knew they wouldn't all come.  I knew that not even 10 would come, but I knew that the ones that would come -- would have a blast. 

We had a few things on our "wish" list - 1.  UNC-W  2. Riverboat Landing 3.  Carolina Beach

We started off with 5 at UNCW including myself.  Then, at the restaurant we added a new friend.  We've been friends online for a few months, but met in person for the first time.  She chose the restaurant.  And then, my elementary school friend and his wife (with their adorable little boy) stopped by to hug my neck. 

On the beach itself, we wound up with the original 5.  Two friends I've known for a while, but have known in person for a year.  Then, there were two new friends - brand new friends.  I didn't even know they existed a few days ago. 

I am exhausted.  I did way too much, but boy do I feel 1,000% better.  The waves and sounds and feelings of the ocean calmed me.  I went there with pounds on my shoulders and left with relief.  If it wasn't an almost 5 hour round trip, I'd be there every weekend. 

My friend Beth stole my camera and took several pictures of me. The one above is my favorite.  LOL. 

Under Our Skin Screening Addendum

I shared with everyone how the screening went of May 31st Under Our Skin went on June 1st.  I only had one picture to share that a friend took. I finally found the card reader and have more photos to share of that night.  Oh what a night. We had so much fun.

This view is looking down the hall way to the room we were in.

These are the cookies that Mindy left for us.  

Mindy is the lady that helped us get this set up and she could not attend. 

We had a raffle and these were our prizes graciously donated by friends and businesses.

 

 A view of the audience. 

 I started getting some noticeable twitches part way through the documentary so I stepped outside the room to try to get it under control.  This was the view from outside the room.  Any person walking down the hall could see what was going on. 

 Our poster set up outside the building directing people to come in to see the documentary.

After the screening, Pete & I spoke.  

 My Lyme friends.  Yes, we all have Lyme.  Yes, we all live in North Carolina.  

Under Fire

Physicians being under fire is not new in the Lyme literate world. I discovered this even before my  diagnosis.  When my husband and I were pursuing answers to this mysterious illness, we uncovered a doctor under investigation in North Carolina on our local news channel.  Shortly after my clinical Lyme diagnosis, we watched the documentary Under Our Skin (click to watch on HULU) including a Question & Answer session with the director of the film Andy Abrahams Wilson.  The documentary has several cases where Lyme Literate doctors were under fire during the time of filming.   This eye opening documentary shows how Lyme Literate doctors are scrutinized by others in the medical community which includes the medical board, insurance companies and other doctors.  

Skepticism is the questioning attitude towards knowledge, facts or opinions that are stated as facts.  Patients with Lyme Disease and doctors that treat chronic Lyme Disease face another problem in addition to the disease itself.  We face chronic skepticism.  As a patient, I am often questioned or criticized by the choices I make in regards to my treatments.   Physicians and nurses in the traditional medical community often raise their eye brows if I mention the words Lyme Disease.  People I know question whether I am choosing the right doctor and treatment because they've heard that Lyme Disease isn't this difficult to treat. My question is this:  How come every time I mention that I have Lyme Disease to someone they know someone  who "was very sick" or "almost died" from it if Lyme Disease is so rare?

It is such a puzzling phenomena that this illness doesn't seem to exist in the traditional medical community.  If doctors don't believe in the chronic form of Lyme Disease, why does the Red Cross have an official statement regarding blood donation?  The Red Cross states that they will accept persons with Lyme Disease if they were treated and the disease has been resolved and at least one year has passed.  However, those with the Chronic form of Lyme Disease are not eligible to donate (Official Red Cross Source). In addition, there are medical guidelines for joining the national bone marrow registry for Chronic Lyme Disease.  Fully recovered Lyme patients may register, but those with Chronic Lyme may not.(Official Bone Marrow Source)

If this chronic disease doesn't exist, then why is it listed that those with Chronic Lyme Disease can not donate blood or bone marrow?   It's common knowledge throughout the Lyme community that those with Lyme Disease should not register for organ donation in regards to transplantation. After intense research I have been unable to find an official statement regarding this; however, it seems to me that if scientists have found bacteria in the blood that is stored for donation (the Red Cross doesn't allow for donation for this reason) then it's shouldn't be a reasonable stretch that those with Chronic Lyme Disease should not donate their organs for risk of transmission.  It also seems to me that since our body are riddled with bacteria that it would compromise an already unhealthy individual. 

There is a disagreement between two sets of physicians. The physicians that are grouped with the Infectious Diseases Society of America (IDSA) state that Lyme is rare.  They suggest that Lyme only exists in the northern area of the United States of America and that Lyme does not need more than 28 days of antibiotics.  The physicians associated with the International Lyme and Associated Diseases Society (ILADS) have a vastly different point of view. The doctors are dedicated to the proper diagnosis and appropriate treatment of Lyme and its associated diseases (ILADS Source).  Did you realize that one tick bite can give more than one illness?  A few of these illnesses are Rocky Mountain Spotted Fever, Babesia and Bartonella, but there are many other tick borne diseases.  ILADS support physicians through research and education in order to advance the standard of care for Lyme and other tick borne diseases.  The two sides constantly butt heads.  One group benefits patients and the other group benefits insurance companies. 

The media spotlight of Lyme increases drastically in the spring time due to the rise of public awareness of ticks; however, the media speaks to physicians that have only been taught the basics of Lyme Disease.  The media just exposes the theories taught to them by IDSA trained physicians.   These are Lyme Disease myths, so to speak.  Generally, the public is told that Lyme is tough to get, but easy to treat.  They are told that a tick must be attached for several days in order for transmission to occur.  They also suggest that each patient with Lyme Disease will get a bulls eye rash.  The media doesn't even touch on the fact that the testing for Lyme Disease is inaccurate  The media outlets only have limited time to touch on Lyme Disease so the public is left uneducated when it comes to the endemic of the disease.  

The news stories on Lyme often infuriates Lyme patients. Media may share an "unusual" story on Lyme, but then in order not to cause widespread panic - they repeat that this is not the usual presentation and Lyme is hard to get and easy to treat.  The Lyme community maintains a level of excitement when hearing of mainstream media highlighting tick borne illnesses.   However, I always find myself a little leery as a viewer since I am typically disappointed with the lack of appropriate information.  They don't inform on other tick borne illnesses.  They also leave out recent theories that Lyme may be transmitted much quicker than previously thought, the inaccuracies of the blood tests and the Lyme communities thought that it may be transmitted by other vectors.  They rarely speak with true Lyme Literate Medical Doctors who can relay those facts or theories that Lyme patients presume are facts. 

The IDSA presents the community with guidelines for different diseases (IDSA Source).   The Center for Disease Control (CDC) follows the IDSA guidelines.  Insurance companies follow what the CDC thinks.  Therefore when doctors think and treat outside the IDSA Lyme Disease box, they are harassed by the traditional medical community.  Dr. Jemsek was the first physician I heard about being brought to the medical board regarding his treatment of Lyme Disease.  It was all over the news here in North Carolina.  Long story short is that Blue Cross Blue Shield (insurance company for those that do not know) did not think his treatments were appropriate for Lyme patients.  Unfortunately for his patients, our medical board agreed.  He lost his medical practice in North Carolina and subsequently suffered from bankruptcy trying to fight for his right to treat patients who chose his treatments.  He moved his medical practice to South Carolina and after a short while he was asked to leave.  He currently practices in Washington DC.

The only world renowned pediatric specialist in Lyme Disease, Dr. Jones, is another Lyme doctor under fire. Families come from all over the world to see Dr. Jones because of his mass knowledge of treating children with Lyme Disease.  His joy comes from making children better.  Yet, Dr. Jones had to fight for his right to treat.  Many physicians continue to fight for their right to treat.  Some of those had to give up practicing altogether which left their patients in dyer straights.  Currently, there is a new physician fighting for his right to treat.  This is scary my dear blog readers because, as I view it; the more LLMDs under fire, then the more difficult it is for those doctors that treat Chronic Lyme.  Dr. Jaller needs our support.  There was a petition going around on the internet, but it closed suddenly and no one else can sign it.  I must have signed it just in the nick of time.  After "signing," we could leave a note for those that read the petition.  My words were this:

"Physicians such as Dr. Jaller are needed in order to treat Chronic Lyme Disease and other tick borne illnesses. Too few practitioners are capable of properly diagnosing these tick borne illnesses. I was personally misdiagnosed for 12 years before being properly diagnosed in 2007 by a physician trained by ILADS. Dr. Jaller and Physicians like him should be commended, not condemned."

Friends, I urge you to support your Lyme Literate Physicians.  I encourage you to spread awareness of Lyme Disease. I have never had the opportunity to meet Dr. Jemsek, Dr. Jones or Dr. Jaller, but that doesn't mean their plight is any less important.  I also urge you to support each other.  We are all under fire all the time.  Skeptics are always out there.  Share this blog link with your friends.**  We should speak together now and I encourage us to speak louder than ever.  Our doctors should know they can count on our continued support and our Lyme friends* need to know that we all have their backs.  We need each other because there is strength in numbers.

"but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:31

*I would like to personally thank all of my Lyme friends that had a hand in helping me in researching and proofreading this article. Thank you so much for your dedication to the Lyme community.

** When you share this link on your blog, let me know via comment so I can visit yours.  :o}

*** This was posted on Lyme Aware:

Local 5K for Lyme Diseae!

A brand new non-profit group called Beat the Bite is helping to spread awareness in North Carolina! Their first event is coming up on Sunday October the 14th (2012) in CARY North Carolina and it's the First Annual Beat the Bite 5K & 1 Mile Fun Run!

Come join everyone for fun in the sun - There are three levels of participation.  First group are the competitive runners, the second group are the recreational runners and the third group are the one mile fun runners (walkers). Registration is $25 for the 5K portion of the race and $10 for the 1 mile fun run.

Register for participation here at Beat the Bite.

Can't participate because you don't live in the area?  That's okay because you can send donations anyway.
All proceeds from this event are going to TIC-NC (Tick-Borne Infections Council of North Carolina).

I am hoping to be able to go AND walk it out, but I plan on supporting Beat the Bite any way I can even if I can't actually participate on the day.  Who wants to walk it out with me!?!

***

Under Fire Preview Part 2

 I have yet to finish Under Fire, but thought you'd like to read the 2nd paragraph.  I think I"ll finish tomorrow, but if I don't I'll leave Preview Part 3 and post the full post on Saturday. 

**

Skepticism is the questioning attitude towards knowledge, facts or opinions that are stated as facts.  Patients with Lyme Disease and doctors that treat chronic Lyme Disease face another problem in addition to the disease itself.  We face chronic skepticism.  As a patient, I am often questioned or criticized by the choices I make in regards to my treatments.   Physicians and nurses in the traditional medical community often raise their eye brows if I mention the words Lyme Disease.  People I know question whether I am choosing the right doctor and treatment because they've heard that Lyme Disease isn't this difficult to treat. My question is this:  Hw come every time I mention that I have Lyme Disease to someone they know someone  who "was very sick" or "almost died" from it if Lyme Disease is so rare.

To be Continued *** 

Preamble to Under Fire

I finished my upcoming post on Monday, but decided to work a little more on it yesterday which lead into some extensive research.  So, it may be another day or two before I'm ready to publish it. However, I will be glad to share with you the beginning (which may or may not change).


Under Fire:

Physicians being under fire is not new in the Lyme literate world. I discovered this even before my  diagnosis.  When my husband and I were pursuing answers to this mysterious illness, we uncovered a doctor under investigation in North Carolina on our local news channel.  Shortly after my clinical Lyme diagnosis, we watched the documentary Under Our Skin including a Question & Answer session with the director of the film Andy Abrahams Wilson.  The documentary has several cases where Lyme Literate doctors were under fire during the time of filming.   This eye opening documentary shows how Lyme Literate doctors are scrutinized by others in the medical community which includes the medical board, insurance companies and other doctors.

*** to be continued ***

Upcoming Post

I have been working on a post for a few days and I have almost completed it.  I wanted it to be "just right" before putting it out there for all the world to see.  This is a post that I want the world to see ---- It's called, "Under Fire."

I am such a "quiet writer."  I write and if someone sees it, that's okay.  However, this is the post I want the world to see.  So if you all would share "Under Fire" with your blog readers (especially those of you with Lyme Disease blogs), I would greatly appreciate it.  If you do, let me know so I can check out your blog. 

Thank you so much and hopefully I can edit it soon and have it up by tomorrow or Wednesday. 

The Phenomenal Closet Part 2

In January of 2011, I realized I was living in a mess of a house.  I was frustrated so I started off in the most unlikely place:  The Closet.  I showed of photos in this post.  The Phenomenal Closet.   I have never been one to keep a tidy anything.  I am well known for being cluttered and if we're being honest, "Cluttered" is a nice word for what I am.  My closets have always been especially bad.  If it didn't have a place, I'd chunk it in the closet.  It's been that way since I was little.  In High School, my closet was a danger zone.  Open it up and something was sure to pop out.  I once told someone in high school that they could have my extra radio.  The caveat was that they had to find it --- in my closet.  She opened up the closet and stuff poured out of it.  She said forget about it. LOL.  

So when I cleaned out my closet in January of 2011, there were doubters that I would keep it clean.  If we're being honest here, I was one of those doubters. I set out to prove those doubters wrong.  It stayed clean from January 2011 until we moved in May 2012.  Now that folks is impressive, especially for a clutterer.  

When we moved to the new house, I organized it as best as I could.  However, I was exhausted and just didn't have the energy I needed to make it as neat.  Then, we added winter jackets to the mix.  Everytime I walked into the closet, I got frustrated.  This morning I was determined to rectify the situation.  I started off with the jackets. I simply wanted to move the jackets. 


This is the story knock off of "If you give a mouse a cookie."  I call it, "If Jennifer decides to move the winter jackets." 


If Jennifer decides to move the winter jackets, she'll have to move the dresses.

When Jennifer moves the dresses, she'll have to move the pants. 

When Jennifer moves the pants, she'll decide the pants aren't hanging neatly enough so she'll have to straighten them.

After Jennifer straightens the pants, she'll have to move the shirts to a new space.

After she moves the shirts to a new space, she'll have to space them evenly and hang them in color coordinated fashion.

After Jennifer finishes with the clothing, she'll decide to go ahead and move the king sized sheets and electric blanket, but first she'll have to move the shoes.

 

After Jennifer finds a place for all of the shoes, she'll have to find a new space for blankets and extra stuff.

  

After finding a space for blankets and the other stuff, she'll decide she needs to organize her shirts. 

And after she organizes her shirts, she must get a camera to take pictures of her progress.

And that's what happens if Jennifer decides to move the winter jackets. 

Assortment of Laundry

I have always had the biggest trouble keeping up with laundry.  I never seemed to have enough energy to do it.  I also have very specific ways of folding socks, shirts, hanging clothes and folding towels.  Sometimes my very sweet mother in law would see me falling behind in laundry and she would come over and put away clothes she knew had been washed.  While I appreciated her thoughtfulness, if anyone has ever seen my towel closet -- they would know, I have to have things in order.  All of my purple towels are stacked neatly together.  All of my blue towels are stacked neatly together. All of my dark beige towels are stacked neatly together.  Facing the same direction.  Socks are a completely different beast.  I have stopped "folding" my husband's socks, but I still like to put them together so that he can easily grab a pair.  Shirts have to be facing same way and they are color coordinated.  I blame my retail experience.  I could tell when I wasn't well because those things didn't bother me.  On the day I felt better, I'd open up my towel closet and have a fit. I'd pull them all out and fold them again.  It was frustrating.  Yes, I have a problem. I realize that, but it just makes me happy. 

At our old home under the bathroom sink area, we kept two laundry wicker hampers.  They were frustrating.  Little pieces would break off.  They were heavy so difficult for me to lift.  They held two or three loads in one hamper.  I also had some rolling mesh hampers (Like college students would use) that held clean clothes.  My problem was that by the time I lugged the wicker hamper to the washer, load it up and lug the wicker hamper back (still with dirty clothes in it), my energy was zapped.  I could barely switch over the clothes to the dryer.  In fact, truth be told, most of the time I'd forget and they'd have to be rewashed. 

So when we moved to the new house, I had to come up with a better system.  I had to.  I didn't want piles of clean clothes everywhere along with piles of dirty clothes.  We went shopping for the "perfect laundry basket."  It couldn't be too heavy or hold too many clothes.  We discovered a tall white plastic basket that had wheels and handles.  So if I was too tired to lift, I grab a handle and roll.  We bought five of them.  One basket holds dirty clothes that are put away in the dresser or chest of drawers.  One basket holds dirty towels or dirty clothes that are hung in the closet.  One basket holds "Special Wash" laundry.  One basket is meant for bulky or really dirty clothes.  Last, but not least is the "Clean" laundry basket. 

Three of the baskets are located in our closet (dirty clothes) and the other two are located in the laundry room.  One one of the dirty baskets gets full, I take it to the laundry and dump into the washer.  I bring the hamper back to its place in the closet (empty).  I put the newly washed clothes into the dryer on the same day (because it's not overwhelming to bring it to the washer any more).  Once dried if I have enough energy, I put the clothes into the "clean" basket and take to its destination spot (closet or dresser).  I put away on the spot.  There are no other options. By pre-sorting the laundry when removing it from my body, it makes it easier to put away.  In the old system, it was a free for all. I'd have a mix of hanging clothes and folding clothes.  I'd fold them or hang them in a central location and by the time I had them folded or hung, I was too exhausted to put them away.  This new system has helped tremendously and I haven't had to rewash a single load of laundry since we moved in.  I'm also no longer drowning in laundry. 

Thankful Post

Things I am thankful for this morning.

• God's Grace. 
• Waking up
• I loaded the dishwasher and ran the dishes through a cycle.
• My supplements are beginning to work.  
• Fewer headaches and more energy
• Case in point, in addition to the dishes, I completed one load of laundry
• Which brings me to my next point, I'm thankful that I finally figured out a laundry system that works for me.   
• Electricity
• Lyme friends that visit even when they don't feel well.  
• Which means that I'm thankful that my downstairs is visitor ready!
• We paid our last COBRA bill (read EXPENSIVE).  Starting next month, we'll have regular insurance.
• Which brings me to my next point, I am thankful that my husband's temp job will become permanent before it's time to pay our next COBRA bill.  
• What a wonderful day to be alive! :o)

Tackling The Bonus Room.

When we moved from our first home to this one, we brought with us boxes that hadn't been opened in many years.  In those boxes contained memories of times long ago. When we moved in, our strategy was - if we know which room it goes in and can be put into place (IE furniture) - put it into place.  Everything else placed into the garage.  A few weeks went by and we decided there were a few things that needed to go ahead and be put inside the house.  So we moved most all the inside boxes into the living room.  After a few weeks of tripping over everything and getting extremely irritated, we decided to bring all the boxes upstairs and into the bonus room.  This is where (theoretically) we could unpack and find a home for everything else. Also by this time, everything that was going to need to be downstairs was already downstairs.  Theoretically everything up in the bonus room or in the garage would need to find a home upstairs or garage (respectively). 

Here we are, three plus months later, and the downstairs looks awesome.  It is visitor ready at almost any time of the day.  There are a few "hidden surprises," but overall the downstairs is organized and neat. Then, we walk upstairs.  I just shake my head.  I pretty much avoid the upstairs altogether.  So yesterday, I decided it was time to move some stuff.  We walked in and if it looked like it could be Christmas Stuff it was moved it to a bedroom that was empty.  I opened every single tote or box and unwrapped every single item.  I, then, DVD racked it.  LOL.  My husband jokes with me that when I want to 'look' like I'm cleaning that I organize the DVD rack.  There was a reason for the organization though.   I wanted all my tree stuff to go into one tote so that when it's time to decorate the tree, I only have to pull out one tote to do it.  I wanted all my snowmen stuff in one tote so that I know what to expect when I open that tote.  Then everything that already had its own box was stacked in the closet neatly.  I managed to put everything from two HUGE (unmanageable) totes into two medium (manageable) totes.  There are only a handful of items left and they will go into a third tote.  I know we have some more Christmas things in the Bonus Room and hopefully those things will be combined with the handful of items will fit nicely with those items. 
 
 Then we tackled "files."  Now, it would be simple of the files were already ready just to be put into our file cabinets.  However, we had probably 6 bankers boxes worth of files/paperwork.  Two of them were filed nicely and the other four -- well not so nicely.  We went through the boxes and I put out in three piles.  One pile would need to be shredded, one pile that we needed/wanted to keep and the final pile was a pile that I wasn't sure if it needed to be shredded or kept.  We wound up with two full banker's boxes of "shred" material, one full banker's box of files in files (although this could be worked through and organized better, but we'll wait for that another time) and a full banker's box with files not filled at all - and a completely empty box. 

Why is it that men have a box of stuff and women have a box of memories?  I'd look through boxes and remember the exact moment and feeling of the things in the boxes.  I felt happy.  My husband looked through his boxes and it wasn't until he came across his old Popular Science Magazines that he even had a look of nostalgia in his eyes.  I don't want to get rid of the acorn a dear friend of mine gave me in the 5th grade (nor will I !!!) that I held every day from the point he gave it to me until I graduated high school.  It was my secret (well I guess not anymore. LOL). I'm leaving my elementary jewelry box intact as is.  I remember how I felt as I placed each treasure in there.  It includes one of my lost baby teeth.  I remember not placing too many things in that box after elementary school.  I haven't looked in that box since college and I haven't pulled anything out since high school.  It was like my own little time capsule with tiny bubblegum rings, fake jewelry, girl scout patches, a lost tooth, a marble and that precious acorn plus many other memories.  To anyone else, it would be a box of stuff.  But to me, it's happiness in a box.

Lastly while in college, I wrote down a phrase.  I found it while digging through a box.  It said, "Children will soar like Eagles if given the wings to fly."  How Profound -