Monday, December 16, 2013

New posts at LTLL Wordpress

Since sharing that I began a new blog, I've written a few new posts.  Come check it out!

I have yet to work on getting some old posts from this blog over there, but I will.

On the new blog, I discuss my most recent follow up, discuss the difficulties of daily living of having a picc line and also how I was trying my best to be patient.

Please come join me over there as I will try to update more frequently, especially during the journey of the 2nd PICC line.

Tuesday, December 10, 2013

The Time To Ask For Help

A lot has happened over the last day.   I have been in and out of treatment for over 6 and 1/2 years.  I am hopeful that insurance will cover at least a small portion of my upcoming treatment, but I also understand the realities that many Lyme patients get denied coverage for IV antibiotics.  In order to fight, I need help.  I never dreamed that I would ever ask for outside help, but the time has come. 

Any contributions to my paypal account would be greatly appreciated.  Below is an easy to make contribution button for my treatments.  I want to send something back for your help so for those that donate $25.00 - they will receive 5 We Fight Lyme Together Bracelets.  For those that donate $50.00 - you will receive 10 We Fight Lyme Together Bracelets.  For those that donate $100.00 - you will receive 20 We Fight Lyme Together Bracelets.  This will continue while supplies last.

If you want to contribute an amount that isn't listed below, you can send it directly to the paypal account -

Thank you so much.  Even the smallest amount will help.

Thank you for helping me pay for treatments
We Fight Lyme Together Bracelet Sizes

Monday, December 9, 2013

New Blog Website

I have been thinking that since I am on wordpress for NC Lyme Advocacy more often than I am on blogger, that it might be better for me to open up Living the Lyme Life on Wordpress.  So I have.  I will be putting some of my older posts from here on the new website over the next few weeks, but for now I have a welcome post and information from when I got my first PICC Line in 2008.  Please feel free to visit and I hope to be posting on a more regular basis.  For a while, I may post in both places.  However eventually I suspect that I will taper off blogger and use only wordpress.

Yes, I'm alive!

I'd like to say I have no excuse for not blogging, but truth is I have a few reasons that I've not blogged. 

The first one is the absolute worst thing that can happen - I forgot my log in and my password - and my email address for the blog.  I couldn't log in.  I woke up at 3am - and REMEMBERED - and because I had a Lyme moment before I went to bed and didn't put the heater on a timer, I woke up to an almost 80 degree room.  Sweltering hot.  So I got up - piddled on the computer and just now decided to try to see if I actually did remember the log in and password.  Maybe I need to write that sucker down!   The next reason I've been quiet is that I've just not felt like sharing. 

Let's go back to that heater - I stay chronically cold.  However, it is not economically affordable to keep the house at a temperature that would keep me nice and toasty.  So during the day, I pretty much stay covered up with a blanket.  If I get too cold, I turn on the fire place and it helps slightly.  However at night, I freeze.  I do have an electric blanket and it works well, but if I scooch it around and it isn't on me directly, I shiver until it wakes me up.  So last winter, we got the bright idea to get a small heater for the bedroom.   It has a timer - and a thermostat.  So what I do - is turn it on for 75 degrees and set it to run for 2 hours. 

If I do this right as I get into bed, the room is cool enough for me to get to sleep and the room warms up so I'm cozy the first couple of hours.  If I get to sleep quickly, I sleep well through the night. And then the heater turns off - and the house heater continues to run when the rest of the house is cooler than 68.  So in the winter when I wake up, it is likely still 70 to 72 in the bedroom when I wake. It works well for me.  However, last night.  I failed to turn it on for 2 hours.  So - from 8 until 3 - the heater ran.  Also, the house heat ran.  So when I woke at 3am sweating and uncomfortable and feeling like I was going to pass out - I saw the temperature was at a balmy 78.3 degrees. I knew I wouldn't be getting back to sleep so I just got up til my body could feel a little cooler.  Now my toes are  freezing. I'll probably try to go back to bed, but doubt I'll get much sleep. 

Sleep:  Many Lyme patients have trouble sleeping.   I tend to not have this problem.  My problems is that I sleep too much.  However about one night a month, I'll have trouble either falling asleep - or - staying asleep. There is no rhyme or reason for that night in the month.  Tonight, there was a reason.  The heat.  Maybe it will still count for my once in December sleepless night.  Now the thing is I still got almost 7 straight hours of sleep - even WITH waking up at 3am.  However, I typically sleep at least 10 hours, sometimes if the dogs cooperate I sleep 12 or more. 

Well I hope to share more soon.  I've had so much go on since my last post, but I likely won't be back-sharing. 

Tuesday, October 1, 2013

Vector Borne Infection Night

NC Lyme Advocacy Presents Vector Borne Infection Awareness Night Featuring Award Winning Documentary: Under Our Skin on Tuesday, October 8, 2013 at the Johnston County Agricultural Center* (please see note at bottom regarding location)

Please EARLY RSVP by Friday October 4th in order to help us prepare for the event.  Registration gives us an idea of how many to plan for, but no one will be turned away at the door for lack of RSVP.


Although there may be a small registration table outside the auditorium prior to 5:30, the doors for the auditorium will open for the public at 5:30.

Preliminary Itinerary:

5:30 to 6:00 – Registration – This will be the time you can check in at the registration table, go look at the brochure & display tables, check out the snack booth (for those that RSVP and others on a first come first serve basis) and find your seat for the presentation

6:00 to 6:15 – Introduction & Welcome Message by NCLA co-founder

6:15 to 7:00 -An educational presentation will begin promptly at 6PM by Dr. Mike Waldvogel.  Dr. Waldvogel serves as the Extension Specialist and Extension Associate Professor at NC State  University in the Entomology Department.  He also serves as Director of Structural Pest Management Training & Research Facility.  The presentation will be 45 minutes long about ticks and mosquitoes.  Dr. Waldvogel will cover their life cycles, habitats where they live and how to prevent bites.

7:00 to 7:15 – Quick Break for everyone to stretch their legs a bit, run to the restroom, grab a quick water and for everyone to have a chance to look at the display again.

7:15 to 9:00 – Documentary of Under Our Skin will be shown.

9:00 to 9:15 – Quick Question & Answer

9:15 to 9:30 – Conclusion.

*note about address*

The Address is 2736 NC Highway 210, Smithfield, NC 27577*  Note from Amie. The map that is used by Google does not have our office listed in the right location.  If you use Mapquest or a GPS then they will take you to our office if you put in 2736 NC Highway 210, Smithfield, NC 27577.

If however you use Google maps or a GPS which runs off their system then you have to put in the address for 2640 NC Highway 210, Smithfield, NC 27577.  They don’t know why this happens and they’ve tried to fix it, but that should take you tot he right spot if your GPS uses google maps.

We would like to take the time to thank the following groups, companies or organizations for helping us with our Vector Borne Awareness Night.  Without the following, this event wouldn’t be happening
  • Johnston County Agricultural Center (Special thanks to Amie!)
  • NCSU (Special Thanks to Dr. Waldvogel for his presentation)
  • Lyme Disease Association (providing brochures, tick cards and bookmarks)
  • CDC (providing bookmarks, a few signs and some information on West Nile virus)
  • IgeneX – generously donating some tick tools for our first 30 registered guests and providing brochures
  • Damminix – generously providing a box of Tick Tubes to show at the event.

Thursday, September 19, 2013

Reintroduction and updates

I know that I have several new readers and based on an email I received I did want to reintroduce myself and give an update on how I'm doing.  I've taken bits and pieces from old blog posts and introducing some new information.  But first - I will answer a few questions that I received in email this morning. 

  • How well are you feeling into your treatment right now?
  • How long have you been in treatment?
  • How bad was it at the beginning?
I have been in and out of treatment since March of 2007.  When I first began treatment, the herxheimer reaction of traditional oral therapy was overwhelming.  I was barely able to function, but pushed through to work full time. However,  there were days where I had vertigo so badly and I even had hallucinations.  It was absolutely terrible.  So we swapped up therapies to alternative treatments.  Slowly, but surely I improved.  I went through a period of remission and did very little treatment during that time. Although I didn't feel completely healthy, I felt better than I had in years.  Then the fall of 2011 happened.  It was one of those things where I felt great in the middle of July of 2011, but at the end of July and August - I began doing what I call the "lymie slide,"  and then by September I felt completely miserable.  When I fell "off the wagon" in the fall of 2011, I fell hard.  At first we tried to go with alternative methods, but when those didn't seem to be working - we went hard core with oral antibiotics.  Then in July of 2013, I was so miserable that it was hard for me to even function.  I stopped going to things I always did (like the Lyme support group in the area that I've been leading lately).  So I began a strict detox protocol which included several things - supplements, lots of water, rebounding, lymphatic massage and ionic foot bath. I feel better than I did in July, but I am no where close to where I was when I was in remission in 2010. 

Now onto the "back story" -

I began this blog, Living the Lyme Life, in September of 2008.  I had already been in treatment for Lyme for 18 months and wish I had begun the blog earlier.  My name is Jennifer and this is my blog.  I began the fight of my life in 1995.  I wrote specifically on the years between 1995 and 2007 on a blog entry entitled Jennifer's Background Story.  This was specifically about when my fight began and the doctors I saw.  It talks about some of my experiences and also my experience the first time I saw my Lyme Literate Doctor.

Since my Lyme diagnosis in 2007, I've dabbled in other diagnoses too. I've had mineral deficiency, progesterone deficiency, heavy metal toxicity, multiple co-infections (including Bartonella & Babesia), anemia and multiple other health issues. A PICC Line was inserted into my right arm in July 2008 and I battled keeping it safe daily until February 2009.  Thanks to my wonderful nurses, doctors, insertion team and my husband, I was able to keep my line much longer than I should have.  I used it right up until the night before it was finally pulled and based on how it looked when we pulled it, it probably should have been pulled a few months prior. 

 Most people assume that because I had a PICC line that it was used for antibiotic therapy.  However, it was not used for this.  We used the PICC line for IV vitamins, minerals and other supplemental therapies such as Chelation for the heavy metal toxicity.  In addition to these things, I used an experimental IV protocol for about 9 months.  It is no longer available and I rarely talk about it because of its controversial nature.  However, I feel like that protocol did more for me than any other protocol combined.  It brought me to remission until the fall of 2011 when I slipped out of remission.

In addition to traditional oral antibiotics, I dabbled in alternative therapies including Low Dose Naltraxone.  Many have raved over this therapy to help with immune function, it gave me terrible headaches and caused sleep disturbances.  After trying for over a year to increase the dosage with little success, I gave up.  I also used some low pressure Hyperbaric therapy.  It relieved many of my symptoms including my terrible headaches, fatigue and mood swings, but due to symptoms of Babesia flaring I had to stop getting that therapy.

I've utilized a variety of homeopathic remedies and still use some of them even today.  About a year ago, I began a new antibiotic regiment taking three or four at a time.  I pulsed and even considered getting another PICC line to use specifically for IV antibiotic and supplemental therapies.  However I continued to get worse on the oral antibiotics. I pushed myself from January to May 2013 to live a more "normal" life and paid the price in June and July.  I felt that 95% of my life revolved around my Lyme/Babesia/Bartonella symptoms. I had some really bad days.  So when I returned for a follow up in July I practically begged to go another route.  So we decided to strictly do a detox protocol.  I have improved slightly, but no where near ready to return to what others call a "normal" life.  I worked full time from the time of my diagnosis (2007) until December of 2011 when I finally made the decision to quit my full time position.  At the end of my notice, my boss offered and I accepted a substitute position with the caveat that I could say no if I was unable to work due to health or appointments without them making me feel guilty.   So I get to go in every now and then and it gives me therapy for my soul.

My husband and I got married in 2000.  He is my rock.  He supports me with his quirky sense of humor and his determination to get to the root of my health issues saved my life.  Together, we have rescued two dogs.  We adopted a lab mix from the SPCA and a rescued Dachshund.  In May of 2012, we moved from our first home into a new home. 

Thursday, September 12, 2013

Sorry I've been so quiet

Yes.  I am still living.  I have been quiet for a few reasons.  I have been extremely busy with some Lyme projects.  But I've also been forgetful.  I forgot my own sign in information to log into the blog!  Somehow I just happened to remember it.  Now one would think that if one had a blog since 2008 - that one would remember log in information, apparently not me.  Lyme Brain at its finest!

Since my last official update:  I've had two follow ups - some blood work - and some IV's.  After May (LDA month), I pretty much crashed in more than one way.  I pretty much didn't do much in June or July.  It was hard to explain to people that I just didn't feel like myself.  Now with Lyme Disease (and all of the co-infections:  Babesia & Bartonella), I have pushed through to feel pretty much like Jennifer - even when I feel at my worst.  So when I stopped feeling like "Jennifer,"  I began feeling pretty upset.

That's when it was decided that I needed to clear my lymph pathways - and focus on detoxification.  I've done a lot of things to focus on detoxing -

  • Supplement Lists (which will remain private)
  • Lymphatic Massage
  • Rebounding
  • Ionic Foot Bath
  • Other things that my brain isn't remembering right now.
Bottom line - I'm slowly seeing "Jennifer" return.  I still feel lousy, but there is a little more pep in my step, a little more sparkle in my eyes, a little more lift to my lips (smile) and I feel a little more "Jennifer" and a lot off "that other person"  (quote from The Avengers - when Banner is talking about The Hulk).

Since I'm feeling a bit more Jennifer - I am working solidly on Lyme Awareness in NC.  I'm planning a documentary screening of Under Our Skin in NC for October with a friend.  Getting excited and hope we have a good turn out. 

Well, I think I've worn myself out just typing all of this.  I'm sorry for the delay in blog posts.  I'll try to do better now that I've logged in.

Thursday, August 22, 2013

The Big Announcement

I really meant to post this before, but alas I failed.  I feel like one part of my life has to be put on hold while I'm doing such a huge project and unfortunately my personal blog fell to the waste.  As I said at the beginning of the month ---  I really am taking "Living the Lyme Life" to a whole new level.  In more than one way.

Yes folks - I am uniting the states with Lyme Awareness. 

Sunday, August 4, 2013

We Fight Lyme Together Bracelet Sales

Please order our We Fight Lyme Together Bracelets to help out with NC Lyme Advocacy. We are using the most current proceeds for the Vector Borne Infection Awareness Night on October 8th - If you straight up want to donate, but don't want to order the bracelets - contact me via email (located on the side of the blog) or comment with your email address and I will contact you with how to make that happen.

A portion of the proceeds will go directly to raise awareness in North Carolina.

Sizes and Quantities

Taking it to a whole new level

I really am taking "Living the Lyme Life" to a whole new level.  In more than one way. 

So I have really been neglecting my personal blog.  I apologize for that, but when you hear the reason - everyone will understand.   Unfortunately, I can't share that information on this blog at this time.  However, I'll share that it does involve Lyme Disease. 

Be patient and I will share as soon as I can, but know that I'm very busy - living the LYME life. 

Thursday, July 25, 2013

The Subtext of Life

Words.  Phrase.  Articulation. 

When words are put together, they form a sentence. 

The cat ran.

This is such a simple sentence. However, this simple sentence isn't so simple when you say it.  Inevitably, someone reads subtext into a simple sentence.  This can often vary by the person that states the phrase and the person that is listening to it. Let me give you a few examples

I say, "The cat ran."  Someone might immediately think on of the following scenarios:

  • The cat ran in the grass.
  • The cat ran in the house.
  • The cat ran from the dog
  • The cat ran during thunder.
  • The cat ran using all four paws.
  • The cat ran away from home.
When you hear the phrase, "The cat ran," you may already predisposed to think where the cat ran to or why the cat ran or even how the cat ran.  However,  I was just making a simple statement that the cat ran.  There was no sub-text into where, why or how of this statement.  However, people often jump to conclusions and imagine there is more to the sentence than there is based on past experiences.

If this simple phrase can have subtext, imagine other sentences in life.  Some people throw subtext into every day conversation with their body language.  They say one thing, but really are intending to say something else.   For me - about 9 out of 10 times, what I say is what I mean.  If I ask for someone to do something, there's no subtext to follow.  It's just a simple request.  But because so many people are used to others using subtext, they make assumptions based on my statements.  When in reality, I simply just wanted you to take the trash out - or remove a post - or whatever it was that I asked you to do.  It's as simple as that. 

Speaking of subtext - some people are going to read this and ASSUME I am talking about someone in particular - and again - you'd be incorrect.  It's not about anyone.  I was just thinking on the way home that sometimes simple sentences can be so misconstrued with subtext that the meaning gets lost in translation.

So from now on - whenever you read something - or hear something, listen.  Not just hear, but listen.  Sometimes the 5 words that comes out of the person's mouth is really just the 5 words - and not a 20 paragraph dissertation.  :)

Tuesday, July 23, 2013

Itchy Update

  • During the day was better in itchiness.  
  • Apparently still very itchy at night though.  It's woken me up three times thus far.
  • What I wouldn't give for one full night of sleep - or maybe even just one night with only waking once.
  • Redness is about the same and irritation spots about the same.  One small step. 
  • Take Diflucan number 4 tomorrow (er today) - that's typically the sweet spot number if it's a fungal infection for itchiness to completely stop

Monday, July 22, 2013

The Itching Game

The stages of an itch usually follow a pattern. 

  • There is an itch.
  • You scratch it.
  • There is relief.
 This can be true for many types of itches. However one type it itch plays hide & go seek  --

  • There is an itch.
  • You scratch it.
  • It moves.
  • You scratch it again.
  • It moves.
  • You scratch it again.
  • There is relief.
However, there is one type of itch that is quite annoying.  Annoying indeed.

  • There is an itch.
  • You scratch it.
  • It itches worse.  
  • You scratch some more.
  • It itches worse.
  • Houston, we have a problem.
This has happened to me, yet again.

First let me begin by saying I have re-occuring systemic yeast problems.  It happens and I usually realize it quickly and begin a protocol.  By looking back to 2008, it took 4 days of this protocol to help this kind of itchiness in the past.

Now there are multiple things that I think are important and some are a little bit TMI.  I'm a modest girl so I'll keep it friendly, but - I can't explain everything without explaining everything.  For my male readers - aka that's you Kaptain Blue, you might want to just want to  just go back to like 2008 and reread and old blog.  LOL.

It all began on a quiet Wednesday afternoon. I ran out of my monthly supplies on day 3.  All you ladies (and probably some gentlemen) know what I'm talking about.  So a quick trip to the store was in order.  When I arrived, I realized they had a bargain so I bought up 3 boxes of my favorite brand.  However instead of getting my regular supply, I mixed it up a bit.  I thought why not mix it up - they've had this "new" product out for a bit and I've heard great things about it.  I got home and unwrapped this pretty package of U by Kotex. I think you ladies know where I'm going with this.  It was Mistake Number One! On Wednesday afternoon, I used the product twice.

Thursday I had scheduled a lymphatic massage for detoxing.   So, I decided to shave the bikini line.  Mistake Number Two.   I must say I really enjoyed it, but boy did we find my painful spots.  By this point, I had used the product two or three more times.  By Thursday night, I felt an "itch."  I won't tell you where exactly this "itch" was located, but all you ladies know this itch - an uncomfortable itch that's inconvenient and a bit disgusting to scratch -especially in public. Upon further investigation, I discovered a small bump - like that of a bug bite on my tush.  I figured in that moment the bug bite was the cause of the itch.  There was no alarm.  Side note:  That night, I grabbed one of my original product instead of the new pretty packaging product.

I went to sleep Thursday night thinking nothing of the little itch and bump.  Boy was I wrong.  Mistake number 3.  I should have started treating that little itch & bump Thursday  night because Friday morning I woke up and I was really itchy.  I was so itchy - I decided to just leave off any extra things that might cause irritation - IE:  I knew I would have some messy under garments, but it was worth it.  See told you might be a bit TMI.

By Friday evening, I was in a pickle.  I realized that I had a lot of redness and irritation (and itching).  So I grabbed a tube of handy dandy lotrimin ultra and applied onto the skin where it was red and irritated.  Upon contact, it felt better.  I slept well - although woke frequently itching.

By Saturday, I was truly in pain.  It was an itch so bad that it hurt.  I couldn't scratch it because t hat would make it worse - If you don't know - any itch/rash area that you scratch over and over again could cause an infection if you break the skin.  And since I'm trying to avoid any antibiotics over the next 6 weeks - (have gone 2 weeks so far) I'm trying not to scratch.  I alternated using antifungal cream and neosporin on my red/raging/irritated/angry/itchy skin.  To clarify, it is just the skin that's red and fussy.  Thank God!  I began Diflucan (why I didn't on Friday - I don't know.  I'm fussing at myself about that right now! - yes at 2:50 am).

Sunday, I picked up Coconut Oil.  I've heard many good things about it.  I used it.  It was "so so" in remedy for itching - but I've also heard it's a great natural antibiotic/antifungal therapy for skin. So I've alternated the  creams around today to try to hit the rash from every angle and then it hit me -

  • The new product irritated my skin.. (probably need to add an cortisone cream in there)
  • The shaving irritated my skin more - would have been better off if I had left well enough alone during my monthly visitor.  (this is where I'm using the antibiotic cream)
  • The yeast went out of control due to a combination of - already having system yeast overgrowth in my body (with no other symptoms, I didn't realize), lymphatic massage pulling things out to the surface, and because it was already irritated due to the product & the shaving - the rash landed on a very unfortunate area of the body.  (Diflucan and Antifungal Cream - alternating with Coconut Oil)
Because of this itch - I haven't slept well since Thursday night.  I have to work today through Thursday.  First 4 day week since I quit - and most of those days are almost 8 hour days.  If my bosses were in town, I'd not go - but this week I am the boss.  I have to go.  So wish me luck as I sit down, cross my legs and hope that the itching doesn't go crazy while I'm at work. 

The redness has subsided a bit. It doesn't look quite as angry as it did on Saturday.   If past experiences tell me anything, the rash will be gone by day 4 of Diflican - which isn't until Tuesday.   However, my past rashes weren't this severe and angry before I started treating.   

Saturday, June 29, 2013

Dealing with anger

Dealing with Anger:  Anger is something we all have at one point or another.  If someone says they've never gotten angry, they're either lying or they've simply forgotten - thanks to that lovely Lyme effect of memory loss at times.  I hope that my post will help someone reading in how they deal with anger based on how I handle mine.  First I have to say that I don't get angry a lot.  I'm just not an angry person in general.  However there are a few things that press my anger buttons - So I have to know how to channel that and how to control my emotions so that I don't do something I'll regret later. 

The one thing I've found is that anger is like crinkling up a piece of paper.  You can crinkle that thing all up and not tear it, but you can not get that piece of paper to go back to its original shape even if you iron out all the wrinkles - something is left behind from the crinkling (anger).  Crinkling paper for me is a release.  So if I'm extra worried or stressed, I may take some paper and crinkle.  So if you ever come to my house and you see a stack of papers crinkled on my desk, it means I was stressed or worried.  One day a few weeks ago I crinkled a whole notepad of papers.  It was better to damage that paper than to damage a relationship.  I'm sure there are better ways to deal with it, but for me - this is something that works.    You have to find your own way  to release the tension.  For some, it's a stress ball.  For others, it's one of those worry stones.For me, it's paper.

So I have to remember 4 basic things about anger. 
  1. Anger is a human emotion.
  2. Anger hides fear.  What is the fear and deal with it.
  3. Anger can damage relationships.
  4. Resolve the problem, Dissolve the anger, and Let It Go!

Whether online or in person - I try to work through some steps with anger. 

  • Waiting it out.  This is particularly helpful online. If someone does something that makes me angry, I try to wait.   If it made me REALLY angry, I wait for a whole 24 hours before reading it again.  Because chances are, I just read what they wrote wrong. Either I read it entirely wrong because my brain wasn't working right for reading comprehension or I simply read their intentions wrong.  By waiting it out, it stopped me from reacting before I say something I might regret later.
  • Journaling - sometimes it can be helpful to make an "emotions notebook."  There can be patterns.  I know that I'm more likely to take things the wrong way around my cycle.  I try to avoid making decisions and talking to people that I know are likely to set me off during that time of the month.   
  • When responding to someone, make a negative sandwich.  That means - start with a positive and end with a positive and sandwich the negative in the middle.
  • Anger can lead to depression.  Depression is never a good place to be.  I try to never to let a day go by without a smile.  Back in 2008 or 2009, I can't remember when, I made a promise to a friend that I would smile at least once every day whether I meant it or not.  The next year, I made a promise that I'd make at least one other smile daily if I saw people that day.  It has helped tremendously and soon enough I found that I was smiling almost all the time.  It wasn't a forced effort.  Even if we're sick, we can be happy. 
  • If I *must* respond to someone that's made me angry, I try to talk it out and use "I" phrases with calm words (this means no upper case letters in an instant message).  I also try to do this privately.  There is no need to take my anger out on someone else publicly.  It makes the other person look bad, but it also makes me look bad.    9 out of 10 times things can be resolved quickly with an instant message rather than going back and forth publicly.  While hurt can dissolve, trust can never really be regained if there is public humiliation. 

True story that happened recently.  One night someone raked me over the coals publicly.  It was a few people plus a friend that didn't stand up for me.  In my opinion this happened for a couple of reasons - They were angry at their own Lyme Disease and because of that they weren't thinking clearly and took it out on me.  I think they expected me to blow up at them, instead I waited.  I cried.  I got angry quietly.  They hurt me deeply.  I wasn't sure how to respond so I waited and cried some more.  I cry when i get super angry because I don't know if I'm going to make the problem worse by responding or just letting it go. 

I finally responded in a private message to my "friend."   I simply asked why.  And in keeping it simple, we were able to resolve some conflict - which didn't even actually involve me.  What this friend didn't know is that over the past week or two I had stood up for her behind closed doors and I gave her the benefit of the doubt first.  After the public humiliation, she made me question my own philosophies of giving people the benefit of the doubt.    She crinkled up our relationship and I will never be able to fully trust her again.  She planted a seed of doubt in my mind because she actively participated in raking me over the coals.

However, I did have a responsibility to help her and the others so I took care of the problem PRIVATELY.  Apparently I'm an innate peace maker.  I want to make peace between two people so bad that I put myself in the middle of it.  The other person felt so badly that she was the trigger for the group's anger on me.  This other person is actually a very good friend of mine and never would have done anything to intentionally cause me pain. 

Many people would have exploded to the people in a public way the way that these people did about me, but I'm not many people.  It may have looked like I wasn't standing up for myself, but I was standing up for myself.  I was just doing it privately -  I never got an apology from one person, the second person is acting like something never happened and the third told me she realized the mistakes she made.  However - Anger has damaged this relationship.  It will never be the same just like the pile of note pad paper that incident caused me to ruin.     

Bottom line is - When something is upsetting you, try to take care of it privately.  Don't go out of your way to make the other person look bad because in the end you make yourself look  bad.

So remember these thing - and I highlighted the two most important things:

  1. Anger is a human emotion.
  2. Anger hides fear.  What is the fear and deal with it.
  3. Anger can damage relationships.
  4. Resolve the problem, Dissolve the anger, and Let It Go!

Friday, June 28, 2013

Babesia Sweats

Sometimes I think I have it beat - and other times - like today - I am drenched in sweat. 

Calgon take me away!

Thursday, June 27, 2013

It's back!!! (SYTYCD)

The top 20 have finally been chosen on So You Think You Can Dance

I am excited for the season after night one of couples dancing together.  I thought I'd make a list of favorite to least favorite.  I can't even say best to worst because even the ones that are in my bottom three are wonderful dancers.

My Top 3 are:
  • Amy & Fik-Shun - Sonya Contemporary Piece (see below)
  • Jasmine M & Alan - Travis Wall Blind-folded piece (see here:
  • Jasmine H & Aaron - Sonya Jazz Piece (see below)
My Middle 4 are:
  • Brittany & BluPrint - Afro Jazz
  • Makenzie & Paul - Waltz 
  • Malece & Jade - Travis Wall Jazz
  • Hayley & Curtis - Hip Hop Piece (see here:  ht=tp://
My Bottom 3 are:
  • Alexis & Nico - Hip Hop
  • Jenna & Tucker - Broadway
  • Mariah & Carlos - Jive

 Amy & Fik-Shun with Sonya Contemporary Choreography.

 Jasmine Harper & Aaron with Sonya Jazz Choreography.

Sunday, June 23, 2013

Life theories based on Dory

Sometimes I feel like Dory - photograph taken by me at the Aquarium at Fort Fisher NC
When life gets ya down,  ---------    you just have to keep on swimming.

Friday, June 21, 2013

Day Beach Trip

Kure Beach 6/20/2013

Few weeks ago decided to have a beach day with my Mom - we finally went yesterday.  We did a lot of stuff in our one day trip.   Basic itinerary for the day was - Aquarium, Lunch, Beach.

This is what we did:

  • NC Aquarium at Fort Fisher
  • Fort Fisher (and beach at that area)
  • Eat Lunch at Carolina Beach
  • Spend time on Carolina Beach Board Walk
  • Spend time sitting on the beach
  • Eat famous Britt's Doughnut.  (first for me and it was oh so yummy)
  • Spend time on Kure Beach
  • Spend about 30 minutes with one of my best elementary school friend and his wife & son.
It was a  nice day weather wise although the wind was out of control and the waves were very turbulent.  
To explain how windy it was - I was sitting in my beach chair relaxing when a gust of wind came and knocked me in the chair over.   Back of chair was on the beach - my back was on the back of the chair - the bottom of the chair was in the air - as were my feet.  It was in slow motion and all I could do was laugh.  There were witnesses, but it wasn't Mom - she had gone to the bathroom. I'm feeling it today though.  Wowzer. 

Thursday, June 13, 2013

Has it really been almost a month?

I'm so sorry it's been almost a month since my last entry.  I've been crazy tired and crazy busy.   I don't even have much to say.  I've had a lot of people come to the house for warranty items. 

I also began a new antibiotic regiment which is kindly kicking my tail.

I got a little sunburn on my shoulders, forehead and back after swimming at a birthday pool party.  And by swimming, I pretty much mean I stood in the pool for a few hours.  

I still am taking donations for bracelets - look over on the right hand side of the blog if you're interested in "ordering."  The last set of orders I used to help with the booth we had at the fairgrounds. It was a huge success.  I'm hoping to work with someone to do a screening of Under Our Skin in the fall.  So will likely use any donations for the bracelet for that endeavor. 

Friday, May 17, 2013

If I knew then, what I know now ---

If I knew then, what I know now ---  because this is a Lyme blog, you guys might think this is Lyme related in some way.  I can tie that into it, but really it has nothing to do with Lyme Disease or any other co-infections.  
 So many people say, "I wish I could go back."   They want to go back to high school.  They want to do it again - and have the same experiences they had.  Well - I can say without a doubt I  have never once thought, "I wish I could go back."  The High School me blended into the walls.  The High School me was so shy that the thought of making a presentation or talking to people outside of my own little group made me  sick in a literal way.  I hated it there.  I hated it so much that I just wanted to blend in, not stand out, get through the time until college, go away and never go back.  However - life just doesn't happen that way.  If I wanted to see my family, I'd have to go back. Over & over & over again.  If I knew then, what I know. I would have gone back more often.  That's a problem I can fix now!

Most students never get to go back to their middle or high schools after they graduate.   However, I was blessed that my Dad taught at my middle school.  I think I spent more time there or at the HS in my schooling years than I did at home. Adults got me.  They got to see glimpses of the real me.  For some reason I wasn't comfortable in my own shell, but amongst a certain group of people - I would let little glimpses of myself come out. Who am I?  I am the perfect blend of my parents.  I have the humor of my Dad with the sensibility of my Mom.  Sometimes those two sides collide and the humor sticks out and my sensibility side is going, "What on Earth are you doing?"  If I knew then, what I know now.  I'd let everyone see my sense of humor all of the time - and if they don't like it, then it's their problem not mine.

Sometimes I think we get in our own way of happiness.   Right before 7th grade, my family took a giant move.  In the grand scheme of things, it wasn't that large of a move - Truthfully from our new house to our old house - was about an hour & a half.  However, might as well been across the country.  My family chose not to go back "home" often - I'm not sure if that helped or hurt.  I almost think if I had been able to keep in contact with my friends back "home" that I would have had a little encouragement to be myself and that if people didn't like me for who I was - who needs em.  So I had it set in my own mind - that life was going to be miserable.  And it was.  If I knew then, what I know now.  Life gets better. 

Do I wish I could go back and be that miserable shell of a person?  Absolutely not.  Do I even wish I could go back and CHANGE who I was then?  Not really.  I think the "blended into the walls" Jennifer helped keep me grounded.  I have so many bad memories of the six years I lived in that county.  However over the last few years, I've come to realize that even more than that - even despite myself - I have so many great memories.  Somewhere through the misery and the tears, I found a bit of happiness things.  I may  not be in contact with every single friend I made along the way.  However, my best friend today - was one of my great friends in High School.  If we hadn't moved there then, I wouldn't have his support now. If I knew then, what I know now.  People would shock me by being better friends that I could ever imagine.

What have I been up to the last few weeks?  I have really not been blogging as much as I could have been.  There is a VERY valid reason for it.  The first reason was the Lyme Awareness Day at the Flea Market.  I already blogged about that, but the second - a few weeks ago my Mom told me that my Dad had finally decided to retire.  This surprised me, but it didn't.  He could have retired 7 years ago.  He just kept at it.  We thought he was going to retire 2 years ago, but he didn't.  So this came as a surprise, but in a way it didn't.    If I knew then, what  I know now.  I would have started really planning a year ago. 

First, I have to say I'm a planner.  I've always been a planner.  I think of about a hundred different scenarios in my head for different things. So over the last few years I've had a general list of things that I'd like to do when Dad finally retired.  However, I had a mere three weeks to put some plans into action.   The big things I wanted to do were out of my comfort zone - technology based.  Now you might think to yourself that I seem to be pretty tech savvy, but truthfully I am not.  I have come leaps and bounds in the last 15 years -however my goals were lofty.  If I knew then, what I know now. I would have started planning a year ago.

However, I pulled this off in a mere three weeks.   There were a few things that I really wanted. 

  • Power Point Presentation of Dad and his classes throughout the years.
  • A Mixed CD of songs that remind me of Dad.
  • Former students and friends coming out for a surprise party
  • The song Celebration playing when he walked through the door (there was a 2nd part to this, but unfortunately that didn't pan out).
  • And some other very important people coming to his final concert.
  • To be nicely decorated.

A Power Point Presentation:  I must say that this was one of the harder things I had to do.  First, I went through the yearbooks at the school.  Then, I had to go pick up yearbooks from his school as I realized my project would be much easier if I could bring them home.  There were no fewer than 15 yearbooks.  One by one, I looked through them and any potential pictures I scanned into my printer - which sent it over to my computer.  I saved them into a file.  It was then that I could start putting together a presentation.  I can't even tell you how many hours it took for me to get it going.  You have to keep in mind that my family wasn't tech savvy.  We didn't always have the latest and the greatest.  We just didn't care about that and it wasn't a necessity.   I only had to do a couple of presentations with power point at school and that was back in the late 90's too.  If I knew then, what I know now - I would have paid a little more attention when someone was explaining to me how to do slide transitions and timing. 

A Mixed CD of songs.  Now I do this every so often. I  thought it wasn't going to be difficult.  Boy was I wrong. I couldn't remember how to do it so it took 3 and 1/2 hours to do the first one.  Once I got to the third one, I had it down pat.  I did probably 10 mixed CD's.  This was my "last minute" project.  I had all the songs on my computer, but I just was so busy the other stuff that I put it on the back burner.  If I knew then, what I know now - I think I still would have had this on the back burner. LOL!

Former Students & Friends coming to a party.  Now this was difficult and it wasn't.  I put together an event on facebook and invited people I knew.  I sent out an email to a few special guests.  I made a phone call to an important family member.  Then let it fall into place.  Now, I actually turned his final concert into the celebration.  I had everyone come to his final concert and then we all slipped into the cafeteria afterwards and waited for him to arrive.  He had NO IDEA that this was going on.  I began to see my dream coming together when I saw all of these people that I knew in one space and knew that some of them were some of Dad's favorite students in the last 39 years.  If I knew then, what I know now - I would have done it exactly the same way!  It was small and intimate. 

The song Celebration to be playing when he walked in. Now I have to say that this was a stroke of luck.  I really didn't think it would happen.  My original idea was to have some band members play for Dad when he walked in, but that just didn't pan out.  In my mixed CD, I had it as the 2nd song.  Once I got the CD going, I was hoping that they'd walk Dad in about 5 or so minutes afterwards.  Now there was someone there that really helped me out with this.  Two people actually.  One was a friend of mine who works at Dad's school.  He actually helped me connect my computer to the projector to project it on the screen. Then there was another guy at the school that brought speakers to connect to my computer.  So once we got the speakers connected - I began to play the CD - and sure enough 1/2 way t rough Celebration - Dad walked into the door.  I couldn't have been more pleased with the way that turned out.  Again, I'd do it the same exact way (Except maybe have them hook up the speakers earlier so we could have had music playing before hand, but then again - it worked out perfectly - so maybe I needed that delay)

To be nicely decorated - Now, I am not a decorator.  To be frank, I SUCK when it comes to decorating.   However, I wanted it to be nice.  In addition, I didn't know where we'd be having the party until a few days before.  So I didn't even know how to plan for the space until the day before the party.  SO, I had a few ideas and hoped they'd come together.

  • Yellow & Blue -  I wanted it to have a yellow feel, so I purchased a roll of yellow plastic table cover and also blue steamers.
  • Balloons - I wanted a really big balloon and smaller ones.  I wanted it also to have a black & white look.  So I bought "note" balloons and black & white streamers.  
  • I bought a "Surprise" Banner.  and other random stuff including music confetti

I didn't have a plan.  I couldn't visualize it until I could actually see it.  SO, we first rolled the tables.  We rolled 18 tables to start.  6 tables were together in one row times 3 - so it was really easy to take the roll down the table.  We opened up the helium tank and began to blow up balloons.  We had 3 Mylars - so 1 Mylar for each set of 6 tables and the BIG one in the middle group of tables.  Then we had 4 musical note balloons so the big one in the middle got two music note balloons while the other two tables got one musical note balloon each.  After we got it started, I began to confetti the table with the musical note confetti.  Things were really coming together.  We had groupings of three balloons around the side of the room we had decorated.  We knew we wanted a table of memorabilia and there were two round tables.  So we table clothed them - and then my brother had the brilliant idea to use the blue  steamers around the round table.  STROKE OF GENIUS.  It really made the tables look great.  We used the one table for memories and I let my brother take care of that almost completely by himself.  Then we used the other ones for guests to sign in. 

I couldn't figure out what I wanted to do with the black & white steamers and then the kids had a great idea.  By this point one of Dad's parents - came to help with her children.  She took care of all the food.  We wound up rolling yellow cover down a 4th set of 6 tables for the food and additional seating just in case.   We put the children to work hanging the steamers in the doorway.  Suggested it look like a piano.  They went at it and began putting up the steamers.  Then after they left, my friend cut the white steamers and the black steamers straight so you could really see that the white steamers looked like the white keys and the black steamers looked like the black keys on a piano.  It was amazing!  We cut the surprise banner in two pieces and put one on one side of the projection screen and one on the other. 

All in all, it looked VERY nice.  I can't believe we pulled it off as a surprise. 

I do have a few people to thank.  The principal of Dad's school was a PHENOMENAL support. Anything I requested, he was totally on board.  I really could not have done any of it without his support.  The band parent that went out of her way to ask if she could help and bought food for the celebration.  Then she came to help decorate with her children.  We couldn't have finished in time without her help.  My friend - the teacher - that worked at the school.  There was no way I could have turned my presentation onto the big screen if it weren't for him.  And all the special guests that came out late on a school night to celebrate a school that has been home for Dad for the last 24 years.  And my family - who managed not to spill the beans.  Amazing! 

So that's what I've been doing for the last few weeks.  I really am too pooped to pop, but it was really worth it.  Time well spent.  Lack of sleep well spent.  I love my Dad. I know he knows it, but sometimes - actions speak louder than words.  :)

Sunday, May 12, 2013

The Day of Awareness in North Carolina

First I have to give a shout out to two of my friends who did awareness events in their own towns - One is a rock star of an advocate.  She not only did one day of awareness, but she did THREE days worth at the May Fest at Pilot Mountain.  I couldn't be prouder of her for doing it all on her own with her daughter.  I am sure she's one tired lady right about now.  The other friend lives in Hendersonville and she's doing an event every Saturday with other Lymies in May to raise awareness.  I have amazing Lyme friends - truly amazing.

Now, let me tell you about what we did yesterday.  I will be sharing bits and pieces on the NC Lyme Advocacy blog, but wanted to share with you all first because you're my peeps.

I have to give huge props to my Lyme friend Beth.  She not only got this thing scheduled by herself, but she did most of the posters all on her own along with all of the tr-ifolds.  Her husband and Dad came to do the big stuff including setting up tables and the tent.  They did the heavy set up between 8 and 8:30 before I arrived.  I was scheduled to arrive at 8:15, but then got stuck in traffic so wasn't able to arrive until about 8:40.  It was pushing it, but as I like to say --- it is what it is. 

I got there and somehow found my way.  I get lost easier than anyone I know.  The GPS helps in a lot of ways, but this was a "parking" and "walking" situation where I wasn't sure what the buildings were on the flea market map I had and I was terrified I was going to get lost.  However, between Beth's verbal directions and the nice flea market police officer - I found my way just fine. 

So we got set up.  Our first two volunteers showed up.  This was a wonderful sister pair that really helped us get the booth looking just right.  As we were finishing up and I was explaining to one of them exactly what I had in my "big Lyme book" and some other information - another volunteer and her husband came.  We started off slow.  No one seemed to want to take any information, but as I said - if we helped even ONE person - the day would be worth it. 

A little before 10:30, another set of three volunteers came.  A husband and wife duo with her beautiful daughter.  The wife was diagnosed very short time ago and she really jumped in with both feet for advocacy and awareness.  We are fortunate to have her on our side.  She & her husband began competing in passing out brochures.  Every time one of them passed out something - they'd comment on how they were winning the contest. 

Now I must say something about our volunteers.  They were absolutely wonderful.  I set up an excel spreadsheet with each person having about a 2 hour shift (like 9 to 11, or 10:30 to 12:30).   We had at all times between 4 to 8 volunteers.  They worked hard and they talked hard.  Everyone was on time.  Everyone showed up.  No one got really lost.  They were ALL amazing.  We had Lyme patients and supporters alike - Moms & Daughters, Sisters, husbands and wives.  It truly was a spectacular day of awareness.  In total, there were probably 19 volunteers - more if you include the Lyme friends that popped in to say hello that weren't on the volunteer list. 

I enjoyed my time with each group of volunteers differently.  One volunteer's job was strictly to remind ME to rest - even though she did so much more.  I took care of myself.  I drank plenty of fluids, ate plenty to keep me "energized" and went to the bathroom when I needed to.  I sat down when I was ready to collapse and reapplied sunscreen when I felt like I was getting a little sun.

It was windy all day.  It took a lot of gorilla tape and clear packing tape to keep our stuff in place.  One of the tri-folds only fell down once.  The forecast for  yesterday was "cloudy" and "thunderstorms."  Every now and then the sky would look ominous and once we started shuffling things around just in case it started to pour.  However - the rain stayed away.  We didn't even get a drop of rain.  

I would post pictures, but blogger seems to be having trouble with the download process so I will try again tomorrow.  As tired as I was last night and today, I am so glad we did it.  We talked to many people.  A lot were aware of Lyme, several even battled it themselves, but some had no clue what Lyme Disease was and we were able to give some education on how to properly remove a tick.

Saturday, May 11, 2013

So Neglectful, So sorry!

I'll be honest - I didn't realize it had been so long since I'd written.  I've been just a touch busy and a touch sick.   The touch busy - is that I've been so focused on NC Lyme Advocacy that I've forgotten about my personal blog.  And it wasn't until I saw Kaptain Blue (formerly known as Mr. K) today that I realized that it had been a while since I've updated the personal blog. 

A while back I was asked by a number of people to head up the North Carolina version of the World Wide Protest.  I said that I couldn't head it up because I had so much other stuff going on (with NC Lyme Advocacy & the Lyme Letter Campaign).  So I sent a message to my dear friend Beth and asked her to head it up - knowing that she was really the only one I could trust to really get it set up the way I would have done it myself.  Although we have may different approaches and personalities, our end result is generally somewhat the same. 

She agreed and has done a lot of hard work over the last few months and we settled on doing a booth at the Flea Market on the NC state fair ground.  There was so many things that could have gone wrong today - and while there were a few mishaps - all in all today went well.  I will post more in depth later about it, but for now --- here's a picture --- of me being tired - because I had been up on my feet most of the day. And yes, that is a stuffed tick. 

Saturday, April 13, 2013

My educating yard sale

I heard about a month ago that our subdivision was having a yard sale.  I don't like going to yard sales and I don't like having yard sales.  I find that it's just too much effort for little return. Although I suppose if I put out a little more effort, I might sell more.  I decided I would not do anything for the community yard sale and then I had a light bulb moment.  I saw it in my head - and thought if I helped one person - it would be worth the hassle of setting up a yard sale. 

So I got up bright and early this morning (too early for a Saturday!) and began to put together my stuff.  My stuff you ask?  Well - my LYME STUFF.  I got a table - and a chair to sit in.  I took it outside and covered it with a lime green liner - and I put out there my lime green binder with information about tick-borne illnesses in North Carolina.  Then I grabbed Lyme Disease Association brochures and a flyer I created on proper tick removal.  I grabbed about 10 shirts that are too small and 10 pants that are too small and set out to have a "yard" sale where I didn't have a goal of selling a thing and that every single person that came over would get a mini-presentation on tick removal and Lyme Disease. 

I needed my husband's help to set up the clothes - and then he brought out some "manly" things.  Again, wasn't really looking to sell anything - but if I did I did.  Now for me - yard sales are a pain because it means I'm outside - for four straight hours.  I don't like to be outdoors.  It's just downright painful for me, but we do have professionals spray our yards so I'm trusting that our yards are safe (I've not found a tick on us since we started using the professional guys). 

My goal was to educate one person and to sell nothing.  Don't you know I wound up educating 33 people and getting $45 in my Lime Green Jar - $25 of it was for my husband's things - but $20 for my Lyme Awareness Campaign.  Out of the 33 people I talked to - at least 1/2 didn't know that ticks carried bacteria or how to remove ticks properly.  Out of the other 1/2 that did know about tick borne illness, 1/2 of those were also taught the improper way to remove ticks.  So 75% of my table visitors were educated. I think I saw about 7 people that either had been diagnosed with Lyme or had a close friend or family member with Lyme and half of them had the chronic form of the disease. 

One lady said it best, "I never got a schooling at a yard sale before. Thanks for the lesson.  Keep up the good work." 

A family came over and I asked if they knew how to remove a tick if they found one.  The teenager said his Mom had "burnt one off me just yesterday."  My mouth dropped and I explained that can cause the tick to throw up in their bodies.  I think they looked like they were about to vomit.  So I sent home with them a lot of brochures and tick cards.  I even gave the guy a tick tool and showed him how to use it properly. 

So who knew - you can get an education at a yard sale.  :)

While I don't plan on doing these a lot, I found a new way to educate the public about Lyme.  If your community is having a yard sale, consider doing one - and having a table to educate your visitors about Lyme Disease and other tick borne illnesses in your area.  Set out a donation jar and someone might just pop in a dollar or two.

Wednesday, April 10, 2013


I ended my very first post like this:

"I am still trying to figure out the best way to start this so hang on as I figure out how much I want to share with the outside world. A lot of posts may be repeats of things I write on other websites. So buckle your seat belt, hold on to your seats, this is gonna be a bumpy ride."

Seems like I figured it out - because somehow - I've written 900 posts since September 6, 2008.  So many things have happened since that day.

Family Stuff:
  • My brother graduated from college.
  • My Granddaddy passed away.
Health Stuff
  • Experiemental Therapy for Lyme
  • PICC Line pulled after 7 months in.
  • Fell and hurt my wrist
  • Chelation therapy for Aluminum poisoning
  • wrote out my background story for the first time.
  • Had a mini-remission in 2010
  • Started sliding backwards in 2011 with migraines.
  • Used soft chamber hyperbaric machine.
  • Ear Growth removed
  • MRSA on my  nose.
  • Had to quit my full time job.
Friend Stuff:
  • Reconnected with friends from the past.  
  • Met a friend for the first time and watched her graduate high school
  • Went to Carolina with friends multiple times.
  • Went to Western  Carolina with friends multiple times.
  • My friend Pam died suddenly.
  • My friend Alisa's beautiful baby boy lived for 61 minutes.
  • With urging of friends, met Eric Montross (TWICE)
Advocacy Stuff
  • Congressional Meetings
  • NC Lyme Advocacy
  • Support Groups
  • began selling silicone bracelets, "We Fight Lyme Together."
Other Stuff
  • Got my hair cut - and dyed. 
  • Got a few new pair of glasses.
  • State Fair Trips
  • Beach Trips
  • New Home. 

I'm sure I'm forgetting things, but wow I've done a few things in the last 900 posts.  Thanks for reading.

Saturday, April 6, 2013

We Fight Lyme Together Bracelet Sale!

This particular offer has expired.

From now until April 15th - help out my efforts to provide awareness in North Carolina and you'll receive a bracelet.

Perk A:  Donate $10 (plus $1 to help out offset the paypal fees) receive 3 bracelets
Perk B:  Donate $15 (plus $1 to help out offset the paypal fees) receive 5 bracelets
Perk C:  Donate $25 (plus $1 to help out offset the paypal fees) receives 10 bracelets.

You can order easily this way - (it's also on the right hand side of the blog).

This offer is limited until April 15th or while supplies last.  Early morning on the 16th, this option will  no longer be available on the blog - If you make a donation -and we are out of the size you requested, I will contact you to find out if you would like the other size, wait until we have the size you requested in stock, make the donation without the perk or receive a refund.  However, if I'm getting close to running out of a size, I will make note that it is in limited supply. Size 8 inch is in limited supply. 

Thanks for your help with helping North Carolina Lyme Advocacy. 

If you feel the desire to make a monetary donation without receiving any perks, you can do that - by using paypal for your donation - send it straight to  I assure you - all the money I received from now until April 15th will be used to help us with Lyme Advocacy Awareness - whether it's for printing off flyers, brochures, other copy & print items, ribbons, booth costs and any other item that may make our booth pop on May 11th.  I can't wait to get this booth up and running and post a picture of it.  

Wednesday, April 3, 2013

Chutes and Ladders: The Game With Our Health.

I remember playing these types of games when I was in elementary school.  I loved climbing the ladders and for some strange reason even loved sliding down the slides.  I think I even added a little "wheeeeeeeeee" when I'd land on the number that forced me to slide down.

If you're not familiar with this game, each player starts just left of the number 1.  You spin the spinner.  Some people were really great with the spinner while others spun duds.  The dud spinners always cracked me up.  I was a champion spinner.  Whatever number the spinner landed on is how many spaces you would move your piece forward. If you landed on a ladder, you got to climb up.  The best most wonderful spot to land on was number 28 because it would let  you go all the way to the number 84! Amazing game - Of course the goal was to get to the number 100 before your cohorts, ahem enemies, ahem friends.

Today I went to meet up with a friend and she made the comment about how she would take a few steps forward with her health and then slide backwards.  For some reason I immediately connected that with the game Chutes and Ladders.  Of course, I wrote it down on the back of a business card to jog my memory later.  It was a bloggable moment. 

I'm sure you know where I'm going with this, but let me run with it.  :)  So when you begin your Lyme journey, you start off left of number one.  With each new medicine, you spin the spinner.  Sometimes the medicine makes you feel better and you land on a number that allows you to go up the ladder.  However sometimes you take a medicine that makes you feel worse so you land on a number that makes you go down the slide.  And just when you think you have the light at the end of the tunnel, you land on number 87 and you slide all the way back down to number 24. That's what happened to me when I began Rifampin. Well I hadn't exactly reached that close to the end of the tunnel, but saying I was on number 16 and slid down to 6 doesn't make the visual impact as 87 to 24.

Yep - Treating Lyme is like a game of Chutes and Ladders. 

Sunday, March 31, 2013

Christ Has Risen

When I was a child, my favorite "holiday" was Easter.  While most children said Christmas or their birthday, my thought was that Easter was the best thing ever! I loved the thought that someone could die and come back to life 3 days later.  I wondered if people that I loved close in life could come back after three days like Jesus did.  My thoughts were that Christmas celebrates Christ's birth, but Easter - celebrated his life, death and his rebirth.  Three things in one - Why wouldn't it be my favorite "holiday?"  As an adult, I realize that my thoughts were oversimplified, but I'm still child-like in that thought.  We get to celebrate his life, his death and know that after three days - Christ Has Risen!

How does this relate to my Lyme story? Well - over the course of the last 18 years, there have not been many times where I have asked the question, "Why me?"  Let me repeat that last part.  There have NOT been many times where I have asked the question, "Why me?"  I would say a handful at the most have I asked, "Why me?"  When I do - the answer is simple - Why NOT me?  I've always said that if my journey could change or affect one person - then it was worth every bit of my struggle.

I finally received my diagnosis a little over six years ago.  I've had my highs and I've had my lows.  Sometimes those days come on the same day.  I have made some courageous friends over the course of the past six years.  Some I already knew and some I would come to know.  Some of those friends only lasted a short season while others have lasted through the entire journey.  One thing has remained the same through my entire journey.  My faith in God.  I have no doubt that if it was His will then I would be cured, but He's not done with me yet.  He has plans for me. 

Jeremiah 29:11:  For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

Many years ago (17 years and 7 months to be exact), He gave me Lyme Disease.  He altered the course of my future, but my future was already planned.  He knew that this would be my world.  He also knew that I would not see the long term picture unless I had this thing long term.  Now I know some people won't agree with me and some will outright argue with me that God didn't give me this, but you know - I believe different.  I believe that each of us have a path that God plans out (even before we are conceived).  Controversial I know, but this is my belief. 

Over the course of the last 18 years I have been the rock to my friends with Lyme Disease.  I have helped countless people and I have stood strong when others would have crumbled.  I have over 30 Lyme friend's phone numbers in my cell phone.  Some of my Lyme friends are the best friends someone could ask for.  I'm not sure that they would have been placed in my path if I had not contracted this illness.  My Lyme advocacy efforts are high because of my degree in Social Work.  Why did I choose Social Work as a major?  When I was in the hospital the first time, the kindest person I met was the Social Worker through the duration of my stay.  I felt a kinship with her and that lead me to my major.  Those four years taking counseling, advocacy and Social Work classes helped shape me to be the person I am today. 

Plans for me were made before I was born - I believe in the hope and a future that God has planned for me. 
Why me?  The answer is simple.  I am capable of doing the advocacy and awareness work that needs to be provided for the state of North Carolina.  I am capable of discovering the people I need to surround myself in order to create the big picture.  God has a plan for me.  And I thank God that Christ has Risen!

Friday, March 22, 2013

Flustered and Overwhelmed (and a post without bullets)

I've been diagnosed with Lyme Disease for six years now.  Six years and 22 days to be exact.  It has been an extremely long time where I felt so much fluster.  I had my follow up on Tuesday and I thought it went pretty well.   I felt we discussed the good (I'm herxing from the oral antibiotics), the bad (my favorite IV nurse is leaving) and the ugly (possible picc line with IV antibiotics in our future discussion in May).  I left the office smiling and not overwhelmed.  To my regiment was one new antibiotic and another new pharmaceutical which is supposed to help with my pain.

Let me be clear - this is NOT a pain medicine, but a medicine that helps many things - one of those things just happens to help with nerve pain.  It comes with a point of pride for me that I refuse to take pharmaceutical products for pain.  In the last six months, I may have taken a total of 3 Tylenol (for headache along wiht a fever so really it was more for fever reducing than anything else).  Now before anyone gets in their high horse about Tylenol being bad for you - I don't have any other options.  The best option would be ibuprofen, but I've developed an allergy - and eye swelling allergy.  Some other things aren't options either so Tylenol it is.

I compare the new medicine to Neurontin.  Let me be clear - it is NOT Neurontin.  I've been on Neurontin before.  But I compare it to Neurontin because Neurontin is an anti-epileptic medicine.  The new medicine I believe also was initially used to treat epilepsy.  Neurontin can also be used for pain management.  In fact, when I was Neurontin over 7 years ago, it was to treat my headaches.  We chose the new one over Neurontin because I've experienced the Neurontin daze.  It doesn't make me fatigued, but it does create a fog where I feel that everyone else is going about 100 times faster than me and it makes me feel like I'm going slow as a turtle. 

In any case, I left the office feeling confident about the new plan for the next 7 weeks and was only waiting on my notes to be emailed.  Typically I take my notes with me, but my LLMD wanted to decide between two antibiotics and because the notes were so long he wanted to take the time to make sure they were right for my understanding.  So I left, happy - content - confident.

This was on Tuesday.  Fast forward to Thursday morning.  Emails from my LLMD come password protected.  This way I am the only one that knows the password to open up the notes.   Unfortunately, I had forgotten the password.  This was in some ways a blessing.  I went to work and then to a Lyme Advocacy meeting and then home where I remembered my password for the notes.  I opened them up and began to read.  I'm reading and things are clicking from the appointment.  Okay, Okay, Okay .  I understand.  And then I read in big capital letters THREE WEEKS.  This caused my heart to figuratively skip a beat and stop.  Do what?  FLUSTERED AND OVERWHELMED I tell you!

Then I kept reading - and the "Do whats?"  kept coming out of my mouth.  My eyes got large and all the sudden I felt flustered and overwhelmed.  So for the first time in about four years - I called my LLMD's office to ask for clarification about the notes. The person I needed (wanted) to talk to was busy with a patient and she offered to call me back when she could completely focus on my questions. Again, this was a blessing - I had time to read the notes fives times - and come up with a list of questions so I could stay on track when she called back.    Typically my brain is trained enough to come up with my own data sheet for my pharmaceuticals, but this time - I was completely flustered and overwhelmed.

So she scanned in and emailed the chicken scratch from my LLMD.  It helped, but yeah I'm still flustered and overwhelmed.  I pulled up a word document - and began to create a table for the next 8 weeks.  I still have work to do on it becaus I think I'm going to use an excel spreadsheet to help keep the words separated, but t his morning I woke - and looked at the list - and it took one whole sheet of paper for the morning medicines alone.  Flustered, overwhelmed, exasperated.

Soon, I'll get myself together - and tell myself to kick it in gear, but seriously.   Three new pharmaceuticals (one of which - might cause me allergic reactions because - well I didn't understand the pharmacist, but I know that I could very well get a rash all over my body because of my allergy to phenobarbital), along with all the old ones, plus 20 or so supplements - is overwhelming for anyone.  Taking a deep breathe and if you made it to the end of this post.  Bless you. 

Wednesday, March 13, 2013

Wednesday Ramblings

  • I've been following a bill that was introduced into Virginia for a while.  This bill is known as the Lyme Disease Testing Information Disclosure Bill.  Basically what it is a requirement for physicians to provide written disclosure to people who are tested for Lyme Disease regarding false negatives. You can find the information bout legislative activities on the NATCAPLYME website: Today the Governor of Virgina passed this bill into law.   Although I am not living in Virginia, I find this to be very promising for other states (including North Carolina) to be able to pass similar laws.
  • On May 17th, the Niagara Falls will turn green to commemorate Lyme Disease Awareness Month. 
  •  On the 2nd week off of antibiotics, I am finally stabilizing.  I actually felt pretty good today.  I love that feeling. I want more of it. :)  
  • I think I've been going through a writing slump lately.  I just don't know what to write about.  So bullets are the way I've been working through that.  Maybe an idea will just pop into my head.  If you all have ideas - please - encourage me.  :)

Saturday, March 9, 2013

Weekly Update

I figure if I'm going to slack off on the blog then the least I can do is post a weekly update on how I'm doing. 

  • Health - My symptoms have slacked off this week.  However, one symptom flared with a vengeance the day after I stopped my medications.  This hasn't happened in such a long time that it caught me by surprise.  I woke Monday morning with a small sore throat.  I thought nothing of it and went on my day.  The next morning I awoke at 2am with my throat so sore that I couldn't swallow.  My thoughts immediately went to strep, but with strep - I get a delirious fever.  I checked my temperature and it was normal. I got up - to find something.  My magical mystery drops. I found them and took them and only needed the first kind Tuesday to Thursday.   I'm still on the 2nd one.  I'm not sure if I've ever talked about these drops so I might as well share now in case I haven't
  •  The first bottle is called Bio Chlor Dox.   According to the manufacturer, "Bio-Chlor-Dox is a natural antibiotic that kills bacteria by supplying generous amounts of oxygen to anaerobes, which are organisms that do not require oxygen for growth and may even die in its presence. It is an effective antiviral, antibacterial and anti fungal product. By administrating Bio-Chlor-Dox, the immune system is assisted in carrying out the normal body process of defense against invading microorganisms, with little or no toxicity to normal tissues."  Basically what it means - is that this supplement provides a lot of oxygen to organisms that don't need oxygen and therefore might kill them.  Whenever I feel like I'm coming down with something, I run to this bottle of stuff.   For me, I typically do 5 drops under the tongue twice a day until I feel better.  If I catch it early enough, I can clear it up over one day.    However, in this case - I didn't take it on the first day of the sore throat so it took me three days to clear up the throat issue.  If I'm feeling especially nasty, I might bump it to 5 drops 3 times a day.  I also use it if I've been exposed to someone who is very sick.  I'm not sure if it's actually doing something or if I just think it will so it helps.  Either way, I do not care.  It helps.  
  • The second is something I take when I get specific symptoms - (sore throat, itchy throat, itchy eyes - aka allergy symptoms) - It's Quercetin drops.  It is supposed to inhibit the release of histamine (aka a natural anti-histamine)  For me, it's beneficial because I don't get drowsy.  I squeeze up a dropper full and down the hatch it goes.  I take it a couple of times a day until the histamine reaction minimizes.  I also take it if I know it's allergy season and I want a little extra boost.  The unfortunate thing is that it seems very difficult to get.  So the last few times I've ordered it, I've been sent a message saying the place I order it from is out of stock.  I keep a check and finally last week I realized it appeared the place had some.  I ordered it, they took my payment and it's on the way!  So I'm thrilled.  I can take it like I need to instead of decreasing the time I take it. 
  • Home - I've spent the last week really working on getting the house clean.  Since I had such bad back and leg pain the previous two weeks, I hadn't really done much in the terms of cleaning.  Since Wednesday was such a great day for me (minus the sore throat), I practically cleaned the entire downstairs of the house!  Fortunately, it hadn't really gotten that bad since I hadn't been able to move around much.
  • Advocacy - haven't done much on the advocacy website, but there are a few support group meetings this weekend. I'll attend one of them because the other is too far away.  Also been talking a lot with others about May Lyme Awareness Month.  We have a few ideas for May, but have to get some things in order before we can announce them.  We'd hate to announce that we were doing something and then the thing fall through the cracks. 
  • I hope everyone has a great week!

Saturday, March 2, 2013

March Update

 I have little time to focus on the personal blog since my time is so focused on the advocacy website.   However, I wanted to update everyone with my favorite format.  Random Bullets!

  • I had blood work done yesterday.  I've discussed this before, but I basically need to drink 3 liters of water (with about 2 ounces of Gatorade mixed into that 3 liters of water) in about 3 hours the morning of a blood draw in order to have a chance of a stick.  I woke at 6am and began my ritual and by 8:45, I had finished my 3 liters with 2 ounces of Gatorade.  I knew I hit my "sweet spot," when I drank a sip of water - had to urinate immediately - finished urinating - got up - drank another sip and immediately had to urinate again.  So, I packed up one more bottle of water and left. I signed in at 9:25 and walked out at 9:40.  This included, scanning my insurance and license (twice actually - gave her an old license with my old address on it and my old insurance) - and her trying to call my doctor's office to clarify what he wanted (but they were closed yesterday).  Seriously, one of the easiest blood draws I've ever had.  For one, she listened.   For two, she remembered me from the last time.
  • Symptoms:  I began to have severe leg and ankle pain as my back pain finally eased off.  Go figure that I get one of one excruciating pain and get another.  My heating pad was my friend and finally today that pain has eased to be replaced with a sore throat.  I'm sure that my voice is probably a little hoarse (an occasional symptom I get),but I haven't needed to talk today yet. 
  • Lyme Advocacy:  I must spend a few hours (3) at the minimum on advocacy and awareness things a day.  Today for example, I woke up with several things in mind and have already spend an hour and a half.  Although, I suspect I will continue off and on throughout the day. In general, I speak with at least one Lyme patient daily on the phone and at least 5 on the computer.  If I had a couple of dollars for each communication about Lyme or Lyme Awareness, I'd be able to pay for my treatments.  On occasion, I get "lymed out."  On those days, I take a respite either in the morning or the afternoon.  I rarely take a full day off from awareness. It's just too important to me.