Wednesday, June 27, 2012


I have been struggling.  Yesterday was the first day I had driven in 8 days.  Yesterday I had the shakes and had no strength.  My best friend called to ask if I'd join him for eating. In the "old" days, I would have said absolutely, thrown on some clothes and been there in 15 minutes max (5 to throw on clothes and brush my teeth and 10 to drive there).  Yesterday, it took 30 minutes.  Not really that big of a deal, but triple the time to get ready because I could barely squeeze the toothpaste onto my toothbrush.

I decided to get something simple.  The waitress brought over rolls and our drinks.  I began to tear the paper off the straw.  Correction:  I *tried* to tear the paper off the straw.  Now sometimes when I struggle at the simple tasks, I simply ask for help.  But other times, I'm so focused at the task at hand that forget that asking for help is an option. The waitress was taking our order and I'm focused on her.  Then I'm trying to get the straw out of the wrapper. I'm getting so frustrated at myself for not being able to open the straw that I try a different method when ... IT happens.  The straw finally pops out of the paper and my hand goes flying and whacks the glass over.  I had had that kind of day.  It (literally and figuratively) was almost my last straw. 

A string of "sorries" come out of my mouth as my best friends knows exactly what to say.  No harm no foul.  Neither one of us got wet (much less soaked) and we managed to keep the drink from going everywhere.  The waitress was quick in motion and I kept muttering things like, "should have stayed home,  it's been this kind of day, sorry" and I was trying to keep my tears from falling from the outside.

Waitress brought out a new glass with ... A NEW STRAW.  Seriously?  So I start to struggle with opening yet another straw and he says, "try tearing off at the end."  Now this is an easy solution and if my brain hadn't been cognitively struggling the solution would have come to me.  Two things: A.  It took me 2 or 3 minutes to tear a little piece off the end to get the straw to come through.  B:  Some people would have just taken the straw from me and opened it.  My best friend knows me better than that.  A simple solution offered was better than snatching the straw away and doing it himself. 

I've been so lonely lately that it was nice to get out and do something with anyone, but eating with my best friend is much more a comfort.  Although I was embarrassed at what happened, something like that is easier to handle with my husband or my best friend.  They have a great, "it happened now let's move on" attitude and later (much much much later) when I'm feeling much better --- it might be brought up in a humorous way. 

So yes, I'm struggling.  I've kind of forced myself back into hermit status because I don't want others to see me at a weak state.  I miss my friends and children at work (haven't worked since May 17th).  I also miss my friends and family.  I haven't really seen anyone in June other than my husband and best friend.  Of course my husband and I go out, but that's not really *seeing* people. That's us going to get what we need for the house and coming back home.  At least, we have furniture set up so I'm comfortable at the new house.  I have my choice of recliner, loveseat, couch or bed.  If I'm exhausted, I sleep. If I'm tired, I watch tv.  If I have any bit of energy at all, I try to do something in the house.  I wear my pajamas all day unless given a reason to change.  IE  Hubby comes home and needs to go to Lowe's.  Although Lowe's isn't my favorite store, lately if he goes to Lowe's I go with him because at least it gets me out of the house for a little bit.

So yes, I'm struggling.  By now I was supposed to be on 4 antibiotics.  I've only made it to 2 because I know what the next one is going to do to my body. I'm just not ready for that quite yet because I'm struggling.

Sunday, June 17, 2012

Dad Memories on Father's Day

This is a long post because I have posted one dozen of my favorite memories about my Dad!  

I thought that this year for Father's Day I would post a bunch of random memories that I have with my Dad.  When I was in elementary school, I was very much a momma's girl.  My Dad worked pretty far away so his commute was a long one. To top that off, he was a band director so that meant during marching season he was gone more than not.  However when I started middle school, he became my band director.  I also got to spend a lot of time with him traveling. I think this is when things turned around and I became very much a Daddy's girl.

1.  I'd like to start this post off with random "snow" memories that I have with my Dad.  When I was little, it snowed.  Most Dad's make snowmen and help their little girls make snow angels.  Not my Dad- my Dad made me a snow elephant.  It was and still is the coolest thing I've ever seen.  It was absolutely awesome.

2.  My parents bought me a small car the Christmas before my 2nd semester of college.  My Dad drove in his car and I drove in my car to make sure that I was safe and sound (because it was a 300 plus mile trip to college).  Well we got into our cars and started to drive away from my grandparent's house and it began to snow.  We thought it shouldn't be that bad because we hadn't heard anything about a snow system coming through. So we continued to drive.  We got to the interstate and the further we got up the mountains the worse the snow got.  I was getting very nervous. This was well before we had cell phones too.  I nearly peed my pants on that drive up the mountain.  So Dad pulled over on the side of the interstate (this was after we had seen numerous cars slide off the mountain --- yes I may be exaggerating, but I honestly remember cars slipping and sliding off the mountain!) and I slid over.  He drove us to the nearest exit and we stopped at a motel thinking that the snow would ease off at some point.  We were in the same town as my college band director so eventually Dad made a call to "Bob" and we left the hotel to spend the night with "Bob" and a college crew of students that had also gotten stuck nearby.  Now while it was scary, that was one of the funnest times of my life.  The next day we shoveled off the car and made onto college.  My college didn't actually start on time because people couldn't get there.  I got to spend 3 or so days on campus with some of my best college friends just hanging out.  It was a blast!  Don't ask me how Dad got back to his car because I don't remember!

3.  Another ice storm:  This had to have been December of 1997.  I had just started dating my husband and he had come to see me at my parent's home.  He was on his way back home when something happened to his car so he drove it back to my parent's home.  He picked up whatever part it was and started working on the car in my parent's driveway.  My Dad stood there amazed at all he could do.  Then, it started sleeting.  Rob kept on working under a tarp.  My Dad continued to stand there watching Rob work.  It was in that moment that I realized I finally was dating a man that my Dad really liked!  :}  It sleeted really bad that day and Rob had to spend the night.  It just happened to be Christmas Eve!  So Rob got to witness my Dad's "Samta" impression early in the morning.  I was so excited it was like Christmas -- oh wait, it was.  Back story:  I don't know what year it started --- but every Christmas morning Dad would walk down the hall way doing his best Ho Ho Ho to "wake" everyone up.  (as if we were really asleep!)

Riding with my Dad:

4 When I was in middle & high school, I had to ride with my Dad to go to school.  As previously mentioned, my Dad was the band director.  I went to school with him because the school was 20 minutes from our house. It wasn't my district school, but because he taught there --- I was able to attend.  I felt lucky because who else got to spend 40 minutes of uninterrupted time with their Dad as a teen? So I was learning how to play the flute (my Dad taught me!) and I would practice any chance I would get.  After all, he was my teacher and he knew how long I practiced.  I couldn't lie on the how long did you practice sheets!  Well one of the ways I'd get my time in was on the drive to and from school.  I'd roll down the window, stick my flute out the window and play.  The first year I learned Rocky Top, the 2nd worst song ever.  I played it a lot because I was worried I would mess it up for the fireman's day parade.  If I could have figured out later how to spin a flag or rifle in the car, I would have done that too!

5. On most trips when I wasn't practicing, he would plug in a tape.  This wasn't just any tape, but a musical arrangement tape by Hal Leonard.  He must have had dozens and dozens of these tapes and listen we did on the way home.

6. Another thing that happened on our way home was that we would stop by a store and pick up goodies. I typically picked up a nu-grape in a glass bottle so I could tear off the paper and some sort of pastry item such as a honey-bun.  We did this almost every day. 


Wedding related memories:

7. So when I was in elementary school, I fell off my bike. I bit through my tongue and it bled a lot.  I cried a lot. There was a terrible scar, but my parent's promised that it would get better before I got married.  Fast forward to March 27, 1999.  Rob proposed.  We went to my parent's house, but they weren't there!  I called my grandparents and found out Dad was on the golf course.  I told Granny I needed to talk to them and if they could send them home to sign my FAFSA paperwork that would be great.  Of course Granny knew that something else was up and that I wouldn't call in such a hurry if it was just FAFSA paperwork.  So she got it out of me.  My Granny was the first person I told that I was getting married. She sent them on their way later.  I told them I was disappointed because my tongue scar didn't heal and I was getting married!

8. Every wedding my family would attend - my Dad would sit nearest to me and sometime during the ceremony whisper, "Elope."  At some point when I was a little older and actually knew what eloping meant, I'd whisper back, "Can't elope."  Honestly, I can't remember how many weddings this happened.  Well, my Granny called me a few days before the rehearsal and asked if there was anything special I needed that I had not picked up yet.  I told her that I needed her to go to the grocery store and pick up a  very special fruit. So at the rehearsal, I presented Dad with a cantaloupe.  :) On the back of the wedding programs themselves, I had typed up Cantaloupe at the bottom of it.

*** a lot of Elementary school memories ***

9. My Dad put up a basketball goal.   Well, I spent a LONG time out at the basketball goal chunking basket after basket.  Missing goal after goal.  Dad came out and stood approximately where the three point line would be if there had been one and said, "If you make this goal, I'll give you ---" I *think* it was 20 bucks.  Wouldn't you know it, I shot and made that goal.  Easiest 20 bucks I ever made!

10. When I was in 5th or 6th grade, I was granted permission to choose a paint color for my room.  I chose Carolina blue!  My Dad didn't try to talk me into a more girly or neutral color.   

11.  Now, what is one thing a Dad DREADS when he finds out he's going to be the Dad of a daughter? (other than when said daughter starts to date) ---  Well, I can tell you what it would be in my house --- SLEEPOVER PARTIES!  I think it was when I turned 12 I invited 10 or so girls over to the house for a slumber party!  Dad made the best of a bad situation, "DON'T EMBARRASS ME DAD!"  He bought us plenty of food and pretty much stayed out of our way.  He came out when we needed more food or if we needed him to check outside for the pesky boys that showed up to try to scare us, but we were wise to their ways! 

12. Perhaps one of my favorite stories of all time involve me, my little brother, a video store and a car.  Dad ran into the video store to either return a movie or get a new rental.  While my lil bro & I were in the tiny car, he began to get figity.  I was fussing at him (of course) to get back in his seat when all the sudden the car started rolling backwards onto the huge busy street.  I remember screaming, lil bro was oblivious that anything was wrong and Dad came running out of the video store. He grabbed the bumper of the car and single-handedly stopped the car from rolling.

Happy Father's Day to my favorite Dad of all times!


Thursday, June 14, 2012

The Pests ---

My husband and I don't do pressure sales tactics, whether it is door to door or over the phone.  We just find them to be .. well .. pests.  They use tactics that we don't agree with to try to pressure us into a product or service that we may or may not need.  Honestly the moment I see the phone has a number I don't recognize or there is someone at the door I don't recognize, I shut down.  I get annoyed and the more they talk the more annoyed I get.  I've used many tactics to get them to stop talking before I get really annoyed, but sometimes the pests just won't go away!

Example A:  A man knocked on the door.  Strike one against him was that I had been asleep and he knocked on the door that it startled me awake.  I ignore it and he knocked again and again and again until finally I went to the door.  He asks me if I'm the "Mom" of the house.  I tell him I'm not the Mom and before I could finish my sentence (IE he wasn't listening!) he tells me he's going around to speak to all the mother's of my neighborhood to tell them about this ---- and I interrupt him.  I tell him that I am not a mother and I'm not interested in whatever it is he's trying to sell me.  He interrupts me again.  Well, can I speak to YOUR mother?  He got an eye roll at that point and I told him that my mother didn't live with me.  He interrupts me again.  Can I speak to your father?  Sigh --- it was all I could do to contain myself.  First he woke me up, then he wouldn't let me complete my sentences to let him know that I was the adult female of the household and that we did not have any children ---- I finally told him we were not interested and to please leave.  

Example B:  Another man knocked on the door. This was the same day as the first pest. In fact, this was the FOURTH person of the day to knock on my door.  I answer and surprise surprise -- it was a pest control company.  The pest control company that works with our builder on the homes in our subdivision.  To bring you up to speed, the builders of our home have this particular company come in and do the termite inspections and put these tubes inside the walls so that if we choose to use them as our pest control company --- they will put their chemicals into the tubes to eliminate the pests from our home.  On our WALK THROUGH --- not our final walk through, but our first walk through, there was a note on the door to my husband saying for us to contact them.  Well we didn't because we lost our paperwork between the walk through and the move in date.  We got another note from them, but it was addressed to another family.

So the guy shows up at our home.  I answer the door and I'm already irritated because of all the other solicitors that have called and shown up at our door. Plus, he called me by another name than my own.  When I corrected him, he told me that wasn't right ... I think I know my name!  So then he welcomes me to the neighborhood and tells me that he's the rep for our pest control company. He wants to tell me about the services they offer.  He tells me a little bit about the termite and then he starts in on the pest control.  So I am up front and tell him that we already have a pest control company and in fact, we had just had a treatment earlier in the week.  Well, he continues on and on about how wonderful his company is and how terrible it is that we didn't contact them when they sent out the letter.  He makes several ridiculous statements basically insinuating that I'm an idiot about pests, insects and TICKS.  Oh, no he didn't!

Then, I asked him what was their special tick treatment to apply to the yard, trees, pipes, baseboards, etc that they could offer and if it took care of and I listed off the top of my head 4 ticks.  Then I listed off the diseases that ticks could give and that I know all about ticks, tick borne diseases and that unless he was willing to pay off my contact for our other pest control company and pay me money for my time to listen to him ramble --- that he could leave.  His response was that they didn't have a special treatment just for fleas and ticks.  They would put stuff in the pipes in the house and that would take care of everything -- because it wouldn't get in my house. 

It was all I could do to say .. so t hen I'm not allowed to go outside since you won't be spraying special tick treatments on the grass, trees, around the house, etc.  He said, "Well not every tick carries diseases and Lyme is rare around here."  I told him .. well I must be REALLY rare because I have Lyme, Bartonella and Babesia.  I was so annoyed that we've pretty much decided we're going with another termite company even if we have to pay to have another initial spray to be done because that man was a pest!  Oh get this -- when I told him I needed to put up a no solicitation sign .. he said, "but you're my customer, I'm not soliciting."  Oh how I wish I had had a witty come back for him! 

Example C (what to do to get my business) I will say that two weeks ago (about 4 days before the annoying pest man) a couple of ladies were walking around the subdivision.  I went out to meet one of them because I was wanting to find out what their deal was.  They had been in our neighborhood all day.  She was really sweet and I sat down with her to talk.  She was from the Pest Control company we wound up going with. I actually talked with her for over an hour on the porch.  We talked about ticks, tick-borne illnesses and she left with a slew of information about Lyme Disease.  She told me that someone would come out and brush off all the spider webs from the house every visit.  She said that they would spread out this stuff on the grass on the first visit and also spray stuff around the house on the same visit. Then for free, they would come out a week or two later and spray a special flea and tick formula.  Normally the initial visit was rather expensive, but she felt so bad for me that she reduced the cost significantly.

The first guy came and did exactly what she said, but then made note that they wouldn't be back for at least a month.  I was upset about that since we had found 6 ticks in the previous week including 3 ticks the day the guy sprayed.  So I called the company and told them what I was told initially and that if they couldn't keep up their end of my contact then I'd have no choice but to cancel and get a full refund!  Money talks. The lady got me a second appointment and the other guy came today. He was extremely nice and was extremely liberal with the tick and flea spray.    He said it was formulated to kill them both on contact.  If I saw anything between now and my next treatment to call and they'd do another treatment for free. 

So now, we should be bug free -- and flea and tick free.  and -- PEST FREE.  ;) 

Wednesday, June 13, 2012

IV yesterday

I went in yesterday to get blood work.  I woke up yesterday morning thirsty.  That is never a good sign on nurse trying to find a vein day.   So I started drinking like a thirsty dog.  I arrived and did my ritual. (heating pad).  She called me over to look and look and look.  She must have looked for 20 minutes and then asked, "If you had a choice, which would you rather have --- the blood work or the IV."  Not really much a choice, but I told her I thought my LLMD really needed the blood work, so the blood work.

So, she looked some more.  I leaned over to try to get the blood pumping down my arm.  Then she said with little confidence that she was going to try this lil tiny one in my hand, on top of my hand. The one of the four veins I call "the baby IV spot."  Ya know cause most women that have babies, get an iv about there in their hand.

So she sticks and I wince.  She messes with it and tells me that I can stop squeezing (had a little ball to squeeze) that she got it.  She tries to draw the blood and nothing comes out.  Another lady comes over and hands her a syringe. She syringed out probably 6 ML's of blood which filled 1 and 1/2 vials of blood and then it stopped --- she made a quick judgement call to go ahead and start the IV and if it was enough, it was enough and if it wasn't then oh well.  She figured that if it wasn't enough, at least I got an IV out of that painful stick. And if it was enough, then I got both!

It's been a while since an IV site was sore the entire IV time.  I need to keep an eye on it to make sure there are no issues over the next few days.  It was bruised pretty badly last night, but this morning it looks better.  So whenever I get this particular IV (it's a Vitamin C plus other things bag), I feel like I smell.  terrible.  Some people say that I don't smell at all while others say they can smell what I'm talking about, but that it's not as bad as I think it is.  I don't know if those people are just being nice or if it really isn't as bad as I think it is.  Hopefully my friends would tell me if I really smelled bad.  Showering and bathing doesn't help.   I still smell afterwards (to me anyways).

I kind of joke now that there are no strangers just friends I haven't met yet.  Made two new friends yesterday.   Both fairly beginning in their stories of diagnosis.  I've been where they are.  They asked me if I was any better now than I was at the beginning.  In some ways, I'm the same.  In other ways, I'm much better.  Some symptoms I had at the beginning are gone.  I haven't had them in over four years.  While others are back after taking a 3 year hiatus.  But the way I view things has changed so in that way I'm much better.  It is what it is and I'm doing what I can to help myself.  I trust my doc completely and know that he & I work in a collaborative way. 

Monday, June 11, 2012


Sometimes it is hard to be in a good mood when I'm in pain.  :(  I hate that. I'd much rather be in a cheerful great mood. 

sheets of rain bring sheets of pain.

It rained.  A lot.  That caused major pain.

Been bracing my wrist the past few days.  I need to brace my ankle & knee. 

I hurt more and more. 

Guess the Mepron is doing it's job, but I don't like it very much. 


I have been thinking lately about people that come and go into our lives.  I have several friends that are going through a difficult time lately.  My friend Sarah is having her decompression surgery at the end of the month. She had a fundraiser and amazing people donated to help her family pay for the surgery.   My friend Tricia (that had the double lung transplant 4 years ago) is having rejection and is back in the hospital. She's making the most of a bad situation and is much more graceful than I could be in the same situation.    One of my best college friends had his children taken away from him for over a month.  I told him that the truth would come out and that he would get his kids back  Finally, the truth came out and he is getting them back.

I have friends that I have forgotten.  Not because I wanted to, but because their time in the season of my life ended.  With all the seizures I had in the mid-90's, I lost a lot of my friendship memories.  Some of them are coming back and some I suspect will be lost unless someone can help jog my memory.  In the process of packing and unpacking --- I found something.  One Valentine's Day I was given a box of chocolate.  In that box starting middle school and to my first semester of college, I put things in that meant something to me.  Mostly letters or post cards or something.

I saw the box and opened some of them and thought, "WHY on earth did I keep that?" Although I do remember how I felt when I got some of those letters and they will probably remain in the little box --- I saw a card.  I vaguely remembered the card and opened it up to read the note.  What's funny is that I think I needed this note today.  I woke up this morning in a terrible mood.  I felt like I couldn't accomplish anything and was getting frustrated.

I decided I would open up one box and see what was inside.  This one box had my small box inside.  I opened the small box and went through the layers of stuff.  I hid this box in a special place in my room in high school.  I grabbed the card and opened it up and read the message.  "Jennifer, I love you.  You keep your head up, no matter how much you don't want to!  You can do it Jennifer.  Use your own self determination.  You have plenty of it.  You just have to tap into it.  My prayers and my love are with you.  Smile. :)  Freda."  At the top of the card, it says, "After the rain, the moon rises like a pearl."

I have scrambled my brain to remember Freda.  I honestly can not put a single picture to her name.  I am hoping that someone else from my past can help me remember her.  The only thing I might can think is that maybe she was in one of my first semester college classes or on my hall.  She's on of the many people that came into my life at just the right moment and here she is possibly 17 years later impacting my life again and her words moved me to tears. 

Dear Freda,

Although I can't remember you or things we did together, I remember how you made me feel.  I would like to thank you so very much for writing words that would impact me at 19 and again at 36.

Jennifer (or as you must have called me --- Shorty -  see that's the other thing, not that many people do I allow to give me nicknames, much less write them --- so that tells me you must have been really special in my life for me to keep the note past the nickname you wrote at the top)

Tuesday, June 5, 2012


This morning I woke up and had the feeling.  I don't get this feeling very often and I hate feeling this way.  It's not the physical pain (which was off the chart for about 6 hours), but the emotional pain.  I hate lying in bed, holding my head, crying and wishing I weren't in a place where I *hate*  it.  I try to be so positive and more or less inspirational and when I feel so badly that all I can do is huddle up into a ball while holding my head I don't feel positive.  I hate that feeling.  It's in that moment that I either want people surrounding me or I just want to be alone.  There is no in between.  This morning I wanted people around me.  I wanted someone there to hold my head or my hand and tell me that I was just going to be okay. I wanted someone to say that the herxheimer reaction wouldn't last forever and that no matter what I was going through that it would end. 

So I crouched into a ball and held my own head with one hand while clutching to my mouth with the other as I coughed.  Every cough brought pain.  I cried.  I prayed.  I answered a phone call from my best friend.  On one hand, I didn't want to talk on the phone.  But on the other hand, I knew his words would make me feel better.  Apparently, I am a Tough-a-lup-ugus, Toughalupugus indeed. 

I decided not to take my antibiotics this morning.  I didn't want anything else dying inside my body, but tonight --- I will go back to Mepron & Zithromax and do some more killing because I am a Toughalupugus.  In a week, I have found 6 ticks.  One on my husband, two on my dog and three dead in our sunroom (apparently hitched a ride on Dexter's back --- and Dexter's back killed them because he had been treated).  We hired a pest control company to come in and granulate the yard and spray the house.  They'll come back in a little over a week to do a special flea & tick treatment and hopefully we'll have the house done enough so that maybe they can come inside to check to insure we don't have a problem inside the house. 

Monday, June 4, 2012

Getting there

Yesterday, we focused on two rooms.  The laundry room and the dining room. 

The first time we walked into our new house, I knew of one huge change we had to make.  The laundry room had only one shelf.  My old tiny little closet of a laundry room had three shelves so I knew one of the first "additions" we would make would be to add shelving into the room.  So my husband worked on it for three hours yesterday. He's almost finished with the main portion.  We haven't decided how we want the washers and dryers yet (close side by side or spaced apart with the space in the middle).  If we move it all the way over to the left of the room, then there is enough room on the right hand side for the vacuum which was my preference.  However, it doesn't look symmetrical which annoys us.  So we'll play around with it for a while until we decide which way we want it.  He also has to putty up the holes for the old shelf and repaint.  We may have to lower the shelves a bit. It will take some time to decide.

Also while we were at Target yesterday, we saw a rust colored curtain.  So we picked up one (knowing if we picked up four that we'd hate them and have to return them, but if we picked up only one we'd love them and need to go pick up 3 more) and brought it back home.  Brought them home and saw that they really did match well.  In addition, it really matches our plates!

We went to Lowe's to return some blinds that didn't match.  We had picked them up on clearance and while they had the same color written on the outside --- the color had variance which did not work at all.  So we returned them.  While we were there, we picked up curtain rods to hang up our new curtains.  Then we glanced down the lighting aisle.  We really weren't going to pick up any new lights for the dining room quite yet and were quite conflicted with the selection. We were about to leave when we saw it ---- the light fixture we saw a few weeks ago, but the price was outrageous and we couldn't see spending that much money on a light fixture. 

We happened to look and realized that it was now on clearance and was in our we can afford price range. My husband put it together last night and will attempt to hang it tonight.  Then, I can't wait to get art work on the wall.  We're trying to decide whether to take our corner piece somewhere to get someone to refinish it.  I love love love the piece, but it still smells after weeks of cleaning it.  So I think we need to take it somewhere to get them to strip and refinish it.  We have to research it. 

Also, our refrigerator finally arrived.  We have to go to the grocery store because we lost all of our refrigerated food in the move.  I'm very happy with our new home.  We'll get everything in it's place eventually.

Sunday, June 3, 2012

Lyme Myths and Misconceptions

I received an email about a month ago from Wego in regards to Lyme Myths and Misconceptions.   It was shortly after I started my new email for the Lyme Blog so I will be honest, I thought it was a scam.  At first, I didn't reply.  However, I decided to email the lady to find out how she located me and after I was satisfied it wasn't a scam --- I responded. 

I received an email yesterday with the link to the blog they wrote dispelling the top 4 myths in regards to Lyme.  Kenneth, Jenny & I were apparently the three she corresponded with in regards to the Lyme Myths. 

Without further ado:  The Blog Setting the Record Straight regarding Lyme Disease.

Friday, June 1, 2012

Dose 1 of Mepron

One of the co-infections that ticks can give is called Babesia.  Some call it Babesiosis.  I call it a pain in my sweat glands.  Until recently, we didn't think Babesia was a problem.  Then, we realized Babesia was one of the many cocktail of things that the tick gave to me.  As soon as my hero said the words, I knew the word to follow would be Mepron. 

I've been scared of Mepron since about day 56 (just chose random day near the beginning) of my treatment.  I knew a woman that was on it.  She called it yellow paint.  To show you what it looks like, I did a google image search. 

I  do not know how my body is going to react, but I am terrified of this yellow medicine.   I was to start today.  I typically plan a start date and if a medicine worries me --- I wait and wait and wait.  BUT, my symptoms have been so bad lately that I knew waiting was not an option.  So --- today --- 15 minutes ago actually, I took my first 5 ML's of YELLOW PAINT. 

Honest Opinion:  Initial taste wasn't as bad as I thought it was going to be. The aftertaste packed a punch, but not nearly as bad as Zithromax.  With Mepron, we are supposed to eat FATTY foods.  So I ate pizza (hello fatty foods!) and after I took my 5ML dose -- I  ate a peanut bar.  The remainder of the taste isn't in my mouth anymore.  Now I just wait and see.  At least I got the first dose out of the way, but that doesn't mean I'm not still scared. 

The Under Our Skin Viewing

Our viewing was amazing.

First in the middle of April, I was at a support group meeting.  Now I have NEVER been to one in the entire five years I have been diagnosed.  However, my friend Pete runs one and I decided to go to support him.  While we were there, we talked about Advocacy for May.  I mentioned that I had the community rights to show the film in public and we moved forward with our plans to host a screening.  A close friend of Pete's and advisor helped us set up a room to hold the viewing at NC State.

We worked together all month long to get set up for the screening.   We arrived to the building and were worried about the door to the classroom being locked.  Then --- it happened. The door to the building was locked.  We joked about how many Lymies does it take to get in the building.  I started looking for the advisor's (and campus security) phone number while Pete went around the building to find an open door.  He found one!  The door to the classroom was still open!  Yah!

We set up our tables.  One as soon as people walked in the door of the class for a sign in sheet and raffle tickets.  Then, another full of raffle prizes donated by various people and businesses.  The advisor sent really cool cookies with Lime Green frosting.  Yes, we were naughty and ate them! In fact, a lot of people were naughty and ate them.  My friend Beth ate three!

Once we felt we had a comfortable number and there would only be a few stragglers, we introduced ourselves briefly and began the documentary.  Now this documentary gives me several emotions.  My emotions ran the gambit last night.   I once had to get up in the middle of the documentary to stand out in the hallway and let them loose.

We had a total of between 40 and 45 people.  Some had Lyme, some didn't.  Some were family members of friends with Lyme that were unable to attend because of their health. They were their to support their family.  That is just so awesome.  I met four friends for the first time that I've never been able to meet in person bringing my Lyme friends in person total up to like 30!

My hero, my LLMD, was at the screening last night.  It was easy to see that I was his favorite.  My friend took a picture of us hugging and you could see the look on his face --- pure pride beaming.  Words can not express what he's done for me the last five years.  I cry to think about where I was five years ago and even though I've relapsed --- he refuses to let me hit rock bottom.  We're fighting these beasts together.

And together, my Lyme friends and I will continue to create events like last night to raise awareness.  I am really scared to start my new journey with treatment of Babesia.  I rarely cry about my condition, but last night as I was watching Mandy & Dana --- as I saw them in a place I've been --- and I place I'm avoiding going again --- I had to step out and let my emotions overwhelm me for a moment.  I like to present myself with strength and confidence in front of people.  What is really funny is that in high school and college I absolutely HATED standing  up in front of people.  In fact, I hated it so much that for 8 years everytime I had to speak in front of people --- that I literally got sick after the fact (sometimes DURING the fact, which was embarrassing). I think the reason I'm uncomfortable is because I don't know where to look.  Last night, I had so many friends in the audience that it was easy to pick a friendly face and smile because I knew that a smile would be returned. My friend Carey brought a camera to take photos last night and some of the photos were priceless.  Once I get my card reader found, I will some of my photos with you as well.

Here are SOME of my Lyme friends. Yes, we all live in North Carolina.  Yes, we all have Lyme (well except one lady is a wife of a Lyme patient).  Yes, we all look good.  This is one of my favorite pictures from the night.  I hate that my friend Beth wasn't in the photo.  I searched for her, but couldn't locate her.  She was hiding I guess. 

The joy I felt in my heart last night for the new people that I met and for old friends I haven't seen in a while can't be compared to anything.  The sadness in knowing that we shared a common bond of Lyme also can't be compared.  Thank you all for standing by Pete and me as we undertook this event. I am really proud of us.  Many people say, "I want to do ---" and it never gets done.  Pete & I took the bull by the horns and ran.