Wednesday, June 27, 2012

Struggling

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

Pain

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. 


Friends

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

Tough-a-Lup-agus

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.  

http://blog.wegohealth.com/2012/05/31/setting-the-record-straight-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. 

 





Thursday, May 31, 2012

The Day is Here

https://www.facebook.com/events/280186425407923/

Tonight is the screening of Under Our Skin in Raleigh North Carolina

We will be hosting a screening from 6 to 8:30 tonight in Park Shops room 210 which is located at 101 Current Drive, Raleigh NC.  Parking in the SAS Lot is free after 5pm and there is a map on the facebook event page. 

We will be having a raffle for $2 per ticket and a question & answer session afterwards with a Lyme Literate Doctor (my personal hero). 

Please consider coming.  

After a month plus of planning, calling, texting and breathing --- it has finally arrived.

Hopefully pictures will be posted shortly (I have GOT to find my card reader)

Wednesday, May 30, 2012

Day of plans

Tropical Storm Beryl is barreling its way into our lives via the way of rain.  There is a down pour out there and I don't like to drive in the rain.  However, I have a day of plans and I won't let a little Beryl of rain stop me.

First stop.  My friend's house to watch American Idol Finale because in the move, I totally missed it because we didn't have our dish set up yet.
 
Second stop.  Lawyer's office to sign on my portion of the deed.  Our old house is being sold today. 

Third stop.  Back home to meet up with a Lyme friend. 

I might get rained on.  I might get soaked.  However, it WILL be a great day. 

Tuesday, May 29, 2012

IV Day

I have a love hate relationship with IV days.  I hate having to get stuck (twice).  Today was a two stick kind of day.

However, I love the company.  I got there and met two new friends (everyone is a friend --- I know no strangers, just friends I haven't met yet).  I talked and talked the entire IV.  Usually I fall asleep around the 2 hour mark, but today --- because I haven't been able to be around any people over the last few weeks, I talked and talked and talked.  We all commiserated over our Lyme life.

I invited them all to the screening on Thursday.

I stayed and talked after my IV was through.  Today it took exactly 3 hours.  Usually it takes longer.  So I was pleased about that.  I know I was dehydrated because usually I have to go to the bathroom 3 or 4 times during my IV.  Today, I didn't have to go at all.  I only went once during the entire time I was there and that was about 30 minutes after I finished with the IV and I've only gone once since I've returned home.  That's what Zith does to me.

On another note ---

Tomorrow is going to be a crazy day.  First hanging out with Friend A, then going to the lawyers to sign for our house being sold and then hanging out with Friend B.  So pumped about tomorrow.  Then Thursday night, we have the screening for the documentary Under Our Skin.  Pumped about that too.  Very excited.  Then, Friday --- I start Mepron.  Scared, very scared.  Will live though.

Well, I'm tired.  I'm taking Zith and hitting the bed.

The Zithromax Beginning

So as you all know, I was feeling rather unwell this past week.   I went to Target Pharmacy to pick up my Zithromax on the 24th.  This should not have been a problem as I had gone in on the 22nd to make sure they had the medications that I would be filling on the 1st.  They assured me that they did and even if they didn't have for a full fill -- that they would have enough for a partial fill. 

So when I started feeling extra crummy and then extremely crummy on the 23rd and 24th, I marched into Target that afternoon with full intention of picking up Zithromax.  I tell them what I want and head on to shop around when all the sudden I hear, "Would Jennifer ______ come to the pharmacy.?" 

Now as much as I'm in Target (at least once or twice a week), I have NEVER heard an over announcement for anything.   My hubby & I looked at each other and one of us said, "That can't be good."  We made a bee line for the pharmacy and the pharmacist made her way over.  She explained that they didn't have it  right now.   It took every ounce of me not to cry, scream, cough or vomit.  Yeah have I mentioned that by this point I was coughing so hard that I was vomiting?  NOT COOL. 

I asked for a simple partial fill (knowing that is a typical response to my medication fills and that if they had enough for a partial fill, they would have done so).  They simply didn't have enough in the milligrams prescribed to even send me home for a dose much less 3 days.  I took a deep breath and was told to come back the next day. It was that night that I got sick --- really sick --- if I had started the antibiotics earlier, I wouldn't have gotten that sick sick. 

I picked up the next day.  That visit also made me mad and I kind of showed it a bit.  They had it you see --- and the last time I was on Zithromax, they sent me home with bottles to mix myself.  The thing about liquid antibiotics is that they expire very quickly.  They expire within 10 days of mixing them.  So they mixed for the first 10 days and send me home with the rest of the month and explained how to mix them to my husband.  Then said I could come back if I had any problems.

Well ---- they decided they couldn't do that!  (Now goodness if I were on a 5 days on 2 days off repeat regiment, I'd be royally screwed)  So they send me home with my 10 day supply and told me I had to come back for the second part and then the third part. Well we are in and out of target enough that it shouldn't be a problem, but I told them that if they gave away my medication to someone else, there would be a huge problem.They showed me my 2nd and 3rd bags and assured me that I would have my medications on time without missing any.

Well I start a new medication (another liquid antibiotic) and if I also have to go in every 10 days for that one ---- and the 10 days are different than the Zithromax, I'm going to be hot!  Because not only do I have to call a day or two before hand (which is at day 8), they can't mix them until I arrive at the store.

How on earth am I going to remember to do that for three different medications?  that would be 9 phone calls on day "8, 16, 24" and pick ups on day 10, 20 and 30. That's visiting Target Pharmacy 9 days out of the month that I'm dealing with target pharmacy when I *could* be mixing it up my own and only having to go to.  18 out of 30 (31) days of dealing with pharmacy.  That doesn't include the 4th one of Doxy so drop in an extra phone call and pick up.  20 out of 30 days.  Seriously.  Just give me my powder and let me mix it.  The directions are ON THE BOX. 

Hit bottle on counter top to mix up powder
Add 15 ML of water.
Shake well
Put in Fridge.

I think I can do that!  Seriously.  I've done it before.  Many Many times and then the Zithromax is fresh every 2 days. I remember having this problem at the very beginning of my treatments and by the end oft he first month, they were so annoyed with me --- well they realized how many times I was there in the month) that they suggested me taking home the powder to mix myself. 

*sigh*

I think I'm just worried about taking Mepron and I'm taking it out on the Zithromax. 

PS. I'm getting an IV today.  while I'm on my monthly and while I"ve been sick.  My veins are probably going to be shot.  I avoid IV's during "that time of the month" because my veins are always worse.  But I wasn't thinking when I scheduled it.

PPS.  Under Our Skin Screening is on Thursday and I'm so excited.  I hope that my cough is gone and that my voice is back.  Yes, I've had laryngitis. 

Monday, May 28, 2012

To Remember

Today is not a day about sales or cookouts or hanging out.

Today is a day to remember.

To remember those we've lost who have paid the ultimate price for our freedom.

I know the widow of one such man.


I never got to meet Daniel.  However, I knew his wife.  She was one of the best friends of my best friend's sister. She was one of my Dad's favorite students, if there are such a things as favorite students.  She fell in love with a guy and they got married in July of 09.  Then in February, they received the call that Daniel had been killed over in Iraq.  He was only days from his scheduled R&R leave.

So today --- let's remember our North Carolina hero.  Cpl Daniel T. O'Leary.



And please also remember my friend from middle & high school today.  He is over seas fighting for our country.  Every time he leaves, I'm worried until he returns.  This time he lost a few buddies in his unit just about a month ago.  So pray for my friend Kenneth.  One of my first friends when we moved and his family has a special place in my heart.

Sunday, May 27, 2012

The one about the Massager

My husband and I went shopping a few years ago.  I sat in this chair that had a back massage mat.  I was in heaven.  It massaged the back and the shoulders and had heat. I sat in the chair every time we went to the store.  It was much too expensive so we never picked one up.  He surprised me with this beauty on Christmas that year.  Our old house was not set up appropriately for me to use the back massage seat.  I used it once and sadly it was too cumbersome for me to use it again.


Fast forward 2 and 1/2 years.  We move to the new house and yesterday we went on the hunt for a computer chair.  In our old home, my computer was set up in front of the futon (that we used as our couch).  Our need for a computer chair for me was non existent.  We went into an office store and I tried out a few chairs, but all of them were way out of our price range.  Then I sat in one that screamed my name.  It was dark brown for one and had a tall back and was comfortable.  There was no price tag.  In general if we have to ask, it's too much.

Sales associate pops over after a bit (after hearing us chuckle about the UGLY white computer chair with bright chrome accents) and we ask him how much it was.  It was just the right price!  So we brought that bad boy home.  Afterwards, we went to our old house and picked up the massage mat.  *sigh*  Oh the joy.  I have been using that bad boy off and on all day.

It can massage the back.  You can choose the lower back, upper back or both.  You can choose a rolling  or a shiatsu motion.You can vary the width in which it rolls.  Then there is a shoulder option.  You can adjust the height of the shoulder massage so it hits in just the right spot.  Then, there is the heat option.  You can choose to use the heat or not.  There is also a "Demo" button so it will do a variety of things.

Perfect for the after move soreness.

Saturday, May 26, 2012

Out with the old and in with the new

This morning I sit here waiting,  waiting for my husband and his best friend and son to return with our old stuff from our old house.  I sit here waiting for them together to finally clear out our old house and old shed to bring here to our new house.  The next time I go to the old house, it will be empty.  The home we created there will be gone.  Dings of our presence will remain until the new owner paints and re-carpets. 

Our new house is becoming home.  In fact, it was home the first day we walked in before we even knew what the inside looked like.  As soon as we parked, I said to myself, "This is our home."  As we walked through the door to hear the realtor say, "Come on in," I very quietly uttered, "This is our home."  As the realtor left to let someone else in another house down the street, we perused the first floor.  I said quite audibly ---- This is it.  This is our home.

We were able to check out each room and I could almost envision how  wanted each room to look.  We have now been here a full week.  We are taking it one room at a time leaving the majority of our stuff in the garage.  Our big "project" is in the Master Bathroom.  We replaced the light fixtures in their already.  Next on our list is something we have in hands already are the outlet covers, outlets and switches.  We want them to be dark to match the cabinets.  If they are going to stand out, they might as well stand out in a really awesome way instead of a, "Oh those are really ugly standard white outlets."

The thing on want list is a new towel bar, hand towel bar, robe hook and a toilet paper holder.  The total price on all four things is about $90 so we will wait for another pay check to come in before we bite the bullet and order them on Amazon.  Then, we need a light fixture to match.  We haven't decided on that light fixture yet.  We didn't realize it, but the builder put brushed nickel for almost everything, but in this one bathroom ... they used a bronze light.  Now we love the look of bronze, but we've decided to keep the look of brushed nickel in the master bathroom.  We may just switch out the light for one of the lights upstairs for now, but we may just leave it until we can purchase the right light. Why do the work twice?

***

Out with the old washer and in with the new.

So for about five years, I have been itching to get a new washer and dryer.  However ours were working "Just fine" so I couldn't really justify getting what I wanted.  Well when we decided to buy the new home and sell our old one, we justified the new purchase.  Why bring our old ratty 14 year old set with us when we could buy exactly what I wanted.



LET ME TELL YOU ---- I LOVE THEM! They arrived Thursday morning.  The washer is REALLY neato.  It has a clear lid on top so you can see your clothes being washed!  I watched laundry Thursday morning in lieu of television (OH yeah that's right we didn't have television or internet yet at that point!). 


Now this set of machines --- are $1200 a piece!  You think I paid that?  Well, we *knew* based on many many sales associates telling us that they would be on a great sale on Memorial Day Weekend.  We also knew that we could wait a week to do laundry after moving in so we waited.  We were told that the sale would start Thursday.  I knew that the old sale was set to expire on Tuesday.  So on a whim, I got online and found out on Wednesday that they were already on sale for $890!  Then, we had a coupon! My friends.  We bought each for only 800 each (which is about 200 dollars lower than we typically can find them on sale)!  Now yes, we could have gotten less expensive set --- however, these are a set that I have been itching for since they came out on the shelf and that pretty gray color is to die for! And in case you are wondering, unfortunately you can't watch the clothes tumble.  The glass is two dark to see through.  Bummer, but the clothes dry MUCH faster than my old machine.  One load would have taken me 90 minutes to dry at least in the old machine.  The new machine ---- 37 minutes!

I LOVE THEM!

Out with the old and in with the new!


Friday, May 25, 2012

Feeling Unwell

On top of the side effects of Lyme Disease and Co-infections, I am sick.  I'm not sure what ailment plagues me this week.  I keep getting different things.  If I had to put a name to it, I'd either say I have a case of Influenza, Sinus Infection or the dreaded Mono (I was exposed a week ago).

Yesterday was awful.  Two days ago, I would have sworn it was mono. Yesterday morning, I was sore it was a sinus infection.  By last night, I'm sure I have some strain of influenza.  Who knows what I have, all I know is that my fever is finally gone.

I've pretty much been on Tylenol since Monday due to pain so until I stopped taking it due to the pain going away, I didn't have a fever. Well yesterday afternoon the fever hit and it hit hard.  Every hour it went up a full degree.  By the end of my favorite show (SYTYCD -- which is back yeah!), my temp had reached 101.6 and by midnight it was almost 103. This was even with Tylenol.  I finally fell asleep at some point and when I woke up this morning, I felt cool.  My temp was back down to 98.6 (which is still high for me, but compared to 102.5, I'll take it!).

House progress:

We removed the two undesirable light fixtures in the master bathroom and replaced them with pretty ones courtesy of Lowe's.    Now instead of two -two light fixtures, we have two  three light fixtures.  And, it matches our beach theme.  We had one of these at our old house, except we only used one 4 light fixture. 

We tried to buy a new ceiling fan for our bedroom and our general theory is to go big or go home so when we saw a 70 inch ceiling fan --- in our general style we bought it.  Welllllllllllllllllllllllllll   It would have worked, but there were several things we didn't like about it so we decided to take it back to the store.  Oh well.  What we have works for now.

We found four great blinds in the clearance section that we loved so we brought them home.  We pulled them out and two didn't have brackets and the other two didn't match in color.  Fantastic.  So we took the two without brackets back and found two more of the blinds we wanted at the other location.  We brought those home and finally had a matching set.  So we now have beautiful blinds in my office.  I jokingly call it my Lyme Advocacy Office.

The blinds kind of look like this (courtesy of lowe's website):


Next thing on our list is to replace the covers in the bathroom with some bronze colored covers and brown decorative switches & outlets.

Our goal is to make this house a home and not just a place we rest our heads at night. 

Tuesday, May 22, 2012

The Big Move (and #800)

I call it the big move, but not because of the distance.  I *know* God had a hand in every single aspect of our move.  From the very first moment we walked into the house to the moment I put the very first key in the very first lost ---  God had a hand in it all.

I absolutely do not like change.  I think change is horrible and I avoid it at all cost, even if it means I'm miserable.  So every single time my husband mentioned moving, I quickly changed the subject and kept on going.  I knew deep in my soul that me *wanting* to physically pack up every single item in our home and uproot it to another home would have to have divine intervention.

And God spoke very clearly the moment I walked into the home for the first time.  It couldn't have been clearer even though there was no big flashing sign written on the walls.  Not only did the financial aspect fall into place much quicker than anyone anticipated (honestly we were told when we first asked that August was the absolute earliest and there was no way that a spring move in date would be an option), but everything fell into place.  We took a chance by packing up 20 or so boxes before we even got the pre-finance approval.

Friday, I signed the paperwork and then I drove back to our old house to make a few phone calls.  After all, we needed power and utilities to be transferred in our name.  Then, I drove over to the new house.  In order to unlock the doors, I had to place 6 keys in each lock, lock & unlock several times each.  There were 6 locks, 6 keys for a total of 36 key turns (but times that by 3 because each one had to be done 3 times). 

Then I brought in some boxes.  My friend, Beth, came over to give me something, but she stayed to help unpack a few boxes.  Honestly, the first day was a blur.

The next morning, I woke in a world of pain.  To be honest, I'm still in a world of pain.  But I will push through.

My husband and I went out to eat breakfast bright and early and picked up some biscuits for our early morning helpers. We were expecting quite a crew and we decided that my high school friend Jeff & I would return to the new house to unpack the boxes my husband and I had brought over the night before.  Jeff arrived bright & early at 8:15 and off we went.  We had been unpacking for about 30 minutes wehn my husband sent word that no one had arrived to help.  Not a single person.  This was very unlike the two people that had said they would be there at 8:30 at the latest.  We were worried.  Shortly there after a neighbor came to help.  Then, we received the call for us to come back home because our friends still had not arrived (found out later, they thought we were moving in June).

Jeff & I trucked our way back to the house and began to unload.  We were hopeful to return back to the house sometime by 12:30 to 1.  My parents showed up around that time with pizza.  We all enjoyed the food and got to work unloading the truck.  Then while we were unloading, my husband and our neighbor Mike went to get the rest of the big stuff from the house.

At some point during the day, my husband brings over an envelope.  To say this envelope was a gift would be an understatement.  I had been given some furniture from my Grandfather shortly before he passed away.  We had cleaned this furniture a multitude of times when we got it, but somehow something was in the dresser that we had never seen.  I have no doubt it was God's intervention letting us know that everything was going to be alright.

In the envelope were pictures that my Great Uncle had sent my Grandfather.  There were 4 altogether and a letter.  3 of them were copies of pictures from the 1920's and 1940's and one was from 1984.  It was amazing to say the least and they were in perfect condition.  I cried. Of course.

Then, another surprise.  My friend painted me something spectacular.  She's an artist and I had asked her if she would paint me something special. What she came up with was so extraordinary, but --- I had not noticed that on the back she had written something just for me.  That made me cry too.  Of course.

Until today, I pretty much didn't stop.  Moving, moving, cleaning, moving, cleaning, moving.  I decided today was a "me" day so I spent 4 hours with a friend of mine.  It was nice to sit in a house without boxes. ;)

I still don't have internet, but managed to find a space to write a blog because I didn't want to forget the little moments of God's intervention for me.  If I had seen my friend's inscription on another day, it wouldn't have had the same meaning.

On a side note.  Please pray for me.  I am not feeling so well.  In fact, today I do feel down right awful.  I was hoping it was just that I had been doing too much and needed a down time day, but I feel quite feverish and unwell.  I begin my antibiotic regiment on June 1st.  Mepron is one of those.  I think Babesia is starting to kick my tail feathers and it's time that I start plucking those tail feathers one at a time.

Ps too ... found a tick on my husband yesterday morning, yes the Lyme kind of tick.  Fortunately he's on Doxy for pnuemnonia so hopefully it will kick out any infections the tick might have had.

PPS:  This was my 800th post!