15 years ago

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

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

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

** to be continued **

Beat the Bite 5K

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

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

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

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

PS.  You will see this post again before October. 

Carolina Beach Trip 2

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

One of multiple waves! 

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

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

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

Carolina Beach Trip

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

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

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

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

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

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

Under Our Skin Screening Addendum

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

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

These are the cookies that Mindy left for us.  

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

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

 

 A view of the audience. 

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

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

After the screening, Pete & I spoke.  

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

Under Fire

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

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

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

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

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

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

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

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

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

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

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

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

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

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

*** This was posted on Lyme Aware:

Local 5K for Lyme Diseae!

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

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

Register for participation here at Beat the Bite.

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

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

***

Under Fire Preview Part 2

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

**

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

To be Continued *** 

Preamble to Under Fire

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


Under Fire:

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

*** to be continued ***

Upcoming Post

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

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

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

The Phenomenal Closet Part 2

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

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

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


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


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

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

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

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

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

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

 

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

  

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

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

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

Assortment of Laundry

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

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

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

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

Thankful Post

Things I am thankful for this morning.

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

Tackling The Bonus Room.

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

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

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

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

headache free

Health Update:

So I've now been on the new detox supplements for over a week.  After being off the antibiotics for two full weeks and on the detox supplements for 5 days, my headache decreased significantly.  I woke up this morning headache free.  Actually, I woke up clear headed and with a little bit of energy (I think this is due to the different kind of b12 I've been taking).  It's a spray.  The energy makes me feel better over all. 

I am still having pain in different muscles and bones, but at least for today my head feels better.


Home Update:

So I decided to make use of my energy spurt  this morning and do some things around the house.  I focused on the downstairs so I'd feel accomplished when I was finished.  Plus the items I did downstairs were easy accomplished in 5 minutes or less each.  I finished one task, rested some and the moved on to my next task.  It's my goal to always keep the downstairs area looking tidy so that if I were to have guests (neighbors, family or friends) come by that I wouldn't feel the need to "have" to clean.  We need to really work on the upstairs, but I am taking it one thing at a time. 

• My Office - Straightened
• Guest Bathroom Downstairs - I cleaned the toilet and sink.
• Dining Room - Straightened
• Kitchen - Straightened (and cleaned the stove top)
• Living Room - Straightened
• Master Bedroom - Straightened.
• Master Bathroom - cleaned toilet and sinks.  

I love my new house.  It's so relaxing and comfortable.  

Fun (I left the house) Update:

• On Wednesday, I did an informal observation at friend's school.  She was appreciative of my input and has already implemented several suggestions.
• On Thursday, I had my hair trimmed and styled. 

Fun through the pain

I decided this past week that I needed to have a little fun through the pain.  I was invited to three different things this past week.  Against better judgement, I decided that I would do all three things.  So this post is to remind myself that I can have a little fun throughout the pain.

•   On this upcoming Monday, a church is opening up a child care center.  My friend, Jamie, is going to be the director of the center and this past Monday she invited me to come to her open house and to go out to eat with her.  My responses to these kinds of things are generally "Thanks, but I just can't."  So my response to her was, "I think I can make that."  I wasn't sure if i would or not, but I really wanted to go to support my friend.  So I did.  I arrived good and early so that if I had to cut out early at least I had a chance to see Jamie.  I wound up staying the entire open house and going out to eat with a few of our mutual friends afterwards  I am so glad I did because it enabled me to "meet" a new person that was from my small little town.  I spoke about this happy accident on my post on Tuesday.  

• On several occasions, I have been invited to a fellow Lymie's house.  I really am not fond of going to other people's homes.  I generally can't make myself comfortable there so I avoid it at all costs.  I hate to ask certain questions to find out if I'll be comfortable (such as, "Does anyone in your home smoke?") at their home so am typically unpleasantly surprised when I walk into their home and it reeks of cigarettes.  Well this particular Lymie lives about 10 minutes from me and has invited me over several times.  So on Thursday, I decided to go over.  I stayed about 5 hours (which is a life time for me at someone else's home).  We talked a lot of Lyme Disease.  It was fun for her as she had never met in person anyone with Lyme.  

• Then on Monday morning, I received a text from my new neighbor inviting me over to come hang with "the ladies" on Friday night.  I simply replied that I may not be feeling up to it (which was true), but that I may pop in for a few minutes to say hello.  That would give me an easy out if I wasn't feeling well and an easy pop in and pop out excuse as well.  However, when I popped in -- I began to enjoy the company so much I pretty much stayed the whole time.  There were chairs for me to sit in, we gambled a bit - hey it wasn't my money and I won the fake game twice.  But when it came to the actual game where someone got to take the pot of money -- I lost.  I was runner up to the woman that never wins anything so that was fine.  Everyone had 5 dollars.  My neighbor supplied most of the dollar bills. There were three dice.  On each dice there was either a circle, star, the word LEFT or the word RIGHT.  If you had at least 3 dollars, you rolled all 3 dice.  Each dice told you what to do.  Circle meant you put a dollar in the middle.  LEFT meant pass to the person on your left.  RIGHT meant pass to the person on your right.  STAR meant you kept everything you had.  The winner of the money in the middle was the person who had the last dollar.  It was a simple game and cognitively I was able to play.  I was so thankful that there were no actual card games being played because my brain function wasn't there enough to play something more difficult than pass to the middle, left or right.  

 I knew that I might forget this fun week so I wanted to keep a journal of it so that later when I say I never have any fun at all that I would remember these three evenings of fun. It was also so very sweet all of all three ladies to remember me when they had something fun.  Honestly, most people don't even invite me places anymore because they know most of the time I can't go.  So it's nice to be remembered.  

House Update

Things are going very slow around the house.  It's difficult for me to do much, but I try to do one thing in the house every day so that the every day life mess doesn't start to creep up in the house.  Today, I want to try to sweep off the back & front porch and side walk.  I'm not sure if I'll get it done, but it is something I'd really like to accomplish today.  I've already swept off 1/2 of the back porch so that is better than nothing. 


We had several warranty items that needed fixing and this was the week for that.  On Monday, we had a guy come look at our tub.  It was really rough feeling and apparently was supposed to be smooth.  It wasn't in our warranty, but our builder took a look and got someone to come out to smooth it out.  On Tuesday, we had a guy come look at our kitchen faucet.  The hot water was coming out at 1/2 speed the cold.  It wasn't like this in any other sink in the house. Plus the part that holds on the sprayer broken into thirds so he looked at that too.  He fixed both problems at the same time. 

Then Thursday, we had the flooring guy come.  He was to look at the vinyl in the master bathroom, the carpet nails and an area of loose carpeting we had near the fire place.  They had only told him there were a few nails sticking up and about the vinyl.  If by a few nails, they meant every single nail was popping through at every threshold and we had to be careful walking in our bare feet into every room of the house or we'd get popped with a sharp nail -- then year, there were a "few."  LOL. 


He fixed the vinyl in the bathroom and I showed him the issue with the thresholds.  He called his boss because he was told it was only a few nails here and there, not every threshold, against the walls and all the way up the stairs.  His boss is supposed to send someone else to fix the majority of it, but he was very kind and tacked down the nails in the threshold in my office and the living room and around the fire place.  He even fixed the loose carpet around the fireplace.  He said at least I wouldn't have to worry bout stepping on sharp things between those two rooms (which is where I spend most of my time), but because the builder won't pay the vinyl guy for the time he spent on the carpet - his boss was going to send a carpet specialist to take care of the rest of our carpet issues.  I think he just felt bad for us especially when he sat down on the carpet by the fireplace, put his hand down and got a sharp metal piece into his own hand. 

In addition to those things, there was a small hole in the concrete in our driveway.  The builder came by himself to fix that Thursday and said he would send someone to take care of the broken brick on the side of our house on  Friday. 

We do have a pest control company to take care of the ticks and various other pests.  We don't have a various other pest problem, but the tick issue was terrible at this house.  They come out quarterly, but if we notice anything in between visits, we can call and have them come out to retreat for no charge.  The past week or two I've noticed some ants on the back porch so I called and they will come out on Saturday to treat for them. 

Day 2 of Detoxification

Day 1 I took exactly what I was supposed to take, no more and no less.  I felt a little more clear headed by the end of the night, but my headache was still there.  I was asked how my headaches feel.  I'll do my best to describe them. 

Honestly, my headaches change through out the day.  Sometimes it feels like someone has taken a child's belt and put it around the circumference of my head and tightened it.  Then, when it can tighten no more -- they tighten it down one more notch.  Other times it feels like someone is taking a blunted object and shoving into my brain.  Most of the time the shoving pain is on the left hemisphere, but it has lately turned into a frontal lobe pain.  I can have sharp pain, dull pain, a pulsating pain, a pressure pain.  Sometimes they happen all at the same time and when this happens I start to see shapes similar to what you would see if someone had taken flash photography over and over again.  

I am not a pain medicine kind of woman. The only time I've taken true pain medication (IE narcotics) is when I had surgery and it was pretty much forced on me.  Even then, I would take it for the day of the surgery and maybe the day after and then switch to something else because I just don't like the idea of narcotics. Also, I am sensitive to over the counter pain relievers.  I used to take either Motrin or Tylenol (both children's versions too because if I take adult strength then it knocks me out), but the most recent times I've taken Motrin I've had a reaction that has gotten worse.  Therefore, I can pretty much only taken children's tylenol.  I *only* take it when I have the all over, different types of brain aches, pain and need something to try to take the edge off.  I knew I was having a problem with pain when I took it three days in a row.  That's when I stopped all my antibiotics.  I thought by going off of them for 4 days the pain would ease off.  It didn't.  That's why we started the new plan for now. 

Day 2

So anyways.  This morning I got up and started day 2.  I had originally planned to only increase the dosage of 3 of the items, but decided to go ahead and up my dosage on a few other items as well.  Things that stayed the same as yesterday I marked with "same as yesterday"  I have a long way to go before the first three items are at the dosage I'm supposed to be taking.  (depending on how I take it - under the tongue - 10 drops or in water 30 drops)

This is what my morning supplements looked like:

• Cerebromax (2 drops x twice daily)
• Spinalmax (2 drops x twice daily)
• Matrix Support (2 drops x twice daily)
• Tox Ease GL (full dropper x twice daily) - same as yesterday
• Solray D Spray (2 sprays x twice daily) 
• Methyl B12 Spray (1 spray x twice daily - same as yesterday
• Lymph 2 (full dropper x twice daily - well before other supplements)
• Hawthorn Intrinsic (full dropper x twice daily)
• Vitamin C (1 gram AM, 2 grams PM)
• Multivitamin (2 x twice daily)

Tonight I'll do the above and add the Vitamin B

Since I increased the dosage of so many items (6), I won't add anything new today. 

This morning I woke up with stabbing pain in frontal lobe and a numb sensation in my right hemisphere.  I do feel more clear headed this morning (IE, I could think of the words hemisphere and circumference without having to do a lot of googling to figure out the words I wanted to use). 

____

Avoidance

I typically avoid writing about specific supplements that I take.  I do this for one of two reasons.  I don't want anyone to think that they should self treat with the over the counter supplements that have been prescribed to me by my doctor for very specific reasons.  Also, I do this to protect myself. 

However in order to help myself heal and get through the process, I have decided to do what I never do.  I am going to share about the supplements I'll be taking.  Now one thing you must realize is that I am *VERY* sensitive to supplements and medications.  I always thought this was due to my very low weight, but now that I am in the normal weight range - the sensitivity continues.  So, I rarely start off where I need to.  Example was when I was on LDN.  The typical amount of LDN for patients was in the 4.5mg area.  I had to start off at 1/2 mg.  I finally got up to 3mg, but I was never able to stabilize there. So in the end, I stopped LDN because I never could reach the dosage that my immune system needed.

A lot of people use "pill containers" for their daily doses.  However, I use mostly homeopathics in dropper form so those pill containers don't do squat for me.  So what I do is work out an excel spreadsheet.  At the top of the sheet, I list Sunday through Saturday.  I list them twice.  One for AM and one for PM. One sheet of paper is my week's worth of supplements/medication.  Then on the left side of the paper, I list all of the supplements/medications.  I make sure that there is an outline for each little box so that when it prints off I am able to easily check off the box for that particular supplement on that particular day.  If am I dosing up --- for example:  1 drop on Monday, 2 drops on Tuesday, 3 drops on Wednesday -- then I mark how many drops for that box so that I know when I grab that bottle --- exactly what my dosage is.

Right now I have 23 items listed on the left.  However to start, I won't use all 23 items.  In fact, last night I only used 6 items.  This morning I only used 10 items. Some of the times I won't be using for another few weeks, but I wanted them on my excel spreadsheet already.  Some things on the list won't be taken on the same day.  Example is that the first 3 items on the list will be taken on day 1,2,3 of the week and the second 3 items on the list will be taken on day 4,5,6 and 7.  Some items I only take once a day (like the Vitamin B because it makes me nauseated and I can fall asleep before it makes my stomach turn).  Some items I don't even have at home yet.  Some items I know exactly what they are for and some I have no clue.

All of the items on my list:

• Cerebromax
• Spinalmax
• Matrix Support
• Detox 1
• Detox 2
• Detox 3
• Tox Ease GL
• Solray D Spray (has Vitamin D and K)
• Methyl B12 Spray 
• Lymph 2 
• Hawthorn Intrinsic
• Scrofulara Intrinsic
• Lapacho Intrinsic
• Probiotic
• Vitamin C
• Vitamin B
• MultiVitamin
• BAB 1
• CLA-K
• Whey Protein
• Vitamin E
• Mepron
• Zithromax

The items I started last night/this morning and I marked which ones were NEW overall and which ones were NEW formulas for me and which ones I've been on before:

• New: Cerebromax - started at 1 drop x twice daily - on Thursday, Fridays and Saturdays only
• New: Spinalmax - started at 1 drop x twice daily on Thursday, Fridays and Saturdays only.
• New: Matrix Support - started at 1 drop x twice daily on Thursdays, Fridays and Saturdays only.
• Old: Tox Ease GL - FULL DROPPER (this is not new to me) x twice daily
• New Formula: Solray D Spray (has Vitamin D and K) - started at 1 spray x twice daily
• New Formula: Methyl B12 Spray  - started at 1 spray x twice daily
• Old: Lymph 2  - FULL DROPPER (this is not new to me) x twice daily
• Old: Hawthorn Intrinsic - 1/2 dropper (not new, but body is not ready for full dropper) x twice daily
• Old: Vitamin C - start at 1 Gram x twice daily, but will ramp up quickly b.c it's not new x twice (might get up to three times a day) daily
• Old: Vitamin B - 2 at bed time
• Old:  MultiVitamin - 1 am, 2 at bedtime 

The Lymph 2 MUST be taken away from food and other supplements.  So I must take that one as soon as I wake up and about 20 minutes before bed and other supplements. 

I will be slowly moving up in dosage on the first three items and also slowly adding in some other items next week.  However, today, tomorrow and Saturday I will focus strictly on these 11 items and increasing the first three things by one drop per dosage per day (IE by Saturday I hope to be taking 3 drops x twice daily).  It's hard to know what are side effects from herxing, detoxing and simply the supplements not agreeing with me.  I am to add one at a time and every few days add a new one.  Last night I started 2 new formulas and this morning I started 3 new things (they must be taken together).  The rest of the stuff I've taken before which is why I started off with 11 things today. 

I really need this to work.  I'm in a great deal of pain. 

Confirmation

I had my follow up today.  I was pretty much bluntly honest.  I haven't had a good health day since before my last visit. Someone asked me what were my symptoms since getting out of remission.  What aren't my symptoms?  Well, here is a list of symptoms that I have endured over the last month.

• Headaches
• Neck Pain
• Shoulder Pain
• Elbow Pain
• Finger/Hand Joint Pain
• Hip Pain
• Knee/Shin Pain
• Ankle Pain
• Feet Pain
• Leg Pain
• Lower Back Pain
• Itching (mainly on face or arms, though occasionally on legs)
• Sneezing
• Comprehension difficulty (understanding what people say - especially on the phone, but I've noticed lately that I've even had trouble understanding things that I normally comprehend)
• Chills
• Sweats
• Fatigue
• Twitching (mainly head/arms/hands, but feet/legs occasionally)
• Breathing difficulty (sometimes can't get a deep breath) 
• Coughing
• Fevers
• Light Sensitivity
• Noise Sensitivity
• Ear Pulsing
• Lung/Side Pain

The worst symptoms that affect my overall daily experience are the neck pain, headaches and fatigue.  Although all of the other pain things can affect how it impacts my daily life. 

I haven't been on any "killer" medications or homeopathics in 6 days.  I thought that by today my body would have stabilized, but that has not been the case. So over the next few weeks I will be working on some things that hopefully will help release the toxin load in my body to help my body stabilize. Then, I will slowly add in the "killer" things focusing mainly on Babesia. So I will restart only two antibiotics:  Zithromax & Mepron.  Omnicef and Doxy will stay on the back-burner for now.  We briefly talked about IVs, but we'll push those out again simply due to financial restraints. I will take one day at a time.   I admit it.  I am overwhelmed. When I think about how well I was doing 2 or 3 years ago, I get extremely upset. 

Small World, Big Memories

Yesterday, I had the pleasure of supporting a friend.  I met this friend in January of this year.  We have the same non-Lyme passion of early childhood education.  I knew God had big plans for her from the very first day we met.  Long story short, she's the director of a new child care center that's faith based.  They haven't had their first official day, but yesterday was open house.  She asked me a few weeks ago if I would be interested in coming up and having dinner afterwards with our former professor (now friend).  I typically say I probably can and then health reasons lead me to cancel.  I said I probably could and waited for the other shoe to drop.  Although I didn't feel my best, I put on my big girl britches (yes I said britches) and drove out to the boondocks (yes I said boondocks) to see my friend get her groove on at her open house. 

When I meet new people for the first time, I can be awkwardly shy.  I'm not sure if they notice and it maybe that I only feel awkward on the inside. This was going to be a night of awkwardly shy.  I knew it, but I also knew that I would at least know two people there and once you get to know me good luck getting me to be quiet if I'm feeling chatty.  I was there for quite some time and had spoken with the associate pastor several times.   At one point, we were alone in the hallway and he asked me where I was from.  Well, the funny thing around here is that most people are "from" somewhere else.  So I simply use my two word answer, "North Carolina."  He said he realized that, but where in North Carolina. 

It's at this point I have to really dig down and think.  It was obvious he knew I wasn't from the county I live in (those born and raised here in this county have a most definitive accent), but what do I say because it's kind of a story.  Well, I decided to be honest because well I was in a church and I was speaking to a pastor.  So I blurt out that I'm from ( J - - - - - - ) until I moved to ( O - - - - -) and then I went to Western Carolina and finally moved to where I live now.   Well the first town I list, no one ever knows where that is.  Ever.  Most people have it confused with another town which is much much bigger, but then he said something about it being near the border.  I was impressed with his knowledge of my little tiny town. 

I'm not sure if I've ever shared, but I have these dreams.  I can dream about something and it either has happened or will happen.  Not every dream comes true, but some do.  It's very strange.  Some are very specific (like the time I dreamed that I met my friend from childhood as an adult - I hadn't seen him since we were children - yet in my dream I could see exactly what he looked like as an adult - then when I saw him and it wasn't a planned meeting, I knew it was him because our happenstance meeting happened exactly like my dream).  I can go months and months without dreaming about people from J - - - - - - and then I'll dream about it for a week at a time. 

Back to my story.  A little bit after I told him a little bit of my story, I left him to talk to my friend.  We're hanging out when all the sudden the pastor walks in with another lady and her child and says that we need to connect.  Most of the time when this happens, it's about Lyme Disease.  He knew about my Lyme Disease and I was just assuming that maybe this lady was needing some information.  I was already thinking in my head about whether I had any advocacy stuff in my car when he said something about how we needed to connect because we were both from "J - - - - - -."  Honestly my first thought was that she was probably from the "other town" because people get *that* confused.   

I introduce myself and tell her my maiden name and she tells me hers.  Well her name sounded familiar in a way that I knew we probably knew her, but that we weren't close friends at the time simply because our ages were different (4 years in elementary school is a huge difference). We started talking about the area.  It was awesome.  Even though we didn't get to talk very long, it was nice knowing someone that knew all the areas I remembered. I explained where I used to live and she knew exactly the house I was talking about.  I told her my friends and she knew most of their names.

I think we are shaped largely by where we spend our youth.  Some of my most vivid memories come from the time when I lived in J - - - - - -.  I missed it so much when we moved so I would relive things in my head every night before I went to sleep.  I would say my friend's names over and over again so I wouldn't forget.  As an adult, I remember the weirdest things.  I remember the really really really long metal slide at the church.  Now I will tell you that I thought I was just thinking it was extremely long because of my size and things as adults often look tiny in comparison to what you remember, but I mentioned this slide recently to someone and they too commented on it's extreme length when I said I remembered the metal slide at the church.  I remember sliding down this slide in my blue snowflake dress and getting rust on my dress.  I remember eating pancakes on Sundays at church and once they were running out and my friend (who was a boy, but not my boyfriend) gave me his pancake because I wanted another one.  I remember taking communion on the 5th Sunday of a month.  I remember being shocked when they allowed me to be an acolyte and actually carry a flame down the aisle and light a candle.

I remember the fun summer of swimming.  I remember my favorite pink bathing suit which was a two piece.  I remember walking from the pool to the store across the street to pick up candy (Now & Laters, Fun Dip, Razzles, Boston Baked Beans, Pop Rocks, Big League Chew, etc. and my brother loved to get Atomic Fireballs).  I remember having to sit on the side of the pool once every hour.  The lifeguards said it was  necessary, but I thought it was because the adults wanted some adult pool time without us kids in the way.  I remember being scared to dive off the board.  I remember really only doing it twice in my entire life.  The last time was such an mortifying moment that I have refused to dive or jump in a pool since.  I remember the basic instinct of trust.  All of my friend's moms were my extra moms.  I remember eating the best banana pudding on the planet from a restaurant that I can't remember.  I remember HUGE trees.  These things were massive and I would love to know if they were truly as massive as I remember. 

I have a wish.  I would love for all of my old friends to be in one place and for all of us to get together as adults.  I've seen a lot of them in the last few years, but I haven't seen all of them.  Now I'm not naive, I know we aren't 10 to 12 anymore.  I know people have changed.  I would like to think that if I had stayed there that we would have all stayed best friends through high school.  I realize now that we got the best of each other before the drama of hormones and influx of new friends at middle school.   However, it would be nice to create new memories with them instead of the images I have in my head of all of us being 10 to 12.

Re-introducing myself to all of you

This is taken from bits and pieces of old blogs and plus some new information.  I want to reintroduce myself to all of you for all the new readers. I began this blog entitled Living the Lyme Life in September of 2008.  I had already been in treatment for Lyme for 18 months and wish that I had begun the blog earlier. Although if I had started the blog earlier, the name would have been titled:  Living a symptom filled day with no actual diagnosis life. Quite a mouth full.


My name is Jennifer and this is my blog.  I began the fight of my life in 1995.  I wrote specifically on the years between 1995 and 2007 on a blog entry entitled Jennifer's Background Story.  This was specifically about when my fight began and the doctors I saw.  It talks about some of my experiences and also my experience the first time I saw my Lyme Literate Doctor. Since my Lyme diagnosis in 2007, I've dabbled in other diagnoses too. I've had mineral deficiency, progesterone deficiency, heavy metal toxicity, multiple co-infections, anemia and multiple other health issues. My PICC Line was inserted into my right arm in July 2008 and I battled keeping it safe daily until February 2009.  Thanks to my wonderful nurses, doctors, insertion team and my husband, I was able to keep my line much longer than I should have.  I used it right up until the night before it was finally pulled and based on how it looked when we pulled it, it probably should have been pulled a few months prior. 

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

I tried Low Dose Naltraxone and while it has worked for others, it gave me terrible headaches.  We finally gave up.  I also used a lot of hyperbaric therapy. I feel it worked really well on some of my symptoms (especially my headaches and fatigue), but due to financial struggles I stopped going as much as I was.  I've utilized a variety of homeopathic remedies and still use some of them even today, but a few months ago I began a new oral antibiotic regiment.  I am supposed to be on four different antibiotics, but I am only able to tolerate three of the four.  My doctor and I will make a call here shortly about whether or not I am in need of another PICC line to use for supplemental and antibiotic therapies.  This worries me, but if I have to undergo this again I feel that I am a little better prepared. 

Currently, I feel that about 90 percent of my life revolves around my Lyme symptom. It stinks, but I live with it.  My husband and I got married in April of 2000.  He is my rock.  He supports me with his quirky sense of humor.  His determination to get to the root of my health issues saved my life.  Together we have rescued dogs.  We have an adopted lab mix from the SPCA and a rescued Dachshund.  We recently moved from our first home into a new home.  Back in December of 2011, I quit my position at a child care center.  It took me a while to do this and I struggled with the decision.  However after my two weeks notice was over, my boss offered me a substitute position and I go in every  now and then to help out. It gives me a little therapy for the soul.  

Sitting here

My head hurts so badly that I can see colors of pink and green.   I'm trying to push through the pain because I feel guilty for just sitting here day after day.  I shouldn't feel guilty.  I have this disease that no person (without Lyme) could understand.    So today, I am pushing through the pain.  I started with one load of laundry.  I simply hung up a load of my husband's shirts.  Then I pushed myself to wash and dry and fold a load of towels.  Then I pushed myself again to wash and dry and put away another load of laundry. Now, I wash sheets and blankets that have been sitting in a dirty clothes bin since May.   My goal today is to simply get through all of the laundry in the house.  I want to be able to look at the bottom of every single laundry basket including the load of shirts that I want to hang dry instead of putting them in the dryer. I'm getting there, but I hurt.  I hurt so badly that I just want to cry.  I want to crawl into the bed and cover my head in hopes to stop the pain, but that won't help.  So I sit here doing what will help.  The laundry.  It will make me feel better to get to the bottom of the baskets. I sit here. I don't remember the last day I didn't have some sort of headache. 

Update

Health:  I've been having a difficult time the past few weeks.  I am on three oral antibiotics (Omnicef, Mepron and Zithromax).  I attempted to start the fourth one (Doxycycline), but I began vomiting with that one.  I think it's the combination of the four that did me in.   I've had a multiple of symptoms over the last two weeks.  They vary in severity.   I've had a lot of pain.  I've experienced headaches as well as pain in my neck, shoulders, arms, hands, lower back, legs, knees, feet, lung and side.   I've experienced some twitching, chills, sweats, fatigue and breathing difficulty.  I've also experienced occasional sneezing, nausea and itching. 

One of my most frustrating symptoms, other than the pain, is with comprehension. I had slowly realized it was happening, but a few weeks ago I was talking with my friend on the phone.  I realized that I had no idea what he was saying.  I couldn't comprehend him at all.  I was too embarrassed to tell him I couldn't understand his words or their meanings so I changed the subject and rushed him off the phone.  Comprehension is better in person, but phone calls lately have been brutal. It's not all the time and it's not just one or two people.  When it happens, it's frustrating.  It is what it is, but it doesn't mean I want it to continue happening. 

Home:  We've not made any new changes to the house since the last update.  I've used our upright steamer to straighten out a couple of curtains.  I'll eventually get them all done, but it is taking forever because my stamina isn't holding up. 

Very Quiet

I've been very quiet this month, mostly because I just simply didn't have much to say.  So here's an update.  Health, Work and Home.

It's hard for me to be so extra positive when I feel so extra terrible.  In June, I worked ZERO days.  I barely left the house by myself.  In fact, I may have only left the house by myself once (maybe twice) in June.  July has been a little different.  I've worked twice and left the house by myself several times, but it's because I've forced myself to. 

The antibiotics are doing a number on me.  I'm on three of them currently.  Supposed to be four, but haven't found the courage to take the one that I know will kick me down. I *will* start the fourth one this week because I want to have been on that one at least 4 weeks before I see the doctor again. 

I'm on a multitude of pharmaceuticals. I'm on a multitude of integrative supplements (herbal remedies and vitamins).  Some I've been on before and some are new.

I mentioned that we had living room furniture, but didn't mention what we purchased etc.  Maybe one of these days I'll write a post about our furniture karma. 

We're settling into our new home.  I absolutely love it.  Downstairs is looking pretty phenomenal actually.  I have room for company to come spend the day.  I rarely have company, but it's nice that they'll have a place to sit now.  Originally we were going to buy whatever it was we wanted for living room furniture.  We were going to be cautious and not extravagant, but we weren't going to get cheapy cheap furniture either.  At our old house, we had a futon.  -- a futon.  you know in lieu of a couch.  a FUTON.  which was not comfortable for sitting or for sleeping.

We looked online at the big stores in Raleigh (so that we wouldn't have to go in person unless we found something we wanted to sit in) and visited smaller furniture stores in our area.  Then one day while we were waiting for a friend to arrive at a restaurant (we had called a friend to meet us out to eat and it was going to take longer for him to get there than us -), we stopped by Big Lots.  We go to Big Lots on occasion, but honestly we rarely actually buy anything from Big Lots.  So we strolled aisle by aisle and then hit the furniture section.  We saw a few, "actually those aren't bad" pieces and got word that friend had arrived at the restaurant.  We went back to Big Lots four times before deciding we'd go ahead and buy three pieces.  One Couch, One Loveseat and One Recliner for less the price we would have spent on one couch. 

So I've already found "my spot" (ala Sheldon Cooper).  I pretty much only sit (or lay down) in the left hand side of the couch.  Occasionally, I move to the recliner. 

Here it is.  There is room behind the couch - we have the fish tank (which is huge and pretty, but unused at the moment) . The side table there and ottoman are temporary placements.  We aren't sure where they'll go, but for now that's where they stay.  It gives me a place for my drinks and food when I'm in my spot.  I love love love the color of the curtains and the color of the chair.  Speaking of colors - so the chairs LOOK black, but they also look brown.  It's the most bizarre thing.  When the curtains and blinds are open, it looks brown.  (for the reference, I wanted brown -- brown dark brown brown - but we chose these because the only brown  -- brown dark brown brown Big Lots had were not comfortable, this set was comfortable)

First Photo:  Foreground:  Living Room showing the Peacock color chair and the peacock color curtains and the recliner.  Background to the left 1/2 Bathroom door, Background Middle kitchen, Background Archway leads to garage, laundry room and master bedroom.

 

This shows a portion of the living room.  You see the curtains and seating area of the living room.

 

Well, I have to go rest.  I've been up for one hour and need to go lay back down.  It stinks, but I'm learning to live with it for now.  At least I have a comfortable place to rest.

Follow Up 1 week ago

I had my follow up 8 days ago.  I've really had to digest this last appointment. 

Each appointment, we get closer and closer to pulling out the big dogs.  By big dogs, I mean IV antibiotics.   I truly believe that if we weren't having such a tremendous heat wave (even though this week is cool -- and if my appt had been this week, our decision may have been different) he would have scheduled me to have a picc line inserted.  However, we had a string of over 100 degree days and a line with that weather (and humidity) is just doomed from the beginning especially with my skin sensitivity to the line, dressings, cleaning solutions.  It's much better to be a cooler temp. 

So with that said:  My next follow up is near the end of August.  This weekend, I will start all 4 of my oral antibiotics along with a multitude of supplements. I will be on these through my follow up.  Depending on how I do will depend on the next step, but based on previous attempts --- more than likely at the beginning of September,  I will be having another picc line inserted to do my first ever IV antibiotics.  It will also give me access for other types of IVs as well. 

Truthfully, I should have started this process in January - but it takes my mind a while to catch up with what my body needs.  I was fighting this process and now I'm fighting Lyme and Babesia and apparently Mycoplasma Pneumoniae.  I'm tired of fighting, but I can't afford to give up.  I've given myself a medication respite with approval from my LLMD so I could get some stuff out of my body, but I really need to restart them.  I work a long day today (but Jennifer, you quit back in December you say --- well I went on substitute status and they really need me to work today --- ).  I've known for a few weeks I'd work today which was one of the reason I went on med respite this week so that I wouldn't be having a herx reaction while working.

I've worked a couple of 6 hour shifts since quitting in December, but no more than that.  So pray that I can make it for the 9 hours I'm there (plus the scant hour of traveling) without falling asleep and without mental confusion and without great pain. 

The Heat Is On

It has been HOT in North Carolina.  I've heard lots of jokes on facebook lately about faces melting instead of sweating, how their sweat is actually sweating and just in general about how hot it is out there.

Friday we reached a tied all time record high of 105.  This has only happened at our airport 3 or 4 times since the record keeping began.  Then yesterday, we broke another daily high and tied the all time record high temperature again of 105.  When we walk out of the house, the heat hits your face.  It's overwhelming.  You know it's hot when at 8pm at night the temperature is still in triple digits.

I try to keep the perspective that my army friend is in his army gear over seas where the temps are reaching 135 degrees, but honestly it doesn't help much.  Hot is hot is hot.  We feel blessed to have kept our power although it did flicker a few times on Friday.  For me, hot weather causes problems.  It causes me to feel downright lousy.   The best way I can explain it is that I struggle to breath and I feel icky inside.  I get out of breath from the front of the house to the mailbox. 

My husband and I have been in and out of the house since we moved.  When he's home, we're on the go.  We just really enjoy going out.  Today, we've pretty much stayed home with exception of about an hour when we left to pick up a curtain rod for the window in our ,non breakfast nook, breakfast nook area.

** House Update **

Slowly, but surely we are getting there.  The dining room looks awesome.  The living room is now functional.  My goal for the week is to get the bedroom looking awesome, which entails emptying boxes that are just in the middle of the floor. The secondary goal is to get my office looking better, which also entails emptying boxes or at least putting them in a location that isn't so obvious when you walk in the door that we've recently moved in.  Then I will feel like the first floor is company ready.  Our only big purchase for the first floor left is the heavy duty blinds that will help keep out light (when we want it) and heat.  We know exactly what we want, but have to wait a few weeks to order them.    There are a few curtain and rods that need to be bought too, but we'll wait for those as well.  As soon as I get the first floor organized, I will post some pictures of "before" and "after."