Saturday, December 31, 2011

2011 in review

January, February and March 2011

The first three months of 2011 whizzed by. In January we spent the time organizing our bedroom and closet. It made me happy. They stayed fairly clean until the last 3 months of the year when Lyme sent me spiraling back into the depth of despair. I do have a plan though. Get it back to where it was. It will take some time, but I will get it there. I also celebrated my 35th birthday. It was hard to believe that it had been 5 years since my 30th birthday.

In February, I went through a whirlwind of grief. I discovered that a friend of mine had died of lung cancer. I retreated into a world of my own and did not post much on the blog.

In March, I discovered that one of my closest Lyme friends was a musical genius. I knew it, but didn't know it. I discovered Alisa's music. It helped me through some tough days. I took antibiotics for an infection for the first time in a while.

The second three months of 2011: April, May and June

In April, so much happened. It was a whirlwind of grief really. I'm the kind of person that when someone else loses someone they love that I hurt. I really empathize. Whether I knew the person or I didn't. Whether I loved the person for a lot a long time ago or whether I never even met the person, I hurt almost the same. So in April, we celebrated anniversaries and births and deaths of friends and family of friends. I had a lot of migraines. I attributed it to stress.

In May, I had the first UTI in ages. That sucked, but it opened my eyes to what was going on with my body. I restarted LDN to help increase my immune function so that I could help prevent anything that might be going on with my body. Unfortunately later in the year we decided it wasn't helping me much so I went off it. At home, we had lightning hit several things which meant we were left replacing a lot of things. On the health front, my picc line bumps returned with a vengeance. Yet another sign that something was up.

In June, I began swimming. I swam a lot. Also made a follow up with my LLMD. I found out my Dad was heart healthy.

The next three months: July, August and September

In July, I had blood work done. I also went to a Lyme Walk which was nice. I met some really awesome people there. I hit a high when I was told I was definitely in remission. I began a cream of LDN.

In August, it was weird. I spent a lot of time with friends, but I had started to take a Lymie Slide.

In September, I spent a lot of time buying new clothes. It was fun, but not. If that makes sense. AND I hosted a Lyme Lunch with all my Lyme friends. Oh it was very fun! However my health was taking a nose dive.

The last three months:

In October I began to have some serious symptoms which included terrible migraines almost every day. I went to UNC and to the fair. I got my first IV in a year and realized that I had indeed relapsed. I began to use the HBOT. I started some vials and began to herx. I was sad.

In November, I had my ear mole removed. It wasn't cancer praise God. I had another IV and we went to the beach on "Black Friday." I had many many HBOT treatments. They began to work miracles on my headaches.

In December, I quit my full time job and went on substitute status. My last full time day was the 16th. I spent time with my family and my husband. We went to Greensboro. We had fun with a college friend and his new bride. I had my 3rd IV.

2011 was filled with ups and downs. My health took a nose dive, but I was on it. Hopefully 2012 will be filled with increasing my health back to where it was earlier in 2011.

Tuesday, December 27, 2011

2012 Wish List

Every year I sort of make a wish list of sorts in my head of what I would really like to happen in the next year. This year I thought I'd put it out there to see if I stayed on track. I rarely ever do what I intended, but thought that by putting it down on "paper" I actually may do better.

Health: I wish for my health to be better in 2012. For most of 2011, it was pretty good. However things happened to cause a relapse. So for 2012, I plan to utilize a reduce, reuse, recycle health plan. Reduce Stress, Reuse and recycle alternative treatments that worked in the past.

Home: My family has several wishes in regards to this wish. We will see if it can come true in 2012. While we love our home, there are several things that we would love to have and honestly those things wouldn't be easily obtained if we are where we are. So we would love to be able to either purchase some land and build our dream home upon it, or find a new home that we would easily make into our dream home. Either way, a lot of prayers would have to be fulfilled in order for either to happen.

Family: I would love to spend more time with my family. Fortunately I'm in the position where I can do that in 2012. I am on sabbatical from work.

Then there are some too personal to list here wishes. It's perhaps those wishes that I wish for 2012 most of all.

Sunday, December 25, 2011

2011 Christmas

Usually I post a whole bunch of silly photos of Christmas Eve or Christmas Day on the blog, but this year there will be none of that!

Since I had the relapse, I decided I would be happy if we had a small tree up (though that did include the ornaments from the big tree that never made it down oh well), the nativity scene and moravian star.

No presents were purchased, no stockings hung with care. The last time this happened was 2007 though that year we had plenty of presents. It is kind of sad, but there is something special about this simplistic Christmas. We are giving what we have - our time. Time with each other, time with our families.

Because of my career, I sometimes get small gifts from children. This year I got a gift card from target and my husband and I chose movies for us to watch together to use the gift card on. We could have used it for something practical, but this year we decided to use it for something we could do together. Yes, I wrapped them all up. We began on Christmas Eve and unwrapped 3 of the movies (the gift cards actually purchased 5 movies and we splurged on 3 more). We watched 3 last night to watch.

Togetherness. That is what 2011 has been about and what I'd like 2012 to have more of.

Thursday, December 22, 2011

well that didn't last long

So after the party on Friday, my boss casually mentioned something to me. I told her I'd think about it. So less than 6 days after my last day, I got my key back.

She pretty much made me an offer I couldn't refuse. She asked if I would be interested in being a substitute on the management team. So if there was a day she or the other managers couldn't be there, I could open the building so that the other person wouldn't have to work a 12 hour day. I'd get plenty of notice and if I couldn't work it, that was fine. I would just have to say that I couldn't.

So today I got my key back. It's back on my chain where it belongs. Guess they really do love me.

Tuesday, December 20, 2011

The Adventures of the non-working Lymie

Oh my word. The past few days have seriously been filled to the brim. Kind of sad the only way I'll get to sit is by getting an IV and HBOT!

So a couple of months ago I told my husband, "I smell something funny in the car." It would come & go in waves. Sometimes it smelled terrible and sometimes it smelled kind of sweet. We were sure it was anti-freeze. Then the last time he changed my oil, he heard my car making this knocking sound. Sign number 2 something is wrong. He finally put all the puzzle pieces together and inspected my car and decided the water pump is ready to blow. So yesterday, I spent it calling Toyota - making appointment and driving it up there to be worked on today.

Also yesterday I spent the morning on the phone trying to fix another problem. They called to say my husband had an appointment today, well first it was ME that had the appointment today and secondly he doesn't have an appointment until the 27th. I explain this. They say, "no, it's him that has the appointment." Uh no, it's me. Then they say that he doesn't have an appt at all on the 27th. Good thing I have the paperwork shows that he does have an appt on the 27th. ;)

So today my appt is at 10:30. Well because my car is in the shop, Rob gets to drive me there at 8:30. So I get to mosey around the doc's office for 2 hours. good thing they love me! I brought DVD's out the wazoo and food too. Even a game of Uno if there's anyone that feels up to a game. Then afterwards, another Lymie will drive me to my car. Yeah I'll be at my LLMD's today forever. 8 to 4. IV & HBOT.

Maybe I'll get to rest tomorrow. My great friend and former boss from college is retiring tomorrow. I would love to go see her retire, but because of the 10 hour drive both ways I sent a letter instead. They will read it at her party. She will cry I'm sure of it.

Signing out cause I got to get dressed and head out for my really long day!

Saturday, December 17, 2011

Memories to last a lifetime

Last night was work's annual Christmas party. We typically either go to someone's home (my former boss's house usually) or a restaurant every few years. It coincided with my last day so while I typically don't like going out to restaurants in a big group or staying out way past my bedtime or driving home in the rainy dark skies or parking in Crossroads mall the weekend before Christmas, I decided it may be the last time I see some of these wonderful friends so I went. This decision was cemented when almost every single teacher asked during the week, "You're going Friday right?"

I'll be honest, I'm the expect nothing be surprised at everything kind of person. We passed out the numbers for the dirty santa game. You know that one right? The game where everyone brings a gift (our $ amount was between 15 and 20) and puts it on a table. Those that participate get a number. Then 1 at a time we either pick a gift from the table or steal a gift that has already been chosen. So the numbers were being written and passed out. My friend and now former school Administrator tapped on her glass to get everyone's attention much to the surprise of my now former boss. K stood up and said, "As you guys know, this is Jennifer's last day ...." I must have turned 3 shades of red.

Then she proceeded to tell one of her favorite things about me. Her story included my kindness and compassion in picking up one of our staff members who couldn't drive. I did this drive almost daily (which added a good 15 minutes to my already long commute and times that by 2). I got up early, drove to her house and waited for her to come out. Sometimes it would take longer than I would like. I would get anxious about getting to work late (because I was a key holder and opened the building). Finally she would arrive with her boisterous personality and we'd be on our way. Then at the end of our shifts, I would take her home. Near the end, there were about 3 of us that did this so that I wasn't the only one picking her up and taking her home. This is the lady that passed away suddenly a few years ago. I loved Pam. She was the true definition of the spirit of love.

My boss asked that everyone share their favorite "Jennifer story." Some were thank yous for being me. Some people told stories that made me laugh so hard that I snorted. I almost knew each story before they were told. I'd see the person and go, "Oh I know what you're going to say." We'd laugh and then the story would be shared. Some were things that only the two of us knew and others were things that almost everyone at the table knew.

One such story that only about 1/2 of the table knew (and I to be frank had completely forgotten about) was the time we had an after school event. We invited the parents to come and join us for some festivities. Well I was in charge of teaching and marketing our tutorial programs so during these festivities, I tried to make myself seen as much as possible. Well on this particular event I decided (and don't ask what gets into me -- I really don't know) to wear this vest. Well this wasn't just any vest, it was a vest with organs on the outside of it. You know where the kids can pull off the organs and then put them back on? So I walked around (with one of those slide whistles) walking up to almost every parent asking if they'd like to donate money for a raffle to have a free week of lessons and every time someone donated I'd say phrases that included the body parts on the vest like 000 I'm so glad your hearts in the right place and blow the slide whistle. One time I even said, "This vest doesn't have a gallbladder, but that's okay I don't either." Haa!

Then there was the story about one of my favorite collegues. A while back, she was in the kitchen cooking when the stove started a fire. She was a little spooked and I was too, but I was laughing and calling for help. We got the fire stopped and then every day for a week I put youtube videos on her FB wall that had something to do with a fire (We didn't start the fire, Great Balls of Fire, Hey baby light my fire, etc.). That was one that few people knew about.

My friend A said it best, "You're the kind of person that you want to kill one minute and hug the next." I've got a very unique personality (especially at work) that leaves people shaking their heads and saying, "Only Jennifer." This friend actually picked the gift that I brought so she asked if I would write in it something nice. So I took it and wrote, "You wanted me to write something nice. 'something nice' " and then I wrote a little more (but can't remember what that was).

I was given a dozen red roses (insert tears) and a card that everyone signed. Now if this doesn't tell you about me, my first reaction was, "I can't believe no one signed the crack" which elicited the response, "Only Jennifer." A coworker gave me a beautiful snowman ornament. She asked my boss what I really loved. My boss told her snowmen. They know me so well. Everyone wrote such nice things. It's so nice to hear how much you're loved and appreciated. I may have been embarrassed, but it's a night I won't forget for a long time. I have never felt more loved from a group of people than I did last night.

And the dirty santa gift I stole -- cause i'm an instigator like that -- a pair of socks, a candle and a target gift card! What's funny is that when the person chose it originally I said, "Might as well hand it over Tennessee cause I'm taking that home tonight." But then I had to wait for my number to be called and it happened while Tennessee was in the bathroom! I stole it anyways! I knew she wouldn't *really* be mad since it was me ;)

Friday, December 16, 2011

Tough Day

I'm pretty much known as the silly one at work. I goof off with faces and voices all the time. Even walking out I muttered "That's All Folks" ala Porky the Pig. But then I sat in my car and cried. I know in my head that this isn't me giving up. I know this is me giving my all to get back my health, but it doesn't make it hurt any less.

I managed not to really cry in front of anybody, but lemme tell ya. It was a little difficult not to cry when a little boy handed me a bouquet of flowers and said he would miss me very much. Every hug hurt both physically and emotionally. I didn't want to let go, but let go I did. I stuck around almost 3 hours after I clocked out for the last time. I watched my children perform and we had a holiday party with the children and all the parents. I got hugs, gifts and lots of well wishes.

Someone once said, "Some people come into our lives and quickly go. Some people move our souls to dance. They awaken us to a new understanding with the passing whisper of their wisdom. Some people make the sky more beautiful to gaze upon. They stay in our lives for a while." My prayer is that I left an impact upon many people and that every day someone would say, "Oh remember when Jennifer would ...."

It was a tough day indeed.

Wednesday, December 14, 2011

Comedy of Errors at the Grandover Resort

My husband and I have really terrible luck at hotels. We typically get placed next to the noisy room. So when we planned a little trip to Greensboro, we decided to stay at a resort & spa. We have found that these type of places tend to be a little quieter and nicer than regular hotels. We even sprung for the King Suite with Whirlpool Tub because we like jacuzzi tubs.

We got there four hours early and the staff let us check in. The lobby was amazing. It was almost as good as the Grove Park Inn in Asheville - I just love that place, but this place was closer and my heart fell in love with the Christmas trees and decor of the Grandover Resort in Greensboro.

This was one of the trees found in the resort.

We got up to the room and found it to be in nice condition, but it was no Grove Park Inn. However, we weren't planning on spending a whole lot of time there on Saturday so as long as the bed didn't have bugs and the whirlpool worked, we were happy. Whirlpool worked and the bed was comfortable.

We met my college friend and his new wife at the Natural Science Museum to see the Titanic exhibit. That was pretty cool. I was a woman on the Titanic in the first class and I was one of the saved passengers. My husband was a man in the 2nd class and unfortunately he perished.

We ate dinner and headed back to the hotel. The four of us spent time out in the hot tub, but the two men braved the cool waters of the pool while the ladies soaked our leg muscles in the hot tub.

The Hot Tub:

The Pool:

After we were done soaking, we decided to go our separate ways to our rooms. We made our way to our 4th floor room and got ready for bed. Then, it happened.

We heard slamming doors, loud talking and laughing in the room next door. I fell asleep and then one of the three things would wake me up. Finally around one am, my husband made the call to the front desk letting them know of the extra loud things going on next door. A few minutes later we heard security knock on their door and things calmed down, but every time I fell asleep someone next door would laugh so loud it would wake me up.

My husband decided he would get up and call again when something caught his attention. I heard it too, but honestly I thought it was the toilet. He went to the bathroom and his shock was apparent. I can't remember his exact phrase, but the bottom line was that there was water pouring from the speakers in the ceiling.

This isn't the ceiling that was leaking, but water was pouring from the circular thing in our FIRST room.

He put a trashcan under it and made a second call to the front desk. Very shortly after, security came to check it out. Then maintenance came and finally a bell hop showed up with new keys to escort us to a new room at a mere 2am.

At this point, we were laughing. All I could think of was the comedy of errors of the night and how somewhat grateful I was of all the noise next door because if we hadn't been disturbed, we would have had a major flood in the bathroom.

We did have a good time though in Greensboro and after we left Greensboro Sunday morning, we headed to Old Salem to check out the colonial village.

Tuesday, December 13, 2011

Choosing to Change and my announcement

Once you finish reading this, you will see why I had to wait to make the announcement. My heart is still heavy over this. If you know me at all, you know how much I hate change -- but today I choose to change. I will do the same thing over and over again because of comfort. But today, in order to preserve my own sanity and my own health, I need to choose to change my own path.

One thing I have learned over the last four and 1/2 years with my Lyme diagnosis is that periods of stress can cause serious relapses. There are many things that are causing me undue stress. I need to choose to change those things for my own preservation, but the change itself causes stress. It really is a vicious cycle. However, there comes a point where you have to choose a path. Which path is less stressful?

Edgar A. Guest said it best, "You are the person who has to decide. Whether you'll do it or toss it aside; You are the person who makes up your mind. Whether you'll lead or will linger behind. Whether you'll try for the goal that's afar. Or just be contented to stay where you are."

So I am deciding, I am choosing ... choosing to change. I am choosing to not linger behind because moving forward is the option I must choose. I choose to change. The other aspect of change is this: Insanity is doing the same thing over and over again expecting different results. Since I got sick, I have put other people's needs ahead of my own. I have done a lot of things to improve the quality of my health, but when push came to shove -- I always gave more to others than I gave to myself. I gave others advice that I wouldn't take myself. Finally, I chose to change that.

What's all of this got to do with Lyme? Well I have pushed and pushed myself daily to make it appear that I am better than I am. When I was in Lyme remission, it was wonderful. I didn't really have to think twice about going out, staying up late or hanging out with friends. I just did things. Well now that I'm out of remission, it's more difficult to push through to appear normal. So I decided something has to give. What needed to give were my own expectations. I needed to change my own expectations. Therefore, I choose to change.

Bottom Line is that I need to make my health my number one priority. I need to make more time for God, my health and my husband. Therefore with heavy heart, I resigned from work on December 5th. My last day of work will be Friday the 16th of December. While I will meet those who disagree with my decision, it was my decision to make. And to those that think why now, why not before --- it was something that had to be done in my own time. If someone two years ago had said to me that I should stop working, I would have said absolutely not. I was stubborn. I am stubborn. That's why I have worked the duration of my illness. Stubborn as a mule. However, I am choosing to change. I still plan on being stubborn, but stubborn to get well.

Lyme Haiku

I wrote this Haiku in July 2011.

I have Lyme Disease
though it is in remission
I jump up and down.

I wrote this Haiku today.

I have Lyme Disease
my symptoms do come and go
my eyes burn from tears.

Monday, December 12, 2011

The big announcement

The big announcement is coming tomorrow. Also stay tuned for the story of our night away from home. It was a comedy of errors; that is for sure! However, we had a great time even with all the errors.

Tuesday, December 6, 2011

My Ear Cyst

I received the results of my ear mole yesterday. They called and said the cyst was benign. I asked for them to send me the pathology report. So I received a "final diagnosis," "gross description," and a "microscopic description." I do what all doctors say not to do, but I'm an excellent googler. :)

I googled the final diagnosis: Seborrheic Keratosis. I'm satisified in their "benign" report based on things I saw on google. It is a benign form of a skin tumor and the cause is unknown. However it's most common after the age of 40 (I'm not there yet for Pete's sake!) and tends to run in families.

I then googled each of the words in the microscopic description. Of course I really didn't understand anything I read. So then I googled, "Seborrheic Keratosis on the ear" and found this article located at this web address: I'll bold the parts that I found interesting.

"Seborrheic keratosis (SK) is common in the head and neck region, but ear involvement is rare. SK results from intracellular changes that create intraepidermal basal cell proliferation. It presents as an oval verrucous plaque. Early, the lesion appears light yellow, and it becomes more brown as its size increases. Histologically, thickened epidermis secondary to accumulation of immature keratinocytes between the basal layer and the surface as well as invaginations of the thickened epithelium that create keratin tunnels are seen. The tumor protrudes above the horizontal plane of the skin. Complete surgical excision is recommended for SK, and a good prognosis is expected. Malignant transformation has been reported. "

I will say that it's odd that I got the "rare" location of the ear. However the rest of the thing proved true. It was kind of oval in shape, it was lighter in the beginning (but not light yellow) and grew brown. It did protrude above the skin. I'm glad it was removed considering the last sentence.

Then I googled for the image. Yep. Mine looked very much like some of the ones pictured. I won't be kind enough to let you see, but if you're interested --- google image seborrheic keratosis on the ear.

Saturday, December 3, 2011

Yes Virginia, there is Lyme Disease

I saw my Lyme Doctor today. Have I said lately how much I love him? In a few months, we'll have been seeing each other for FIVE years. In that time, he's been to FIVE ILADS conferences. He told me at this recent conference he learned about the study that was done regarding a mouse and the Lyme bacteria. I'm not sure that I understood entirely correctly, but I do know that the time part is accurate. Something was put into the borrelia bacteria to make it glow so they could see it in the mouse. And that they could see the glowing bacteria go into the mouse and that within 30 minutes the bacteria was in the blood and that within 6 hours it was out of the blood and into the tissues of the body.

I said to him, "That's COOL and TERRIFYING at the same time." It's cool that they were able to show that, but terrifying because within SIX hours of attachment it can already be out of the blood stream and into the tissues! No wonder it's difficult to diagnose with blood tests! He studies with other Lyme doctors and between the two of us we always come up with treatment plans that can work for me. He listens. He understands. He asks questions. He's awesome. I refer as many people as I can to him I believe he's that good. Lyme is not a simple race. It's a marathon. More appropriately, it should be dubbed a triathlon with the emphasis on "tri."

Yes, my relapse is in full effect. What's next for me? Antibiotics? IV's? IM shots? More HBOT? Well I'm not exactly sure that antibiotics aren't in my future. In fact, if I had to take a stab at it ... I'm almost positive that unless something changes between now & February, I will probably be in the very least pulsing antibiotics.

IV's ~ not talking about Antibiotic IV's here though I suppose it's not out of the question. However I prefer a more natural route. IV High Doses of Vitamin C. If I could afford it and my veins were better, I would get a couple a week for a couple of months. However, I can't really afford it and I would rather not get another PICC unless absolutely necessary. Though, it it becomes necessary ~ it is an option.

IM shots? Well looks like to assist my fatigue problem, b12 shots are going to be my friend. I've done many things ... given myself a shot hasn't been one of them. Let's just add it to the list of things Dr. P has convinced me to do in order to improve my quality of health. So as soon as they come in, I'll be giving myself (or convince Rob to do it) a shot.

HBOT? It has seriously improved things already. So I will continue them with the frequency of one per week. I've already spent a grand total of 23 hours in the machine. It has made me feel less anxious, angry, and overall emotional. It has improved my headaches significantly. It has made my breathing less labored and less painful.

I also have an announcement to make in the next couple of weeks. And before anyone thinks it, no I'm not pregnant. It's an announcement that very few people know and I don't want it out in "public" until I have told the people it's going to impact in person first. I would rather them hear it from me than read it on my blog first or have someone else read it and call them. So once the people that absolutely must know know, I will share with everyone here.

** just so I don't forget, I wanted to add in that during my appointment yesterday I almost fell asleep. If I hadn't been fighting it so hard, I would have fallen asleep. I'm surprised I even remember anything from the appointment. Partially through my husband's appointment (his was right after mine), I had to get up to go to the IV room just to lie down. I couldn't sit up any more. **