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.

http://emedicine.medscape.com/article/845901-overview#a30

"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. **

Monday, November 28, 2011

Rest In Peace Ear Mole

June 11, 2009 - November 28, 2011, Rest in Peace Ear Mole.

Remember when a Curious Lymie went to the regular doctor because a mole popped up on my ear?

Well, it began itching and burning this week. I had just looked at it a few weeks ago, but because it was itching so much I decided to take a peek at it yesterday. It didn't take long to realize it had doubled in size and there appeared to be some dark spots too. So this morning I called for an appointment to have it checked out again.

My favorite nurse practitioner checked it out, sliced it off and sent me on my way. It's being sent for pathology. Probably nothing, but a just in case thing

Saturday, November 26, 2011

Love-A-Fair Flowers

Sorry this is so delayed. I forgot they were in que to be posted:

I love taking photos. I love flowers and plants. I love photographing flowers and plants. So my first stop at the Fair was to the flower/plant section. :) Here are a few that made me smile. All of my photographs are Straight Out of Camera. I don't edit them with any programs. So when I get home and see pictures like these, I smile. I love my camera. Though we do have a love hate relationship when the battery is getting low and it doesn't want to actually take a photograph. But without further ado,

Bonsai!


I love flowers in color, but there is something special about a black & white photograph.



Orchids - Colors!



And my favorite of the day: (I may just have to print it off and put it in the my kitchen!)

Wednesday, November 23, 2011

HBOT Update

My Hyperbaric treatments are going really well. The number one symptom that made us believe that the Lyme had returned was headaches. They were terrible. I had migraines that lasted for days, ease off just a little bit and then come back with a vengeance. In total, I've had about 17 hours of treatment in the HBOT. It's been 3 weeks since I've had a headache, even a mild one.

If the rest of the symptoms would go away, I'd be one happy lady. It's already much easier to live without the headaches.

Wednesday, November 16, 2011

Given Hope

I was reminded today how much hope our Lyme doctor's give us and then shortly thereafter I was reminded how much they put on the line every day to give us that hope.

I'll never forget the emotions I felt during my very first visit to my Lyme doctor's office. I felt justified. I felt like someone cared. I felt like someone listened. I felt hope.

Today as I was walking out of the Lyme office, I overheard someone thanking the patient coordinator for giving their family hope for the first time in years. I remember being that person.

Then I got home. Found out that another Lyme doctor is having his license suspended. It's so frustrating. All those patients of his that he has given hope ...

Here is an article written by PJ Lanston in the Public Health Alert regarding Dr. Hoffman. It's so upsetting.

Tuesday, November 15, 2011

It's NOT me

There is someone on Facebook who has the name "Livingthe Lymelife." That is person is not me. Just wanted a little FYI on my blog.

Thursday, November 10, 2011

Lyme Kills II

I wrote yesterday that I would share what I wrote in the chamber. Here it is.

Lyme Disease Kills. It dashes hopes and dreams of the innocent. When I graduated from High School, I had great expectations that college would open up an entire new world for me to be someone different. Then, it happened. A few weeks prior to commencing college a radioactive tick bit me. Okay Okay, there was no radioactivity, but soon my body and mind came to a crashing halt. Lyme killed my ambition, my love for a phenomenal novel and my quiet nature. Lyme Disease kills.

Ironically, I was someone different in college. I was hurt and angry and sick. And no one would listen. Okay Okay, some listened, but they weren't the ones that could do anything about it. In fact, they could do nothing except for clean the blood from my head when I ran into something yet again, remind me to breathe after a seizure, hold my hair back while I vomited or hold my soda for me while I tried to sip. Sometimes, they held a straw in my mouth and dropped bits of soda into my mouth. I felt, at times, a bit like a bird -- helpless and wounded. There were times when I was so weak, I couldn't eat. Not being able to eat made me weaker. It was a vicious cycle. Lyme Disease kills.

In the end, I had to fight for myself. I had to fight for what was rightfully mine - the right to an education - Advisers were against me. Professors were against me. Doctors were against me. People I didn't even know well were against me. Here I am again. Fighting for myself. Fighting for an education. If I didn't fight for myself, who would? There are a whole slew of folks that would fight for me, but no one fights better for me than me.

I will admit that I am in a whole lot better place now than I was so many years ago. I have several people at the school that are working for me and I haven't met the professor yet, but if she's anything like the EDU adviser -- she'll be in my corner too. They know nothing about Lyme. They don't know I have health problems. I debate whether to mention it. I also have a phenomenal doctor on my side, a husband on my side, my family on my side and friends. Fantastic friends. Friends that know when I need a hug or a simple I love you.

Lyme may kill. Lyme may have killed my ambition, my hopes and my dreams before, but it will not kill me now. I will push through this. I will get through this again.


------
As a post note: I got registered today for the classes I want to take in the spring. I'm so excited and can't wait to see how my brain holds up during the spring semester. My biggest concern is the timing. It's from 6pm to 8:50pm. I typically can't stay awake after 8pm. Even if my eyes are open, my brain is generally down. So pray that my brain and body will stay awake at one night a week from January until May. When I was taking classes in 2002, I got a 4.0. This was 5 years before my diagnosis. Here I am 4 1/2 years after diagnosis and we'll see if I can continue this 4.0 trend.

Wednesday, November 9, 2011

Lyme kills ...

So I rarely put pencil to paper anymore. Well yesterday while I was in the Hyperbaric Oxygen Chamber, I took my notebook and pencil in with me. It's loud in there, but I took it in there to make a phone call. Silly I know, but I knew that I needed to make this phone call. I am taking the brave step in the Lyme world to take a couple of classes at our local community college. I applied in October and on Friday I got my acceptance letter (as I spoke of in my last post about Acceptance). Well, I decided since this week was going to be insanely busy that I would go to the college on Monday to find out what I could do about registration and paying.

Well, I went to Admissions to clarify that my name was in the system correctly as the name on my letter was spelled incorrectly. So the lady at the front office clarified that not only was I in the system, but it was spelled correctly. She told me I needed to go to the CAP (don't' ask what it stands for, I can't remember) office and explained where it was. So I huff it down the hall and am exhausted by the time I get there (and it's really not that far away). She says, "Name? Appointment time?" uh HUH? I need an appointment? Seriously should have known that, but I didn't. Stupid me. Stupid LYME.

She tells me to go over to the computer and log in to see when my classes are offered. Me being a stupid Lyme, I got as far as to the "Web Advisor" screen before my dumb brain locked up on me. She came over and began to multitask beautifully. I even commented on it. She helped the guy next to me, the girl on the phone and me all at the same time! So she tells me exactly what to do and we get the, "NOT IN SYSTEM, SEE SYSTEM ADMINISTRATOR." She says, "Go back to the admission office and have them straighten this out. we can't do anything until that's fixed." So I huff it back down and explain the problem. The nice CAP lady even printed off the error so they could see it.

So, I get down there and they say that I'd have to come back later because the lady that would be able to help me wouldn't be there until the next day. I almost broke down at this point because I was exhausted, fatigued (and yes those are two different things!) and drained. My legs felt like the flesh was being ripped right off, but I kept my cool. I explained that I was an Early Childhood Educator and that I worked in another county and my hours were insane this week. Coming to campus on another day this week really wasn't an option and because I'm a special student only taking two classes for work that I really needed it figured out asap.

She disappeared into the back and came back about 10 minutes later explaining there was some kind of glitch in my file and she would try her best to figure it out. She went from office to office (taking a good 5 to 10 minutes in each one) with my file. Finally she emerged with a lady who said that it must have been user error. And although I wouldn't put it past me, I was with the CAP lady and she does this on a daily basis. So I did the exact procedure that I did with the CAP lady. Sure enough, same error.

She left again and then came back and said it was something they couldn't' figure out, but I couldn't register until the 9th anyways so as long as they had it figured out by then I would be good. So I left feeling utterly dejected. I couldn't even do something simple like that then how would I be able to take these classes next semester. What did this story have to do with the HBOT and the phone call?

Well, I needed to make the call to the office to see if they had figured it out. However the chamber seemed louder than normal so I decided to wait. After I was in there about 30 minutes, the phone rang. It was a lady named Christy. Now I don't know if this was any of the ladies I worked with on Monday, but she was very kind. Explaining that my student ID should now work and if I could just try with her on the phone. As I'm talking to her explaining that I'm in an Oxygen Chamber and couldn't just get online at that very moment, I realized how odd my life sounded to those not in the know. Who else would she call that in that very moment would be in an Oxygen Chamber? Seriously.

She wasn't even sure how to respond. I told her that I had tried before getting into the chamber to log in and was able to see my "user name," but that when I tried to set my password it said that "No person ID was found in directory." She said she would continue to work on it. I continued to pray about it. Then, I put pen to paper. I wrote and I wrote.

I'll share what I wrote with you tomorrow, but for now let me tell you that Christy worked and worked on my case and by the time I got out of the HBOT ... I was in the system. If it works, I'll be able to register in about an hour. Honestly, it probably won't work, but I'll be pleasantly surprised if it does.

Saturday, November 5, 2011

Acceptance

I have often struggled with acceptance over my 35 years of life.

How do I accept things that I do not want (or think I need) in my life? A prime example of this was between 6th and 7th grade, my family moved a couple of counties away. I struggled with acceptance. For the first three years I was there, whenever anyone asked what time I was going home that day, I would say, "I don't know. This is not home for me." I couldn't wait to go back to my old home town. I hated where I lived. It was a difficult thing to swallow that I would not be going back to live there. I struggled with acceptance. Finally, I accepted that it was my home. I began to make friends, best friends.

Then there was the acceptance of Lyme Disease. There were many doctors that just wanted me to accept the multitude of symptoms that I had. They also wanted me to accept the fact that it was all psychological and not a sign of any disease. I wouldn't accept it. I couldn't accept it. Then I sought the help of a phenomenal doctor. He gave me a diagnosis and I accepted it. Lyme Disease. I try not to make it my life, but it is. I live and breath Lyme Disease. If I could, I would open up a "business" that would teach people about Lyme Disease that would help others with Lyme Disease. Though I wouldn't make money doing that, I have to accept that too.

The other part of acceptance is having people accept me for who I am. Most people either like me or they don't. There is no in between. I have a unique personality that annoys some people. In fact, most people don't get me unless they get me. I'm kind of like Lyme Disease in that way. You don't get Lyme unless you get Lyme. And paraphrasing a friend of mine, if they would just get to know you, they'd love you like I do. My friends have accepted me. Acceptance is nice. I like the world accepting me for who I am. And for those that don't, I really shouldn't care. But I do.

December of 1994, I got a letter in the mail. I had always been told that a "huge" package would mean acceptance and a small one would mean rejection. I got the small one. I was crushed. It was the only university I wanted to attend. Then I opened the letter and saw that I was accepted. Myth debunked. Acceptance doesn't just come in big packages. Acceptance sometimes comes in small packages too. I was reminded of this just yesterday when I received another small package. You see, I applied to the local community college to take a couple of courses in the spring. I got a small letter. I was accepted. It's always nice to be accepted.

Monday, October 31, 2011

Love-A-Fair Patrons

So a few weeks ago, we went to the North Carolina State Fair. I so enjoy going to the fair to eat food and to take photos. I hate the crowds, I hate the far away parking, the crowds and all the walking and did I mention the crowds.

Now this may sound horrible, but one thing I love to do at the fair is watch people. This is North Carolina folks. We are some funny creatures. I got to the fair and there was something right away that I went, "If I see that again, I will have to take a photograph." My camera was in the backpack and not ready for picture taking. I thanked my lucky stars when walking, I saw the family again. Even more so when I realized the person was posing for me. I laughed a thousand laughs at this: Look a Squirrel.



Get this kid a contract. Quick!



Dude with a brush in his back pocket. Seriously?



And last, but not least: Leopard Love ...



And that my fair weathered friends is what we see at the NC State Fair.

Wednesday, October 26, 2011

Busy Busy Busy

I've been really busy lately. I've had several HBOTS, gone to the fair, worked hard and gone to a college friend's wedding. He eloped. Sort of. He & his now wife were going to get married on Saturday. Then, they had to postpone it for some legal and medical reasons. Then those things fixed themselves so they decided on a Thursday to go ahead and get married on the Saturday. I was called and I drove there after my HBOT treatment. It was fun . I got to meet his newly loved lady (it was love at first sight for them), her child and his children. I got to hang out with them all over the ceremony. See his folks for the first time since college graduation in 99. So that was fun.

The Fair. Well I have pictures to post, but haven't gotten around to all of them yet. They'll show up eventually.

HBOTs are going well. I actually really enjoy getting in there. It's odd. I thought I'd hate it. I thought I'd dread it. BUT, I actually like getting in there now. It's 60 to 90 minutes where I have some peace and quiet. I get to listen to my favorite music and just be alone and breathe well. It's nice.

I thought about going to the UNC exhibition game this Friday, but I think I've decided against it seeing as how badly I felt after the Late Night with Roy practice.

Anyways, just thought you needed an update since it's been a while.

Saturday, October 15, 2011

Adventures at UNC!

Love me some UNC Basketball. Ya'll know that. It was that time of year again and I haven't been feeling well. However, last week when I found out that my best friend would be off on Friday I informed him that he was taking me to the Late Night with Roy. Sometimes I go with my husband and sometimes I go with my best friend. ~Fun all around with both~

Bottom Line: We get to see the first practice with the boys. It's fun. See? Tip off is about to happen here. BUT, wait, what is that?



You remember when I told you my camera has a special setting? Look closely. Can you see it? You need help? Okay. Here's a closer view.



Wait, you still can't see?


*sigh* The Eric Montross Setting.

Back to the basketball.

The team looks good. really good. I can't wait for the season to really begin!

The fun detour. So on the way back to the car, we took a detour. We thought it would be faster. Uh, no it wasn't, but it was fun. We climbed up this huge hill. It winded me. I couldn't do it on my own. My best friend pretty much pulled me up the hill by my hand. We laughed. A lot. We rolled our eyes. A lot. Especially at the people around us. Seriously were we that stupid when we were in college? I like to think we weren't.

Thursday, October 13, 2011

Just My Luck

Sometimes I have the worst luck ... today was a case of "Seriously can't believe that happened to Jennifer." So I got to the LLMD. I got into the chamber. I put on the nasal cannula and settled down. They started the chamber. I hear it and see it rising. I'm getting comfortable when all the sudden I realized that the nasal cannula didn't feel right. So I weigh the pros and cons of pushing the button.

You see that button right there? It's a doorbell. All I have to do is press it and they come running. Literally. Yesterday I accidentally pressed it. I didn't even realize I pressed it, but I saw one of the employees at the window and she was saying, "Are you okay?" because I was in the chamber jamming! She probably saw something like this when she walked in.



So yeah I was debating ... do I press it and have the troupes a running into the room? I debated for a few minutes and then I pulled out the nasal cannula and put my fingers over the holes. Hmmmm absolutely felt nothing. No Air, No Pressure, No Nothing. I contemplate some more and then pull out my handy dandy cell phone. I make a phone call. I press 107 to "schedule an appointment." And the phone call went something like this,

"Hey there. It's Jennifer. You know, in the chamber Jennifer. I'm okay in here, but the nasal cannula isn't given me oxygen." Nothing like that to get them running! She was in there almost faster than I could hang up. She presses whatever she has to press to get the chamber to stop running. The chamber starts decompressing. Then, I felt the Oxygen shooting up my nose. I put to it and tell her it's working.

So, she starts the machine again. No sooner had the machine started and the Oxygen stopped. We decided that she would just stop the machine and get me out of there so I didn't suffocate (her words, not mine!) in the chamber. The words "suffocate" might freak out the standard patient, me I was in there jamming while the chamber decompressed. Of course the whole time it was decompressing the oxygen was working just fine. So no chance of suffocating today. I got out and was home faster than you can say Jiminy Cricket.

Meanwhile, I love you all!



I was just grateful that I had three other normal experiences because I wouldn't have known something was wrong if it had been my first visit.


All these photos were taken on Tuesday.

Tuesday, October 11, 2011

Head, Shoulders, Knees and Toes

My Head still hurts, like serious pain. The other thing is that my lip has some weird bumps on it. Don't know if it's bacterial, viral, fungal or what .... but it's weird. What else is new? Weird, Rash, Jennifer ...

Shoulders. My left shoulder hurts so badly that it feels like it was pulled out of socket. I'm sure it wasn't, but still .. ouch.

Knees, they are popping - which means they hurt.

Toes: My toes don't hurt! Yeah!

HBOT. I had my 2nd treatment today. Lasted 90 minutes. I rocked out the whole time ... see.

Sunday, October 9, 2011

Hello New Friends

I'm not sure who you all are, but my "stats" usually stay somewhere between 10 and 50 page views a day. On October 6th, I had more than 1300 page views. On October 7th, I had more than 1500 page views. I'm not sure where you are all coming from, but welcome. I thought I'd reintroduce myself.

I started this journal in September of 2008. I began my treatment March 1, 2007. I wish I had begun my blog earlier. The name of my blog would have likely been Living a Symptom filled with no actual diagnosis Life. What a mouth full. In any case, my name is Jennifer and this is my blog. I actively began fighting the world of Lyme & Co-infections March of 2007. Actually my fight began well before then. It honestly began in 1995. You can read more about the background on the post called "Jennifer's Background." I also wrote a little more of my background story on the post called, "Waiting."

Since my Lyme diagnosis in 2007, I've been diagnosed with mineral deficiency, progesterone defiency, heavy metal toxicity, anemia and other health issues. After a little over a full year of IV insertions, I had a PICC line inserted into my right arm in July of 2008. I wrote about the insertion shortly after I began the blog called "PICC part 2." I battled with it every day until February 2009. Of course it led to a very humorous visit at the hospital .... It probably should have been pulled on many occasions though I had wonderful nurses, doctors, insertion team and my husband to help me keep it as long as I needed it. I used it right up until the night before it was finally pulled.

My PICC wasn't used for antibiotic therapies. That is what many people believe, but it simply isn't true in my case. I mainly used it for intravenous vitamins, minerals and other supplemental therapies. We used it for Chelation Challenge and Therapy which is how we diagnosed and treated my heavy metal diagnosis. My PICC was also used with an extremely experimental and controversial IV protocol for about 9 months that is no longer available. I rarely talk about it because it was so controversial. I'm very angry about that because I feel like that IV did more for me in 9 months than anything else I tried. I truly feel that it was one of the things that got me into remission.

For a while, I was in remission. Recently I have found myself having old symptoms pop up so we're back on the treatment train. However I feel that I have one of the best Lyme doctors and we will get me back in remission. I only wish we had that treatment available for me that I used before. I'm currently "treating" with HBOT, Borrelia Series and IV Vitamin C (plus other minerals).

My husband and I got married on Tax Day in 2000. He's my rock. Until recently when my brain actually started working, he went with me to almost every single doctor's appointment.
He supports me with his quirky sense of humor and he had selfless determination to get to the root of my problem. He was the one that found my Lyme doctor and he was the one that helped me fill out all the paper work to get in to see him. He spent countless hours on google researching my different symptoms and putting all the pieces of the puzzle together to get to Lyme.

We have two dogs that we rescued a long time ago. We have an adorable lab mix that is somewhat rambunctious (that's an understatement) that we adopted from the SPCA when he was bout 8 months old. Then we also rescued a Dachshund from a home that didn't want her anymore. I went over to this house with a friend of mine to donate clothes for the mother. When we arrived, there was a terrible stench that greeted us. The house was full of children and pets. I mentioned how many pets they had and the lady said they were trying to get rid of one of them. I found this lovely scared overweight Dachshund under the couch. I told the lady I would take her to the SPCA and find her a home. I fell in love and she's been under our loving care ever since. She's definately no longer shy, but does get scared at new people. She's no longer overweight either!

I work in a child care school. I consider myself one of the most flexible teachers at the school. I can work in any of the classrooms and excel. My preferences are the preschool rooms. I absolutely love the 3 and 4 year olds. They are just too funny. Also I work a lot up front at the desk. I love to give tours of our school for prospective parents, solve problems that teachers/parents have and answer the phones.

In addition to all of this, I love taking photographs, going to Carolina Basketball games and listening to WCU's Pride of the Mountain Marching Band.

Friday, October 7, 2011

I'm a herxing

Yesterday was a great day. I woke up clear headed and without headache. I was thrilled as you can imagine, but then today happened. Last night I took Borrelia Vial #2.

So, I woke this morning in quite a bit of pain. The problem was that I felt as if I had about 100 pounds of weight on my arms. They were heavy. My back was aching. I took Tylenol and went on to work. As time went on, the pain got worse. By 9am, my pain was at a 7. By 11am, my pain was at a 9.5. My head hurt so bad I was seeing black spots, nauseated and I was close to passing out. Tears were streaming down my face. I was miserable. I came really close to having them call the ambulance for me. I was in pain. I pushed through the pain and kept on working. I worked with some amazing ladies that basically just let me be and they worked their butts off for me. My pain currently is around a 6.

This tells me two things. First, my headaches aren't from the LDN (I've been off them a week ... typically my LDN headaches are gone within two days off stopping. Second, my Lyme is back. I mean this I already knew, but the herx reaction today just proves it without a shadow of a doubt.

I have "nothing" unusual to take tonight. I worked it like this on purpose when I scheduled the first day of the Borrelia Series.

Anyways, there ya go. I'm a herxing.

Thursday, October 6, 2011

HBOT

So yesterday, I had my first HBOT dive. I'm going to try to describe it as best as I can.


So I arrived at the office and was taken back to the HBOT room. Then, I was asked to take off my shoes and my shirt. I had on two shirts and was told that the capsule got kind of hot. So I took off my work shirt and left on my long sleeve shirt. They took my temp, pulse ox, blood pressure and weight. Then, I stepped into this machine. I put my hand on "M's" shoulder and stepped up. This was quite difficult, but I grabbed the bar on the wall and pulled myself in. I stood up and slowly sat down. (kind of like this:)


http://www.rimlandcenter.com/photos/thumbs/k.jpg

Now, I'm not quite sure how I thought that Oxygen would be delivered, but color me surprised when I saw the oxygen nasal cannula, the FLARED nasal cannula.

So, "M" asked me to put the plugs up my nose and the tubing around my ears. So I did it as best as I could seeing as how their was already Oxygen blowing out of the cannula. The only thing that got me through this step was thinking of a few friends that I know deal with these things on a daily basis.

I laid down and positioned my head so I could see out of the clear opening. M handed me a door bell and said that if I needed her that I could press the button and she would be right there, decompress the chamber and let me out.


I put in my ear phones with MP3 player and pressed play. M zipped up the chamber and I was good. I was surprisingly good. I thought, oh this isn't that bad. Then I I started feeling something. My ears. I could feel them and hear the pressure through my music. It was uncomfortable. I started getting nervous. This was the 2nd minute in. I started giving myself a pep talk. It was one of those, "Oh you so got this. Get over the fear woman. You are spider woman. You can do this. You did the needle in your legs test ... this is nothing ... Come on Jennifer, get it together. Don't press that button Jennifer. GET IT TOGETHER." Well it went something like that for about 10 minutes and then I settled down.

I listened to some of my favorite songs and sang ... loudly. Well I guess it was loud, I couldn't hear it through the noise of the machine and my ear phones. I toggled between Kate Voegele's Lift Me Up and Sweet Silver Lining. Also enjoyed listening to a little Marty Casey & Lovehammers. It worked. I managed to stay in for the entire planned 60 minutes and the 10 minute decompression time.

As soon as the 60 minutes were up, M came back and scared the boogers out of me. I had my eyes closed and was singing. I opened my eyes momentarily and saw her standing at the opening. She told me (her words were very muffled) that she was going to start depressurizing the chamber. Then I heard it hissing. After it was finished, she unzipped the chamber and helped me out.

It was by far the weirdest thing I've done. I'm not sure if it was the chamber or the IVs or the Borrelia series or what, but this morning I woke up clear headed and without a headache for the first time in a couple of weeks.

Yah! I go back on Tuesday.

Wednesday, October 5, 2011

Hyperbaric Oxygen Therapy (HBOT)

I had my first HBOT treatment today. I really wasn't quite sure what to expect except that I'd be getting into this small space for at least an hour. I want to do the "story" justice so I will wait until tomorrow when I have more time to post about it. However, the tease:

I had my HBOT.
I freaked out.
I fussed at myself for freaking out.
Then, I sang, LOUDLY for about an hour.
Going back next week for a 90 minute "dive."

Tomorrow you'll get more details. I'd post a photo, but I didn't have a camera in there with me!
Maybe on Tuesday I'll take my phone in there and take a photo. I assure you, it's kind of funny.

Tuesday, October 4, 2011

IV today

Today was my first IV since October 30, 2010! After my due diligence, my nurse got my IV started on the very first try. She made it look easy. Of course I started prepping at 6:15 this morning. I drank 24 oz in one hour and then slowed down after I started peeing like a Russian Mule.

In any case, I got to the IV room a little after 1:30 and the IV was inserted right about 2pm. That's pretty good timing. The other good timing was the time of the drip. Used to take 3 to 4 hours with an IV (now it would take about 2 hours on the picc line), but today ... it took maybe 2 hours and 5 minutes. I got a little nervous after the first hour and the line of fluids was still near the top. However, it was sped up and I started being saturated with the fluids!

I must say, I felt differently than I did one year ago. It was terrible. I felt like a horse sat on my chest and farted. Wait, did I just say that out loud? I felt like a horse sat on my chest. It was as if something heavy was sitting there and making me warm and heavy. It was almost a good feeling, but not if that makes sense. The only thing I can kind of compare it to is the way I feel after I've taken a dose of NyQuil. Warm and fuzzy - but with the IV, I felt terrible. I had to pee every 15 minutes, but tried not to b.c it is kind of pain to get up and go down the hall to pee. Plus everytime I walk, the drip slows down. Then on top of it, I had a headache (probably from the B Vitamins).

Now the interesting thing. I'm not sure why this is, but before when I'd get the IVs ... I'd have really florescent urine. It was bright yellow. Today, it was clear. Now I know I drank a lot of water and it should be clear normally, but with all the extra B vitamins in that bag ... one would think that my pee would be the bright yellow color. However, it was not. So I like to think I absorbed every gram of fluid and it's doing exactly what it's supposed to do (instead of me just peeing it out).

Well, it's time to get in bed. I'm exhausted. Hardly can keep my eyes open. Tomorrow I hit the Hyperbaric Chamber. That should be interesting. My first time.

Over And Out! (10/4 - or as I say .. what October 4th? - yes it's a small amount of irony that today is October 4th. means nothing ... 10/4 and yes, I'll look at this tomorrow and go ... what in the world happened to my writing? What was wrong with me ... it's the IV talking!

Monday, October 3, 2011

Borrelia Series

The company that makes Borrelia Series says, "Borrelia Remedy has been formulated to address the symptoms related to infection created by Borrelia Burgdorfi, Babesia Microti and Ehrlichia. The "Series Method" uses nosodes that range from high potency to a low potency. Each potency is administered singly over a period of weeks in a manner that resolves a deep, chronic disease state. This treatment was found to produce results that were extremely gratifying."

This is what it looks like.



Photo is courtesy of: https://www.immunematrix.com/store/images/P/Borellia.jpg

I will start off using Vial 1 tonight. Then every three days take the next number vial. If I have a herx reaction, I will use four boxes of these. After I finish the 10 vials, I will start box number 2. I will start off with vial number 10 and go backwards. Each box will reverse the way I take it until I am done with the four boxes. That is IF I get a herx reaction from the first box.

I start my first vial tonight. Yes I'm worried about how I will respond. It suggests that between vials 2 & 4 I won't feel so well. We'll see how it goes.

BTW: Last night was the 2nd night not on LDN and I still have a headache. LDN might not be causing my headaches, might be the Lyme.

Sunday, October 2, 2011

The Lymie Slide

So in August I started really taking notes on how I was feeling. I had noticed back at the end of July that I really wasn't feeling as well as I had been. So I took somewhat detailed notes. The other day I was putting them all together to bring to my appointment Saturday and realized something terrible. I had done the Lymie Slide.

One day of fatigue during a month is one thing, but during week one of August I had three days of fatigue. In week two, there were no fatigue days. However, I did have two days of headaches. In week three of August, I had two straight days of fatigue and one day of headaches. In the month of August: I had 6 days of headaches and 5 days of fatigue and those two things didn't fall on the same day. So out of 31 days, 11 of them I either had severe fatigue or severe headaches. I also had allergy symptoms including sore throat, sneezing, coughing, stuffy nose, etc. There were four or five other symptoms that I hadn't had in a while either.

Then September hit. I also had 6 headache days and 6 fatigue days. (so in 61 days, I had 12 headache days and 11 fatigue days). Four of those fatigue days were in a row and one of them was so bad that in the middle of the day I fell asleep for 3 straight hours. That hasn't happened in I don't know how long. Then to top it off, this past week I have experienced ankle, hip and hand pain. So I was very happy to be able to talk with my LLMD about them today.

Between my symptoms and blood work, we decided it was most likely that my immune system is depressed again. Therefore, we need to boost it. We've been trying to boost it with LDN, but it obviously either isn't working or I'm not taking enough of it to be beneficial. To top it off, I've been having those headaches. We aren't sure if it is Lyme or if it is LDN so I am to stop it for about two weeks to see if I notice a difference in the frequency of headaches. I'm to restart either Beta Glucan or another supplement that I have that is supposed to boost immune support.

My treatment plan for the next few weeks isn't really all that complicated. I'm to continue everything I've been doing, but increase my oral vitamin C and exchange the LDN for the other stuff. Then I'm too add this stuff called Borrelia Series. I really am not quite sure what it does, but in 2007 I did the one called Bartonella Series. I may Herx on this. I may not. Basically if I herx, it means that my immune system is depressed enough that the borrelia bacteria has come back out to play. If it IS back for fun & games, I have to do a little killing action by continuing the series for 4 boxes.

In addition to these series of vials, I will be doing 2 or 3 IVs. I've done these IVs before and if I herx on them, I will also know if the borrelia is back to play. I had them when the Lyme wasn't in action at all and basically felt no bad effects from the IV. I was supposed to get one today, but wasn't hydrated well enough for them to get an IV stick. So on Tuesday I go to get a treatment.

In addition to these, my doctor wants me to get HBOT. I have heard this term many times and for those of you that don't know what it is, it is the Hyperbaric Oxygen Treatment Chamber. I get into a small thing that gives me lots of Oxygen? Honestly I really don't know what it does, but it's supposed to help. I'm supposed to do 4 days in a row at 90 minutes each "dive." So all in all:

2 to 3 IV's of Vitamin C
4 HBOT treatments
10 vials (up to 40 vials) of Borrelia Series
Mixing it up for two weeks other supplement instead of the LDN Cream.
Increasing Oral Vitamin C.
Keeping on the other supplements I'm already on.

OOOOO and do this saliva test. Yeah I have to spit into four vials. Weird huh? Almost as weird as the time I had pee in my fridge!

And while I know they don't read the blog: I have to give a shout out to a few people that made today go a little smoother.

1. Dr. P. You are my hero. I would not be alive without you.

2. Jennifer (IV lady). Thanks for not sticking me more than once after you realized I wasn't hydrated enough.

3. Rob. to my best husband (and my only husband!), you listen even when I think you're not listening. You know what I need even before I do. You rock!

4.John - to my best friend, you make me snort when I laugh even when I am ready to cry. You give the best hugs especially when I need them.

5. Alisa, Whitney and Melisa, you three girls gave me the Lyme support I needed today. I don't tell you enough how much you three mean to me. I'm blessed to have the best Lyme friends there are.

Saturday, October 1, 2011

Feeling Discouraged

My LLMD appointment was today.

I'm Feeling Discouraged, but Encouraged if that makes sense at all.

I'm too tired to explain right now.

Explain more tomorrow.

Please pray. Thanks.

Tuesday, September 27, 2011

In my Friend's Memory

About eleven years ago, I met this woman. Eva Mae. She was a fiesty spitfire. She had more energy than anyone I had ever met. What I didn't know at the time was that she had cancer. I was so focused on her boundless energy that I didn't realize she was dying. She quickly became one of my best friends. Our age difference was a huge one. In fact, her daughter and I were only one year apart in age (exactly).

When I would get to work, her smile was the first one I found. There were no other faces that I wanted to see. I wanted to see my friend. I started to have some health problems, but because I knew she was facing her own struggles I didn't want to tell her about my problems. Then one day, she caught me off guard. She had gone over to Hallmark and picked up some balloons for me. She somehow saw through my spitfire personality and knew I needed some cheering up. Little did she know, her smile was all I ever needed.

We spent our time at work cheering each other up. She would hem up pants for me and surprised me occasionally with new clothes. She would smile at me and it would light up my entire body. Our smiles were contagious. Our laughter was contagious. One time she brought me the most beautiful gift. Actually I have three reminders of Eva in my home. One is a photograph of her and her beloved. It sits next to a picture of my family. The other was a phrase framed that says, "Your friendship is the nicest gift of all." Truer words were never spoken. And then, there is that angel. The angel that started it all. She gave me a gift of Sarah's Angel. It had two angels next to each other. It plays the music, "You Light Up my Life."

It hurt my heart when I decided to quit because I knew I wouldn't get to see her every day. I called her every week to see how she was doing. I would stop by occasionally and bring her little gifts to work. When my health problems became overwhelming I'd call her to get a reality check. She would ask me all about my problems, I'd ask all about hers and her beautiful granddaughter.

You see the most special thing about Eva is that all she asked God for when she found out she had cancer was to be given the chance to see her daughter graduate high school. Well, not only did she witness this, but she witnessed her daughter graduate college, get married and have a daughter. She felt that every day was a gift of God. She taught me that too. God gave me a gift when he gave me Eva because she taught me that every day was a gift from God, no matter how painful they were.

You see, I have been thinking about her all month long. It was six years ago today that she passed away. I got to tell her goodbye the week before. She called to talk. And she said the words that are etched on my heart. "You are a huge blessing. I'm glad God gave me you." She went on to give a pep talk that kept me going from September 2005 to March 2007. We exchanged many I love yous.

I miss you Eva. So much. Every Day.

Monday, September 26, 2011

May 2007

So I'm going through old emails. Trying to delete things. I have over 3,000 messages in my sent folder. So I am starting simple. I'll take 26 days to work through it. One letter per day. Yesterday I deleted most of the A's. Today I tackled the B's, but I read some of them. My heart pitted into my stomach. I read this that I had sent to a friend in May of 2007. This was a couple of months after I was diagnosed with Lyme.

"Last night was absolutely horrid. I even took pictures of my face. So I got into bed and notice all these little small reddish purple dots all over my skin. I think, "That's odd."In an instant, my elbows start giving me lots of pain. It jumped from one joint to the next. The pain was excruciating and the bumps were getting to become a brighter purple. Within moments, I start feeling nauseated.

I got up. I had explosive diarrhea. Afterwards, I noticed my face in the mirror. Those red/purplish dots are everywhere and I have a huge rash on my face. I get back in the bed. All the sudden I knew if I didn't get up right away I was gonna have a huge mess on my hands. It was horrible and wretched. I have never thrown up that hard or that much. The purple dots on my body slowly go away. My face is slowly returning to normal. This moring the rash on my body is completely gone (except this little pimply dot looking things which are almost always there anyways),but the dots around my eyes are not gone. I thought once I started treatment that I would feel better and that these episodes would stop. When will these things end? How long is enough? I'm so tired."

I don't remember this specific day, but I remember days and months and years like this.

Sunday, September 25, 2011

24 minutes of shopping

So I showed you the one shirt from my 24 minute shopping experience. Here is the 2nd shirt. I got it for the low price of 12 dollars. Yes it came with the belt. Yes the lace paneling is in the shirt and not a separate piece of clothing.



And YES, that's a new "design" on my necklace. ;) I decided to simplify the necklace with the plaid design of the shirt.



P.S. I got the 30% sticker on the Kohl's mailer today! That's like hitting the jack pot since I usually only get the 15% off sticker.