Sunday, May 30, 2010


It is hard to notice growth when you are around something every day. I'm really talking about physical growth, but the same can be said about spiritual and emotional growth as well. Today, it hit me that things change gradually each day until eventually it is hard to remember what things looked like in the beginning.

Today, I went back home. I feel so at peace there. There is nothing else like it. I feel 12 again when I walk through the doors of the church and it is all I can do not to come forward when the pastor invites the children to come up for the children's sermon. Alas somewhere along the way, I grew. I am around me every day. Obviously, there is not much choice in the matter. When you are around something so much, growth is not something you notice until it hits you between the eyes.

Today while in the Upper Room Sunday School class, a lady called me over (well she accidentally called me my Mom's name several times even though she knows very well that I am Jennifer.) She pointed out the window and pointed to this tree right outside. She told me the story about how my Mom planted that apple tree when we lived there. You see when my Mom planted that tree, that tree was merely a twig. My goodness, it had grown so much since we left. I imagine that those that lived there saw it grow over time and barely noticed it's growth. I also imagine it's the same with children that grow within the church. If you aren't paying attention, one minute a child is born and the next they are off to college.

The thing that always bothered me when we left is that I wondered if people would remember me later. Was I invisible so that people didn't notice that I had even left or had I left my imprint on that small town? I realized today that we did make an impact. We left behind this tree. A tree that is still growing every day.

Saturday, May 29, 2010

My New LDN

In August of 2009, my LLMD wanted me to take LDN. I started it in August, but after a couple of nights (I'd guess 5) .... I couldn't continue taking it. It took me until September to actually get the nerve to take the LDN.

Well it wasn't long after that, when I stopped. The nightmares continued to wake me up. I am the kind of person that does not function of basically zero sleep. I'd fall asleep and then have a nightmare or very vivid dream. The dream would wake me up. I would be awake for hours and finally fall back to sleep in which the cycle repeated itself. I mentioned the difficult dreams in the next appointment and I thought if I just tried a little harder it would work. Well, it didn't. I just couldn't function because I wasn't getting good quality sleep.

So I stopped and put it on the back burner thinking that it didn't matter anyways. I began to get a little cocky thinking, what does he know anyways. It's my body and I feel great. So I stopped it. Um yeah. Apparently he knows a lot! (DUH JENNIFER) In March I had my blood work and of course I just found out the results weren't desireable. While I was there for my husband's appointment, we discussed that I have not taken the LDN because of the terrible lack of sleep it caused and he mentioned that in July he would have me start 1mg of LDN instead (which I'm sure THRILLS my reader Anna ... now I'm going back to old posts I remember the messages you left me.)

So when he read the results of my blood work, he immediately phoned in a prescription for the new 1mg amount. Well I decided that this was the perfect weekend to start. So last night, I took a deep breath and a deep prayer and started my LDN journey. First I will say that I did have dreams. I even remember a bit of one of them. It included a really small baby that I was trying to keep safe from four evil women that I met while at Sbarros. They kept stealing the baby and I kept rescuing her. I called her "Squirrel." The other part of LDN that drove me nuts was the NOT sleeping. Well I did wake up a few times last night, however it was storming here. So it very well could have been the storms waking me up. I feel pretty well rested this morning which is more than I ever felt on 4.5 mgs of LDN.

My husband is on the 4.5 and he said the dreams tapered off around week 2 so I'm hoping that after 2 weeks that my dreams will taper off as well. The good thing about the 1mg of LDN is that if in July my LLMD wanted me to try to increase it .. I'd have small increments to be able to try. 1mg to 2mg. So anyways ... wish me luck. I need for my immune system to kick in. I had not really been paying attention to how weakened it had gotten, but in teh last few weeks I keep getting an almost cold. I'll get the "cold" and after a few days, my immune system kicks in to fight it. I feel better for a day or two and then my immune system gets lazy and stops fighting for me so I get a new "cold."

The worst part is that I really want to see my family, but know that I shouldn't be around them for two reasons. One: I wouldn't want to give them something they couldn't fight off. Two: They could expose me to somethings that I couldn't fight off. Sometimes I think I should just live in a bubble. :P I'm so proud of me though. I started the medication the very day I got it! That is truly a first for me.

Edited to add:

I wanted to go and find out exactly what number I was looking for that encouraged my doctor to prescribe LDN so I'd know what to look for in the future. The thing he was looking for was "Natural Killer Cells," but what exactly does this look like on the paper? Well in Spectrum Labs, I believe it is the Absolute CD56.

First know that the normal range of Absolute CD56 for Spectrum Lab is 76 to 570. The LabCorp Range is much lower than that at 24 to 406. I imagine the closer to the MIDDLE point of the range would be better so to be clear: the MIDDLE point of Spectrum would be 323 and the MIDDLE point of LabCorp would be 215. (told you I'm a number's girl) With that said, here are my past results. I believe it was in the middle of 2008 when he discovered the benefit of testing all of these CD numbers (like CD 57 that a lot of Lyme doctors put stock into ... my doctor tends to put stock into the CD56 instead). To put all of these in perspective, my husband's number for this same test was 277.

Date: 8-31-2008 Spectrum Lab: 125 Range:
Date: 2-25-09 LabCorp Lab: 132 (range was diff than spectrum)
Date: 8-19-09 Spectrum Lab: 103
Date: 3-10-09 Spectrum Labs: 72 (first time it was LOW)

The %CD56 normal range at Spectrum is 4 to 27. The LabCorp range is much lower than that at 1.4 to 19.4. MIDDLE point for Spectrum is 15.5. MIDDLE point for LabCorp is 10.9

My %CD56 was only 8
My %CD56 was only 6 (at LabCorp)
My %CD56 was only 7
My %CD56 was only 6

Thursday, May 27, 2010

Sweet Silver Lining

My new favorite song:

By Kate Voegele called Sweet Silver Lining

I'm going home
Downhearted and hoping
I'm close to some new beginning
I know
There's a reason for everything
That comes and goes

But so many people are looking to me
To be strong and to fight
But I'm just surviving
I may be weak but I'm never defeated
And I'll keep believing
In clouds with that sweet silver lining

Most days
I try my best to put on a brave face
But inside
My bones are cold and my heart breaks
But all the while
Something's keeping me safe
And alive

But so many people are looking to me
To be strong and to fight
But I'm just surviving
I may be weak but I'm never defeated
And I'll keep believing
In clouds with that sweet silver lining

I won't give up like this
I will be given strength
And now that I've found it
Nothing can take that away

But so many people are looking to me
To be strong and to fight
But I'm just surviving
I may be weak but I'm never defeated
And I'll keep believing

But so many people are looking to me
To be strong and to fight
But I'm just surviving
I may be weak but I'm never defeated
And I'll keep believing
In clouds with that sweet silver lining
Sweet Silver Lining

IT's BACK!!!!!!!!

My favorite show starts again tonight. I'll see it tomorrow and I can't wait!

So You Think You Can Dance!

Wednesday, May 26, 2010

A little get to know me.

My middle name & my mother's middle name are the same, but spelled differently.


Not particularly.



I hope so. :o)

It depends on the people around.

Nope. No Adenoids either or Gallbladder for that matter.


Most of the time I don't.

I'm stronger than I have ever been.

Chocolate Chip Cookie Dough or
Mint Chocolate Chip

This is going to sound really strange, but their smell.


It's been raining too much for my taste recently.

Sweet Tea without Lemon

White Avias

Cream of Wheat

As The World Turns on TV

Lime Green

Homemade Macaroni & Cheese Baking

My Lyme friend Sarah.

College basketball ~ specially UNC



No, only glasses

Anything with Cheese: Mac & Cheese, Cheese Sticks, Cheese Cake. ;)

Happy endings

Under Our Skin Documentary






I'm not reading anything right now.

3 Puppy Dalmatians

Dancing with the Stars and The Bachelorette

The Ocean.
Don't have a preference.

To the beach


I talk on the phone well. ;)

in a hospital.

Oh you wanted a specific state?
North Carolina!

**I tag anyone who wants to play along..
If you do play along please let me know so I can read your answers..

Tuesday, May 25, 2010

"Fatal tick-borne cat illness on the rise"

This morning on WRAL (my local news station), they had an interesting report on a tick borne infection transmitted to CATS. I dont' want to copy the entire newsarticle, but here is the link to

"Fatal tick-borne cat illness on the rise."

This is what I found interesting:

Dr. Adam Birkenheuer (the vet) said, "We have already seen three cases in the past two weeks, which is pretty remarkable for an infection that is not ‘supposed to be here."

Did more research and apparently it's transmitted through the American Dog Tick which causes Rocky Mountain Spotted Fever in humans as well as Cytauxzoonosis and RMSF in animals.

Monday, May 24, 2010

Do you believe in "ghosts?"

Do you believe in ghosts? I'm not talking about the little fellow walking around with a sheet on. I'm talking about spirits of those that have gone on to Heaven.

You know that place of consciousness right before you wake up?

I saw Daddy George this morning right as I was waking up. He was taking my photograph. When my eyes opened all the way, I realized cognitively he wasn't really there and he disappeared. Then I realized he was gone and it hurt all over again as if I had just received the phone call.

I hate that feeling more than any other feeling I get. That punch in the gut feeling. Wake up thinking someone is alive and well only to remember that they have passed on and the punch of grief hits you again. I'm so glad that I know he's in a better place.

Sunday, May 23, 2010

Looking backwards

I have been so busy looking at the lab results since Saturday morning that the numbers started to blur. Since I'm a Number's Girl, I decided to get organized and look at all the numbers. So I pulled a pile (we're talking HUGE pile) of papers and started sorting them. Doctors Receipts, Lab Reports, Insurance Papers, Symptom Papers, etc. I had already sorted some a little over a year ago into two notebooks. So I punched holes into the latest papers and put them in the notebook.

One of the tabs I have is "My Symptoms." Now really I don't have a whole lot in that section because I keep everything on my computer, but I did have a few papers printed out. However, there was one page that caught my eye. It was August & September 2008. It all started on August 18th. I had a simple PICC Line bandage change. By the next morning, there was pus all under my bandage and the bandage came up. I had only had my PICC line for a month. I was anxious that I was getting an infection already. I went in for another bandage change on the 19th.

I wrote, "On the 26th, I got lost going home. I couldn't think straight. I was extremely emotional and cried often frustrated with my limitations." The next day my blisters were healing and dried out with the new bandage regiment. My arm was great for a few days. I thought I was in the clear. On September 2nd, I had my IV Glutathione and a dressing change. My arm looked wonderful. All of the blisters had dried out.

I wrote, "Dead skin easily came right off as M cleaned the area with alcohol. Noticed right away upon arriving home that it was itching. Later that evening it started hurting and was very itchy." It was at that time that I tried to go to sleep, but woke up in pain from the itching. I attempted Benedryl, heat and ice to stop the itching. However, it just wouldn't stop. I begged my husband to change the dressing at one in the morning. I got about 2 hours of sleep and when I woke up my dressing was covered in pus. I kept an eye on the area, but by 9:30 there was moisture under the dressing. I had to rush to the office for a dressing change.

By the time I got home (only 30 minutes later), it was already leaking. I went back later for another test and got a third dressing change for the day. I remember that day. I honestly thought I might die from an infection. I thought I was about to lose my picc line after only having it for a little over a month. The next day I went back because my gauze was wet again and an appointment was scheduled for the hospital for hte following day. I just knew that September 5th would be the day they would pull my PICC. I just knew that I would no longer get any treatments. However, the doctor allowed me to keep it in and gave me instructions on cleaning and a new kind of dressing for my picc line.


This is why I don't want to look backwards. I had so much trouble with my PICC line. Allergies get more severe with time. If I was that "allergic" to the solutions then, what makes me think that this time would be easier? I know I'm jumping the gun, but it was in January when I was told if certain lab works didn't improve significantly that I would need IV treatments. Those numbers didn't improve hardly at all. I'm a little worried, but trying not to let those worries get the best of me.

Go ahead, Bring the Rain

I can take it! I did it once before, I can do it again.

Saturday, May 22, 2010

It dropped

** if you read this before 5:45pm, read it again. I have edited it since then **

This morning I finished up my message about waiting. I wrote this:

"That was in 2007. Here we are in 2010 and I'm still waiting. Waiting for the other foot to drop. I have been pretty well the last year or so. I've been told that stressful events can cause relapse."

My husband's LLMD appointment was this morning. At this point, we're mainly concerned about his liver, sinuses, yeast and weight. During his appointment, we discussed how we've not been able to really keep on top of our dietary needs because of all the stressful events over the last month. Of course, my LLMD was worried about my own relapse. We briefly discussed the LDN that I'm supposed to be on. Well LDN causes me to have serious nightmares that keep me awake. So we discussed how when I come to the office in July that he will probably give me a prescription for a smaller dose of LDN in order to keep my immune function in check.

As my husband and I were checking out, I asked the office staff if I could have a copy of my most recent lab results. I figured if I could take a peek at them, I would know exactly what my LLMD would say in July. I wasn't worried one bit because I have felt pretty good and in March when the labs were taken I felt awesome. Well they ahd trouble locating the labs and wound up calling the lab to get them faxed over. I glanced at them and my stomach hit my feet. I ran back to the nutritionist's office to pick up one specific supplement that I knew the doctor would have me come in for once he saw the labs. I can't believe the other foot has dropped. I'd say it's unbelievable, but it really isn't. I expected it, but I didn't. If that makes any sense at all, you're better off than me.

There are several results that are concerning. The first thing that jumped off the page was my blood counts themselves. My Platelets are in the toilet. My Hemoglobin & hemacrit are also low. My iron level is not where it needs to be either. It's not under the normal limits, but this is one that my doctor prefers to be higher than the lower limits of normal. This is one test where my doctor might be led to suggest IV when I go into the office in July. As you may recall, I do not want any more IV's. My arms have suffered enough and all the staff is new. I really don't want a newbie messing with my arms. Newbies just don't understand the requirements to start IV's on my arms or even simple blood draws. I mean I could give them the benefit of the doubt, but I've been through blood draws the last 15 years and IV's the last 3 years.

My CD 3 was too high and my CD56 was too low. I really don't understand what these mean, but I get nervous when anything is out of whack. My Vitamin D is also in the toilet. This one we just are having trouble getting it to go higher. I usually take 4,000 to 6,000 of Vitamin D and now I'll be on 10,000 to start.

I got the results a little before 10am. By 12:35, I've received two phone calls from my doctor's office. One was to tell me that my prescription was in the process of being sent to the specialty pharmacy in Florida and the other to increase a supplement I had just purchased (the Vitamin D). I'm still waiting for the pharmacy to call. I hope they call soon so I can start the new medication.

I hate that the other foot has dropped. Weird thing is: I feel pretty good.


Kind of ironic that I had to wait to post this message. I thought about two months ago that it would be kind of neat to write a post about waiting. After all, haven't us all at some point or another had to exercise the skill of waiting? Well I couldn't think of exactly what I wanted to write so I have written bits and pieces of the last few months.

Ten years ago (on May 19th), I got a phone call. After that moment, I began waiting. I had to wait for my new husband to drive home from work and then wait for what seemed like DAYS to get there, but honestly it probably only took 60 minutes (don't tell the cops because I think it normally took about 80 to 90 minutes to get there). Then I got there and saw tears streaming down my stoic Grandfather's face. Everyone was waiting. Everyone was holding their breaths. Secretly, I was praying that He would wait. Wait to take her home. I felt she wasn't done yet. She hadn't taught me what I needed to learn. Instead, I just had to wait. Wait to hear that my Granny, my very special friend in life, had passed away.

On the other end of the spectrum of life, I have friends who waited for a child. They waited for God to provide them with a child they would love. Each friend's case was different, but it was all the same. They desired to have a child to love that they could call their own. Some of those friends are still waiting for something to happen, while others are newly pregnant and while another is finally taking that ride of motherhood bicycling with their recently turned one year old child. They waited for the good to outweigh the bad. You can find many blogs on women that are showcasing the pain of their wait and the desires of their hearts.

Then there is kind of a daily wait. A wait to find out answers. Someone has a question and the answer isn't given. Each day that passes waiting on the answer causes anxiety and stress. For me that question was, "What is causing me to be so sick?" For me the answer came 12 years after the first question was asked. I had to wait for an answer. I had to be patient. From 1995 to 2007, I just waited. Some years, I was actively looking for an answer. I went from doctor to doctor trying to find out what was causing my sudden increase of symptoms. While other years, I just tried my best to ignore the screaming question. "What is wrong with me?"

For a while, I let the doctors placate me. I listened to every word and followed every advice to the letter. Here is just a sampling of what I went through over the 12 years before diagnosis. I have some dates for specific events because I do have some old receipts and diagnostic results. This is how I can piece together a time line.

Neurologist 1: Epilepsy Medicine (August 1995 to November 1995)
Neurologist 2: (November 95) Go off the Epilepsy Medicine , use talk therapy (I was released when the 2nd one wisened up and said, "I don't know what is wrong with you, but it ain't anxiety. You handle life very well) and reduce stress. Because of the 2nd Neurologist not listening, I decided to not really see any physicians for a while. Occasionally I'd wind up in the facility on college campus, but he's prescribe for symptoms and send me on my way. (talk therapy was from November 95 to sometime in 96)

Urgent Care Doctor 1 : (sometime in 2000) It's simple, "You're anorexic." (I didn't listen to him. He was an idiot)

Nurse Practitioner 1: (sometime in 2000)Thyroid Disorder (let's test it three times to make sure)
Nurse Practitioner 1: (sometime in 2000)It's Anxiety (use Antidepressants, Anti-anxiety and reduce stress).
Nurse Practitioner 1: (later possibly in 2002) Use Talk Therapy (are you kidding me, again?)
Nurse Practitioner 1: (it's hard to remember I think it was 2003) Possible Breast Cancer

Ultrasound Tech 1: "Ooooh" when she finally saw the lump.

Surgeon 1: It was bigger than I thought (scares the crap out of me. I was convinced I had cancer). She removed both my breast lump & birth mark and after a few weeks deemed that neither was cancer.

Urgent Care 2: (April of 2005) Allergies to mold & dust mites. That's what is causing all of your sinus infections. I thought my wait was over.

Hospital 1: (February 14, 2006) Ignores symptoms of gallbladder problem and gives me an IV of ativan and sends me on my way.

Couple of weeks later Hospital 2 performs emergency Gallbladder surgery on March 28 2006. I thought my wait was over. I thought I had my answer, but unfortunately I was completely wrong.

I went back to the Surgeon for my post op on April 3rd and things were healing nicely. Then all the sudden my incisions began to look really gross and I had pain as if it were the day of surgery. I went to my regular physician who performed blood work and sent me back to the surgeon who then sent me back for an overnight stay at the hospital. They said that I had some sort of infection and gave me IV antibiotics. I had to wait to feel better. (This was on April 6, 2006)

Urgent Care 2: (April 26, 2006) Gave me a diagnosis of Lyme Disease after a tick bite. Prescribe me 2 weeks of antibiotics with instructions to wait for the test results. They called on May 2, 2006 to tell me that my tests were negative. However by May 17th, I was falling asleep at the wheel and it hurt to walk. My knees were swollen and my tick bite was inflamed. Doctor gave me 2 more weeks of antibiotics saying my test results were negative, but they expected that. I thought my wait was over. (for those that are interested: First Antibiotic was Doxycycline 100 mg 2 times a day for 10 days. Second one was Amoxicillin 500 mg 3 times a day for 10 days).

Nurse Practitioner 1: By the end of June 2006, my NP had ordered Rheumatoid Arthritis test, Antinuclear Antibodies Direct test and another Lyme test. She told me that Lyme Disease can be tricky to treat, but since I was given 4 weeks of antibiotics pretty much straight that my case should be "cured." However, I had a serious ear infection that could be causing my symptoms. Just to be on the "safe" side for residuals of Lyme & to cure the ear infection, she prescribed me four weeks of antibiotics. I thought my wait was over.

Nurse Practitioner 1: Now I have been having symptoms since the tick bite, but my NP was looking at other possibilities. By the end of September she wanted to give me some anti-inflammatory medication for your joint pain. This should help. I wound up going back because the diarrhea was so bad that I couldn't stay on it. Plus it didn't help with my joint pain in any way. She gave me a sample of one and it worked better so she prescribed it. The problem was my insurance wouldn't pay for it until I had tried 5 other alternatives first! What a pain, but I thought my wait was over. I got the note from insurance denying Celebrex the 6th of October in 2006. My NP was on top of things and pushed this through very quickly. I tried the alternatives in a very short time and by October 13th they approved the Celebrex.

Nurse Practitioner 1: When I wasn't much better in a few weeks, she said she had done everything she could do for my possible Rheumtoid Arthritis. She sent me to a

Rheumtologist: (November 2006) It was at this point that I stopped waiting patiently and started waiting actively. We had questions for this lady. Questions we hoped she could answer. Our question was, "How come antibiotics make the symptoms go away?" Her answer, "That shouldn't happen." Her other answer was to keep on the Celebrex and to wait for my blood tests. She was ruling out several conditions and one was possible Lupus. I went back and my blood tests were normal. She told me to continue the Celebrex and start Neurontin for my nerve pain and come back in six weeks. We were tired of waiting. We didn't go back.

Nurse Practitioner 1: I was beginning to lose hope in her even though she had taken me through years of stuff. I mentioned one symptom and a light lit up in her eyes. She had a feeling she knew what was wrong with me. She just needed an MRI to confirm and she decided if it were that, I would need a Neurologist so she set me up an appointment.

MRI Tech: Asked me to stop twitching while having an MRI on my brain. The problem was that was one of the reasons I was there was to learn why I was twitching. How could I stop twitching when that's what we were trying to diagnose? IF I could turn it on and off like a switch, then I wouldn't need an MRI.

Neurologist 3: Reported that he saw damage on my MRI. He said he wasn't sure if it was due to an illness or past trauma (could be past seizures I was having or when I hit my head at college).

Neurologist 4: Said that the MRI was remarkedbly normal in every way. This is when MY lightbulb went off. How could one doctor say the MRI was normal and the other say it was not? Neurologist went over my history and decided to perform a couple of tests right then. An EEG to rule out seizures, and a couple of really painful tests. I was thankful that I didn't have time to research the tests or have to wait for them because I really think I would have chickened out. In the mean time, increase the dosage of Neurontin and he'd see me after the tests were completed.

EEG Tech: What exactly are we looking for (after 20 minutes)? I explained the situation and they continued to look. They really wanted me to sleep, but who can sleep with all those electrodes on?

Painful Techs: One shocked the mess out of my legs and the other stuck needles in my legs. Yeah let's just say I'm glad I didn't have to wait. The techs weren't supposed to say anything, but they did. They told me not to worry.

Neurologist 4: Told me that all my tests were normal. I didn't have MS, Brain Tumors, seizures, ALS or any other thing they were testing for. He wanted me to continue the medication to wait to see if my symptoms would improve. I was done waiting.

Lyme Guru 1:March 1, 2007: After 12 years of waiting to hear the words, "You have Lyme Disease." made me go over the moon. I had no idea what I was in for. IV's and PICC Lines and supplements and controversy.

That was in 2007. Here we are in 2010 and I'm still waiting. Waiting for the other foot to drop. I have been pretty well the last year or so. I've been told that stressful events can cause relapse. I have gone through one thing after another this last year. My friend died, my school closed, new school with new friends & students, my grandfather's ill health, going back to a 40 hour work week, my grandfather's passing, my Uncle having heart surgery and the most recent stressful event that had me see my life flash before my eyes.

I was driving home from my 8 hour day at work (woo hooo I'm well enough to work a full 8 hour day!). I stopped off at an exit to get some gas since I knew I wouldn't make it home otherwise. While I was at a complete stop (waiting none-the-less), my car had sudden acceleration. It took off on it's own. My life flashed before my eyes. Instinct took over and right before I was going to throw the car into Neutral and grab my phone for 911, the brakes decided they were going to work and my car slowly came to a stop.

I'm fine, the car is fine, people that almost slammed into me that were honking and cursing at me in their convertible as they flew past ... well I hope they are fine. The car will be going into the dealership on Tuesday. They say that I only have the "mat recall" Toyota model, but it was blatantly obvious to me that my car had a mind of it's own on Friday. So I will be waiting to drive my beloved car until they do something about it.

I wonder if Toyota will give my husband the run around like the Doctors gave me the run around. I don't have 12 years to wait for my car to be diagnosed.

Friday, May 21, 2010

In process

I'm in the process of writing a new post, but it's stuck in my head and I can't get the words to come out correctly. So you'll just have to wait until I finally get the words out through my fingers.

Wednesday, May 19, 2010


My Uncle seems to be doing well after his surgery. I haven't been by since I've had some troublesome allergies and I don't want to pass my germs on to the family, but things seem to be going as planned.

My friend's surgery also seems to be a success as well. They did find some cancer in her lymph nodes, but they got it all in surgery. She'll probably still have to have chemo/radiation or something of the sort.

Say another little (big) prayer

Please say little prayer for Carol. She found out a few weeks ago she has breast cancer. She has surgery today.

Tuesday, May 18, 2010

Say a little (big) prayer

My Uncle has having heart surgery today. It was unexpected as of this past week so please pray for the surgeon's, nurses and my family. Thanks.

Saturday, May 15, 2010


Nothing makes me angrier than a physician that won't be proactive in treating tick borne illnesses. In less than a week, I know of one two three people that have been bitten by a tick. In one case, the child still had a bit of the tick inside her. The physician recommended that the tick would just fall out eventually. I was irate. Actually, irate doesn't even begin to describe it! I wanted to go ring that physician's neck!

What I don't get ... Physicians will give antibiotics (Doxycycline to be more specific) for YEARS to someone who has ACNE ... yet they won't give it to someone who has been bitten by a tick. On our local news station they were just speaking about how they were now giving Antibiotics to those with Irritable Bowel Syndome ... yet they won't give it to someone who has been bitten by a tick.

I am so frustrated. I want to share my story with the world. If my parents had taken me to a physician in 1995 when I was bitten, I might not have a story to tell. Then again in 1995, they would not have given me the antibiotics I needed to eradicate the illness promptly. They won't even do that in 2010. Who knew that something so small could pack such a powerful punch? My only wish is that the three ticks that were biting this week were not carrying any illnesses. My other wish is that doctors would get educated about Lyme Disease.

Open Eye Pictures has a deal going on right now (May 2010). It's called a Doc for a Doc. Buy one DVD and get the 2nd one free. I bought my copy. I've had it (and the free one) in my possession the last week, but today I was sparked to purchase two more. So by Friday, I should have six copies in my house. What do I need with six copies you ask? It's simple: EDUCATE 2 ERADICATE!

Buy one today and get one free.

Also check out my friend's Lyme Shirt. Click on it to buy and to check out her other designs.

Thursday, May 13, 2010

Mystery ER

Here is the Mystery ER showing Lyme Disease on my friend Laura. Part 1 & Part 2.

Wednesday, May 12, 2010


Now the worst disappointment I ever faced was a choice that my parents made when we moved from the only town I ever knew (dramatic enough?) to another town that might as well had been in another state.

I just said this in a post on Sunday about Strong Mothers. More specifically about MY Mother.

Well as if God was trying to say to me, "See it was the right decision to move there" I had two phenomenal friends call and ask to just hang out. As I was sitting in the restaurant with my best friend talking about life for almost 2 hours and then sitting in a car with another listening to music and talking about nothing for the same amount of time, I realized how extremely blessed I am in the friend department.

My best friend and I see each other often (sometimes twice a week, but sometimes only once a month ... still that's often). Now the other friend and I don't get to see each other often at all, but when we do it's as if no time has passed at all (I think the previous time we had seen each other it was about 18 months ago. I dunno really I remember I still had my PICC Line in).

Sunday, May 9, 2010

Strong Mothers

I have a lot of memories that remind me only of my Mom. Usually these moments revolve around disappointment. Now hold on a second .. this isn't what you think. This is not one of those posts where I talk about how she disappointed me time after time. This is a post about how I would have disappointments and she would fix them. She always fixed them or at least she tried.

Now I don't recall exactly what grade I was in, but I recall a very disappointed ballet dancer. I do not recall the dance, but I do recall the beautiful pink outfit I was to wear to the recital. I know she knows exactly where I am going with this memory. My entire class was so excited to get our new silky feeling pink outfits and they ran really late. Well I don't remember how it happened (and I don't even know that I ever knew the reason), but the entire classes outfits were way too small. When I say too small, I don't mean just a little bit too small.

I mean my particular outfit didn't even cover up what it needed to cover if you know what I mean. I already had visions of all of us dancing in our practice leotards and tights OR worse 1/2 nekid on stage. I think I remember a switcharoo trying to take place to see if anyone's outfit would fit, but if I recall correctly it was a no go. What I do recall is that my mother ... saw my disappointment and fixed it. I don't know if she fixed it for everyone, but she fixed my disappointment. She simply cut out the crotch of my poorly fitted beautiful costume and cut up one of her own dresses that had taken up residence in my closet for my own dress up necessities to sew in a brand new crotch so that my outfit would cover my entire body. In that moment, I knew that my Mom was a genius!

My Mom was also not the kind of mother that would go out of her way to give me her opinions on my friends. I always had a say in the friends I chose. I remember a few people I chose to have in my life that I know she did not care for. She would always remind me that I had the right to choose my friends and even though that person was someone she wouldn't have chosen for me, that one day I would realize that they were not the kind of friends I needed to have. Usuually it only took one or two disappointments in them for me to realize ... my Mom was a genius!

I once dated a guy that I know she did not approve of. This one guy, I couldn't get out of my system. One day, he showed up with his brand new truck (sigh ~ who knew I'd fall for a guy with a truck) and asked for us to talk. Mom gave me a look, the look that only Mom could give and make me feel completely horrible for actually wanting to go. Then she went over and pulled out a 20 and told me to use it to get as close to home as possible if I were uncomfortable and to call home and they would come get me. Well I didn't need the 20, but I did go. Of course months and months later, my heart was disappointed once again. My Mom was a genius.

Now the worst disappointment I ever faced was a choice that my parents made when we moved from the only town I ever knew (dramatic enough?) to another town that might as well had been in another state. I remember time and time again thinking that my Mom was NOT making a smart move. Why would she take me away from the only town I ever knew with some of the best friends a gal could have to move me to this horrible no good very bad town? I mean I had to leave Marie, Jennifer, Leigh Anne, Wade, Melissa, Adam, Erin, Kevin, Angel, Jimmy, Michael and so many others. What on earth could I gain by moving to some podunk town ? Well, it took me years to see it, but my Mom was a genius. ;)

Let me tell you the honest truth. Every guy I dated, I secretly ran through the Mom code of ethics. Before I started dating my husband, I was concerned that my parents wouldn't like him. Why? We met when I was still in high school and he had already graduated college and was holding down a real job. He was a whopping four years older than me. He was a college graduate with a real job. Um looking back, why was I concerned? He had a REAL JOB. I already had a feeling that I liked him more than just friends, but I had to scan him through the Mom code of ethics. I was already in college at this point and had come home for a wedding. Well before I went back to college, we decided to hang out that morning.

He picked me up (on time might I add) and we just had fun hanging out. Decided before I left, I would give him a mom screen and took him inside to introduce him to my parents. Well I'll leave out of the nitty gritty details of their first meeting, but let's just say it was a card of a good time (chuckles under breath). When he left, I felt really good about their brief encounter and thought if he ever asked me out I would definately say yes because my Mom is a genius.


When I was really into the New Kids on the Block, well .. Mom hung tough.

When I was really into Paula Abdul, well ... she was spellbound

Then there was the year years of "BP"and I was stuck on this song .. and this song only! I must have listened to it 10 times a day. Of course I didn't listen to it outloud. I listened to it on my walkman .... and sang it. So she only heard my version of the song.

Thanks for hanging in there Mom. :o)

Since it is Lyme Disease awareness month, I would like to share one article on another Mother. This mother is the wife of a Lyme Doctor and she has an amazing story all her own.

Friday, May 7, 2010

Feel Lyme through my Hands!

First the eyes. Now the hands. Anyone ever see anything like what's on my middle finger? It doesn't go all the way around the finger. Just right as you see it. Lyme Disease is so weird sometimes.

Thursday, May 6, 2010

Number 1 With Lyme,

I wrote this post a few days ago intending to post later, but since today is the National Day of Prayer ... It seemed fitting for today. Before I get into this post though, I want to let you see a part of me that I rarely show. I try to be an open book. However, there are a few chapters that I keep sealed shut. I don't want pity or sorrow so I keep it sealed shut. So here it is:

I have had a horrible day. Down right terrible in fact. This is what I wrote somewhere else:

It feels like I'm in the middle of the ocean and the undertow is sweeping me away. Every time I get one thing accomplished, fifty more things are piled on. I can't keep up with what needs to be done. Feeling rather inadequate at the moment. I had an Asheboro '93 feeling and let's just say that ain't good, ain't good at all.

So with that said, my planned post. One that is much more uplifting and hopefully I'll be able to read it and feel better ... feel less inadequate ... feeling more Jennifer.


You may wonder how my relationship with God strengthened during my illness. I believed from the very beginning that what afflicted me was given to me for a reason. I believed (and still do believe) that God gave me this battle to fight in order to glorify His name. The more my health failed the more I believed that in the end, I would be healed.

God made me a promise. At my weakest, I looked at His promise in the book of Isaiah. Isaiah 4:29-31 He gives strength to the weary and increases the power of the weak. 30 Even youths grow tired and weary, and young men stumble and fall; 31 but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

That is simple. He states it, "But those who hope in the LORD will renew their strength." You may ask if I believe in God (or more poignantly if God exists) why didn't He renew my strength earlier? Well it is simple. He healed me in His time and not mine. Yes, God could have very easily granted a miracle and cured me in a moment. However, that was not my journey to take. He needed me to take a different path. He needed me to be weak so that I could show others my strength. He needed me to be outspoken. He needed me to know weakness so that I could be the strength for others when they were too weak to speak for themselves. He needed me to encourage others to hope in the Lord.

A thousand times I've failed
Still your mercy remains
And should I stumble again
Still I'm caught in your grace

Everlasting, Your light will shine when all else fades
Never ending, Your glory goes beyond all fame

My heart and my soul, I give You control
Consume me from the inside out Lord
Let justice and praise, become my embrace
To love You from the inside out

Your will above all else, my purpose remains
The art of losing myself in bringing you praise

Everlasting, Your light will shine when all else fades
Never ending, Your glory goes beyond all fame

My heart, my soul, Lord I give you control
Consume me from the inside out Lord
Let justice and praise become my embrace
To love You from the inside out

Everlasting, Your light will shine when all else fades
Never ending, Your glory goes beyond all fame
And the cry of my heart is to bring You praise
From the inside out, O my soul cries out

My Soul cries out to You
My Soul cries out to You
to You, to You

My heart, my soul, Lord I give you control
Consume me from the inside out Lord
Let justice and praise become my embrace
To love You from the inside out

Everlasting, Your light will shine when all else fades
Never ending, Your glory goes beyond all fame
And the cry of my heart is to bring You praise
From the inside out, O my soul cries out

Everlasting, Your light will shine when all else fades
Never ending, Your glory goes beyond all fame
And the cry of my heart is to bring You praise
From the inside out, O my soul cries out
From the inside out, O my soul cries out
From the inside out, O my soul cries out.

Wednesday, May 5, 2010

Number 10 With Lyme,

With Lyme, I have shared my story with others and met strangers friends living a similar journey. Without Lyme, I never would have met two of my dearest internet/phone friends. I'm not sure when in the journey I met my two Lyme friends Sarah & Melisa, but somewhere along the way the have become a huge support system in my Lyme life.

When I first started chatting with Sarah online I was concerned that her mother might be a tad worried since our ages are vastly different. We typically just talked about food and health and I would give her ideas for nutrition which apparently her mother just loved! Now, I talk to Sarah generally once a week on the phone about Lyme and Life. I was even invited and attended Sarah's high school graduation. My husband and I spent an entire day with her family.

I became close friends with Melisa online too and we have hung out several times including at Under Our Skin showing in North Carolina. We've eaten lunch together, met up at my our LLMD's office and even gone window shopping at Christmas time together a couple of years ago. We have each had a PICC and/or Port and just completely understand each other.

There are others too. I have a whole group of Lyme friends online that have gone through my same fight and we support each other in ways that no one else can. There is an old saying in the Lyme community, "You don't get Lyme until you GET Lyme." Your family & friends can be kind, compassionate, caring and do everything under the sun, but the only ones that truly understand are those that have been there.

So Lyme gave me people that understood my mystery invisble illness. People that understood that I was telling the truth and when I made statements such as, "It feels like I'm eating lightbulbs sometimes" .. they didn't look at me like I was crazy. In return, I understood what they meant when they said left their phone in the freezer and couldn't find it for days. We also worried about one another if we didn't hear from each other after a few days.

One Lyme friend sent me a small tree for Christmas a few years ago when I was at my worst and couldn't decorate myself. "Zee" knew how important it was to me and sent me such a kind gift. My Lyme friends understand the "spoon theory" and understand if I've run out of energy. They don't get frustrated if I'm too tired to talk, IM, email, call, hang out or if I have to change plans at the last minute. They just understand.

Tuesday, May 4, 2010

Number 2 With Lyme,

When I first got sick, I realized right away that I needed help. I did not have a car to travel from my college campus to the hospitals for blood work. I did not rely on any one person to get me to the hospital for EEG's or Blood work, but several people came to my aide that first semester at school. I began school there in August and by the end of the month I was at the beginning of my illness. I did not have that many established friends so I had to heavily rely on new relationships.

I felt awful that I was needing so much from these new relationships, but they often told me not to worry. There were about three friends that took time to help me often. I stayed friends with all three of them throughout college even after I had my own transportation. In fact, one of the three of them I still talk to once a week on the computer.

Well, when I began heavy treatment I realized I would need some help if I wanted to get well. I would need help from my doctors, from my family and from my friends. Now I really wanted to 100 percent do it all on my own, but I knew that wasn't really an option. At the beginning of the heavy duty treatments, I was going to the office twice a week. After each treatment, it was pretty much required to be carried out of the place and placed into bed. I could barely do anything for myself. My husband would drop me off, go to work for a couple of hours, come back drive me home and then go back to work for a couple of hours. He often missed 2 to 3 hours of the work day when he had to do all of this.

So I had to work it out with family & friends to help. He would drop me off and they would pick me up. I will be completely honest ... I would try 200 percent harder not to look like I felt when family or friends came to pick me up. I wanted to look okay. Inside it felt like the world was going about 500 miles a minute and my brain was going about 5 inches a minute. I would begin to think, "Put one foot in front of the other. Repeat. Don't Drool Jennifer. Don't Drool. Wake UP Jennifer. Put one foot in front of the other. Repeat. Wake up Jennifer. Stop Drooling. Repeat."

Then one day one of my friends that came to pick me up said, "Why are you trying so hard? We know how hard this is. Let us help you." He picked me up and carried me out of the doctor's office. I barely remember things from treatment, but I remember that moment. It was in that moment I realized that they did not care that I felt like a drug addict going through withdrawals that had the flu ... They just cared about me and would do anything to help me feel better.

With Lyme, I discovered how important my friends are to me. I learned who would do and who wouldn't. Who can handle the illness and who could only handle me well. I knew who I could call to complain and who I could call for jokes and who I could call for help.

This video I'm posting is by Connie Strasheim discussing an excerpt of her book "The Lyme Disease Survival Guide: Physical, Lifestyle and Emotional Strategies for Healing," .... specifically how it relates to, "They Will Never, Ever Understand: Accepting Friends' and Family's Limitations."

Monday, May 3, 2010

Number 7 With Lyme,

7. With Lyme, I was given the opportunity to write an article(s) for Public Health Alert.

Without further ado, my recent article The Impact of a Letter.

*for* my Lyme Friends

The Words I Would Say by Sidewalk Prophets

Three in the morning,
And I'm still awake,
So I picked up a pen and a page,
And I started writing,
Just what I'd say,
If we were face to face,
I'd tell you just what you mean to me,
I'd tell you these simple truths,

Be strong in the Lord and,
Never give up hope,
You're going to do great things,
I already know,
God's got His hand on you so,
Don't live life in fear,
Forgive and forget,
But don't forget why you're here,
Take your time and pray,
These are the words I would say,

Last time we spoke,
You said you were hurting,
And I felt your pain in my heart,
I want to tell you,
That I keep on praying,
Love will find you where you are,
I know cause I've already been there,
So please hear these simple truths,

Be strong in the Lord and,
Never give up hope,
You're going to do great things,
I already know,
God's got His hand on you so,
Don't live life in fear,
Forgive and forget,
But don't forget why you're here,
Take your time and pray,
These are the words I would say,

From one simple life to another,
I will say,
Come find peace in the Father,

Be strong in the Lord and,
Never give up hope,
You're going to do great things,
I already know,
God's got His hand on you so,
Don't live life in fear,
Forgive and forget,
But don't forget why you're here,
Take your time and pray,
Thank God for each day,
His love will find a way,
These are the words I would say

Sunday, May 2, 2010

See Lyme through MY Eyes

My eyes are swollen & puffy from unknown substances today.
This used to happen often.
Now not so much, but today a reminder
of Lyme Disease.

Let me allow you to see how I see things without my glasses.
Lyme did not take my vision away. Good ole Genetics did that! :P

Yesterday I allowed myself to lay down all day. I just rested and watched television as visions of my last moments with my Grandfather bounced through my head. Some of those moments were from a week ago Saturday and some of them were from Thursday as we laid him to rest. Around 6:30pm, I was tired. Really tired. I had told my husband on Tuesday that if I stopped I would cry and if I cried, I would sob and if I sobbed I would get myself sick. I knew that no one wanted that (especially ME) so I just kept going and going (and going). Then on Saturday, I stopped. I rested all day.

Around 6:30, I started feeling awful. I decided that since I would be going back to work on Monday that I just needed to sleep. So I slept for 13 hours. I woke up feeling really well. I woke up feeling rested and alive. I got up and realized that something was off though. I couldn't figure out exactly though until I felt my face with my hands. I realized right away that something was really off.

I ran off to the bathroom to take a look and found my face was swollen. My nose, my eyes .. pretty much my entire face was swollen. I washed it off in hopes it would go down soon. It did .. well except the eyes & nose. They are still swollen. Do you know how hard it is to get a photo of swollen (and rashes for that matter)? They always look so much worse in person than in photograph.

In any case, probably good old allergies did this number. Either something new is blooming outside or I'm sensitive to the Peony flower Rob brought in or I'm sensitive to the funeral plants. The only thing "new" to us are the flowers and the ceiling fan. I better not be allergic to the ceiling fans. That would stink. :P

So See Lyme through MY Eyes, my swollen crazy sensitive eyes!

Under Our Skin Offer

Open Eye Pictures is offering a special for the month of May (2010). Purchase one DVD and get a 2nd one free. They are calling it A Doc for a Doc.

For those that don't know, Under Our Skin is a documentary exposing the hidden secrets of Lyme Disease. It is absolutely a wonderful film that I highly recommend. I have seen it in theater and in North Carolina, Carolina Lyme is hosting a screening of Under Our Skin on May 12th. Unless something happens, I plan on being there.

Saturday, May 1, 2010

With Lyme,

In honor of Lyme Disease Awareness month, I would like to create a list "With Lyme ..."

*1. With Lyme, my relationship with God strengthened.

*2. With Lyme, I discovered how important my friends are to me

3. With Lyme, I gained significant inner strength (spirtually, physically and emotionally).

4. With Lyme, I went to the beach on a whim and in a quick few hours turn from a crushed box into a spring.

5. With Lyme, I finally got the courage to go to places I was uncomfortable

6. With Lyme, I faced one of my biggest fears by climbing a light house.

*7. With Lyme, I was given the opportunity to write an article(s) for Public Health Alert.

8. With Lyme, I went home again.

9. With Lyme, I gathered the courage to meet my favorite UNC Basketball Player.

*10 With Lyme, I have shared my story with others and met strangers friends living a similar journey.