Reminder: Pens and Paper don't Feel

I wrote a message back in April of 2009. I thought I'd revisit it and edit it as something happened that made me remember this. No it wasn't on the blog.

*** first this is extremely long and I apologize for that, but God has placed something on my heart that I must share ****

I have to say that I have spent most of my life feeling as if I didn't belong. I grew up in a very small town where I had extremely close friends. Then my family uprooted us and moved. We did not move far, but it was far enough that I lost all of my friends due to our ages (between 6th and 7th grade) and distance. I lived a depressed life from 7th grade until 10th grade when I finally felt like I belonged to a group of people that liked me even if though I was different. However, I still spent most of the rest of my high school years extremely depressed. My best friend now saved my life then. He was not my best friend at the time, but I would not be the person I am now if God did not place him in my path then.

I have spent my life writing: writing journals, writing poetry, writing doodles, just writing. The poetry I read that I wrote in High School (and even college) are some of the most depressing pieces of works I have ever seen. I read them now and can go back to the same feelings I felt then. I hated the computer. The computer guru at college used to say "Oh no not her" when I'd come into the lab because within 15 minutes of me sitting at it .. the computer would die. I could never figure out how to turn a computer on much less write my college papers on them. I didn't belong at college. I had almost seizures daily and people made fun of me behind my back, but when I wrote ... I felt free.

I would sit in the chapel at church and write. Some letters, some poetry, anything to get the feelings out. I always felt better and not quite so alone after writing. It's like the pen & paper were my friends. It didn't matter what I wrote because they would never get mad, upset or offended. My writings never made the pen & paper jealous or happy or anything. The Pen & Paper didn't have feelings. No one ever read them and I suppose no one ever will, but when I read what I wrote circa the 90's it makes me cringe to see what was going through my noggin.

So once I became computer literate and unable to kill a computer in 15 minutes, it became crystal clear that I should write everything on the computer instead of in pen & paper. just write. That was my motto. I discovered emails, Instant Messenger, forums, myspace, facebook and eventually a world of blogging. It opened my eyes to a whole new world of writing. A world in which others could view my thoughts. On one hand, I felt glad to share my inner most thoughts to people that cared ... but on the other hand it made me very vulnerable. Pen & Paper could never get hurt. People on the other hand. They could be hurt by my inner most thoughts.

I knew I would be able to write my inner most thoughts and feelings in Lyme groups and people would understand. About the same time as I found those Lyme forums and groups, I found out about blogging. I thought that I would never blog because I didn't really want the world to read my inner most thoughts.

However I realized in September of 2008 that I had a lot to say. I could educate people who found my little piece of the world about Lyme Disease. The first comment I received from someone asking more about Lyme Disease made my heart feel good. My motto for my blog: Living life as full as I can with the skills that I have and the love I receive.

For now this is what is on my heart & soul. Pen & Paper don't get hurt, but people do.
Sometimes people say things that aren't intended to be hurtful and sometimes I write things that hurt others and it was not my intentions. I must first say that no one that has ever commented on this blog has EVER been hurtful. It was something else that happened elsewhere that produced this lengthy blog. Because when I hurt, I write. I write in journals, write poetry, write doodles, just write on my blog.

The LORD is the everlasting God, the Creator of all the earth. He never grows weak or weary. No one can measure the depths of his understanding. He gives power to the weak and strength to the powerless. Even youths will become weak and tired, and young men will fall in exhaustion. But those who trust in the LORD will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint. Isaiah 40:28-31


P.S.

I need to remember that the people that truly know me love me and that it doesn't matter what someone that doesn't know me at all thinks because as a friend who loves me very much said a long time ago, "If people would really get to know you ... the real you, the you that I know, they'd love you as much as I do."

I just have to keep telling myself that.

My friend Alisa

Compliments of Angelique Cook Photography

I have a beautiful friend named Alisa. Not only is she beautiful on the outside, her heart is absolutely pure. I met Alisa in 2007 after my Lyme diagnosis. I would go to get IV treatments and this beautiful girl sat near me. As we laid there in our own treatment chairs, we would talk when we weren't sleeping. I barely remember our conversations, but I do remember we talked about my Lyme Disease, her heavy metal poisoning and our mutual vein problems. I remember her talking about traveling, but with my Lyme Brain I couldn't remember why she traveled all the time. Alisa was there on the day I got my PICC line. And Alisa was the first person (other than my husband) to see my PICC as she was contemplating getting one. She saw my PICC less than 30 minutes after it was placed.

So I have been wanting to do a biography on one of my dearest Lyme friends since I started this blog. I contacted her recently asking if she would be interested and as all of you know, it's very difficult when you're in the depths of Lyme to form a complete thought. So while I know it's difficult for her to do my survey right now and while I don't have the information to do a true biography on my friend, I do want you to get to know Alisa and her soul.

Alisa currently lives in North Carolina not too far from me. She just recently got married and her husband is a dream come true for Alisa. I've seen her wedding pictures and to say that she looked absolutely radiant is an understatement. Alisa struggles with many aspects of Lyme. I don't even know where to begin and since we haven't actually seen each other in so long, I really don't know of even half of her difficulties. I do know that she has seizures. She does IV treatment at home through a port and also has a feeding tube. The difficulties of Lyme brings loneliness. Because you don't get Lyme until you get Lyme, people outside the Lyme world don't understand how complicated Lyme is for Alisa so she feels lonely. After you read this, you will hear her beautiful voice which is why it is so frustrating that Alisa now has to go to speech therapy because her muscles in her mouth have weakened so much.

When I reached out to her, she was worried that she wouldn't be able to answer the questions the way she wanted to. Her brain struggles constantly that she has moments where she doesn't even recognize her husband. She had two hours the other day where she could handle light noise and being able to read & comprehend, but that doesn't last long. So that's why I wanted you all to get to know my friend Alisa. She & her husband need your prayers.

The best way I know how to share with you my friend is to have you listen to her voice. This video is from 2008. And a year ago, I rediscovered why Alisa traveled so much when I discovered this video. Alisa is an incredible singer and talented song writer. Go to the bottom of those post to read the lyrics.




My note to my friend:

Alisa, I love you. I consider you to be one of my best friends. I thank God that He put me through my own Lyme journey because He allowed me to meet some absolutely fantastic people in this world which at the top of that list is you. It is my desire that God heal you completely and you absolutely deserve the best this world has to offer. This song gives me incredible goose bumps and reaches my soul. I think it is a wonderful anthem for Lyme Disease even though you may not have known you had Lyme when you wrote these heart touching lyrics. When you are able, I would love to do a true biography with the survey I sent. But for now, I hope this helps touch your heart as much as you've touched mine. May God bless and heal you.

Your friend,

Jennifer

Breathing by Alisa Turner

It is dying to come out
It is killing me within
Someone check if I’m still

Breathing
Just keep me breathing
Oh now what should I say
I wanna to keep it from the heart
Well someone check if I’m still

Breathing
Just keep me breathing
See this is why I sing it
It’s gonna keep me breathing

I should’ve told you from the start of things
That tonight I’m really suffering
And me I hope you’re still

Believing
Don’t stop believing
Cause if you stop believing
Than it will keep me singing

I do have thought of suicide
I know it’s brave of me to say (I know)
But am I brave enough

To Stay
Enough to stay
So this is why I’m singing
To keep me breathing

Waiting

I have been waiting since Wednesday to get the results of my blood work in the mail. As I understood over the phone, my hormone levels are completely normal. My Vitamin D has tanked. Those were the only two I asked about. I meant to ask about my NK Cells, but forgot after she gave me the Vitamin D number because I was so shocked it had dropped 36 points.

If I don't have the results in hand by Tuesday, I'll have to go by and find out what in the world. 35 minutes from my LLMD and usually takes 2 days max to get something in the mail. So I decided why not save a little gas and just let them mail it to me. I'd have time over the weekend to sort it all out. Yeah not so much.

My online friend Molly

So as most of you know in 2009, I was really focused on a second blog called Praying for Lymies. I haven't utilized it all this year and the other day I saw the original button for the blog on another person's fb account. It reminded me of the passion I put into the blog and made me want to reach out for more Lyme biographies and updating some old friends that I haven't talked to in a while. Imagine my shock when I talked to an old friend Molly and discovered her husband was battling cancer. I posted this on Praying for Lymies, but wanted to share it here too.

May 29th 2009, I featured Molly from Michigan. Molly is now 52 years old and I recently got in touch with her to find out how she has been doing. She began Rifing for Babeiosis. Molly thought she didn't have it, but her doctor felt that it couldn't hurt since it had been taking so long for her to recover. Rifing stirred up another monster and she herxed like crazy. She's been rifing for a year, but she's had some interruptions in getting truly aggressive. Molly is up to two Babs sessions per week. Molly's pain levels have improved as well as her overall health.


Last year, Molly lost two very important people in her life. It has really affected how her family feels. Then in early June, Molly's husband was diagnosed with stage IV Neuro Endocrine Cancer. This is a very aggressive cancer. Joe's Pet Scan showed that the cancer has metastasized to his entire body. This year has been very stressful and Molly's health as suffered.

Joe is responding very well to Chemotherapy and they haven't ruled out some alternative treatments. Molly says that while it may sound weird, she thinks he's going to be around for a while. They are praying for a miracle and aren't ruling anything out. Joe constantly displays a positive and friendly attitude which has kept Molly strong as well. Molly says, "He is an amazing man."

Please pray that Molly makes good decisions about her health so she can be well enough to care for her husband of 30 years. Please pray that if it is God's will that Joe be completely healed as well as his comfort during this horrendous journey.

Welcome to Living the Lyme Life

Welcome to everyone who has found their way to my blog. I started this journal in September of 2008. I had already been in Lyme treatment for 18 months. I wish I had begun it earlier. The name of my blog would have likely been Living a Symptom filled with no actual diagnosis Life. What a mouth full.

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. Though since my diagnosis in 2007, I've dabbled in mineral deficiency, progesterone defiency, heavy metal toxicity and other health issues. I had a PICC line inserted into my right arm in July of 2008. I battled with it every day until February 2009. 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 IV wasn't used to ABX therapies. It was used for vitamins, minerals and other supplemental therapies such as Chelation. I used an extremely experiemental IV protocol for about 9 months, but it is no longer available. I rarely talk about it because it's so controversial and it's no longer available. I'm angry about that however because I feel like that IV did more for me in 9 months than anything else I tried.

I try to live my life the best I can. Currently, I'm doing well. I use LDN Cream to keep my immune system functioning the best it can. Lyme ruled my life for a while, but I'm just a woman trying to live my life the best I can with the skills that I have and the love I receive. My husband and I got married in April 2000. He's my rock. Up until recently (when my brain actually started working), he went with me to almost every single doctor appointment. He supports me with his quirky sense of humor and selfless determination to get to the root of my health issues. Google was his best friend when I was having so many issues and we couldn't find answers in 2006. He found my LLMD and he helped me fill out all the paperwork to see him.

We have two dogs that we rescued a long time ago. One is a lab mix that we adopted from the SPCA when he was about 8 months old. We also rescued a Dachshund from a house. 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. Although I used to work full time in a preschool classroom, it became difficult to continue to do so. So for a while I taught 3 & 4 year olds how to read outside of the classroom in small groups. A lot of the children I have taught in the past are now in Academically Gifted programs. It makes me so proud to know that they took the basics I taught them and expanded into very gifted students. I just recently saw one of my students that I taught at 3 and 4 and she's now in 4th grade. Last year, I worked iwth another lady that help my same position. Because I am very loved in the classroom, I released all my students to her and began floating around in the preschool rooms. Though I am capable in younger classrooms as well, my passion is those preschool students.

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.

Where to get Magnesium Gel

In the comment section, I received a question about where to get the Magnesium Gel. I recommend asking your LLMD about this before just going out to buy it for yourself. You may not even need something like this. However, I got my Magnesium Gel from my LLMD's office. I have found it on Amazon although you can find it just by googling it.




Since I know you can't read it the official name is MagneDerm Transdermal Magesium Gel.

Magnesium Gel

So at my last LLMD appointment, we discussed Magnesium Deficiency. I started doing a little research on this possible deficiency of mine and discovered a number of things. MedlinePlus says there are three categories of deficiency: 1. Early. 2. Moderate. 3. Severe. They mention fatigue, insomnia, irritability and muscle twitching as a few of the early symptoms. In an Ezine Article, they mention PMS, headaches, and that lights may appear too bright.

Well, I tend to have trouble taking supplements and as with the LDN Cream, we're trying alternative therapies. So when he mentioned that there was possibly a Magnesium Gel, I jumped on it. Apparently it's supposed to really help. I'm not sure how well it will work, but today I put on my arm a little bit and massaged it in. Per the instructions on the bottle, I washed it off after 30 minutes.

Some people online have sworn by this saying that they've had rashes disappear they've had for a long time. So I chose to go ahead and use it on my arm. We'll see how it goes and if I start to feel better as time goes on. Either way, I didn't get sick to my stomach since I didn't have to put it into my stomach. If it helps this rashy appearance on my arm to boot, I'll be thrilled as punch.

Blood Draw McGraw

If you want to know about my My Diagnostic Codes for this particular Lab check out my previous post called Diagnostic Codes.

My day began Thursday night. I drank two extra bottles of water and went to sleep good & early to be well rested for Friday. I woke up bright & early and began my regiment on drinking water. I got in the car and left my A/C OFF. And in this sweltering topping 100's (yesterday in the sun, my best friend's thermometer read 115 .. though I doubt it was really above 104). Occasionally I would crank it up for a moment to keep me from melting away, but I was trying to keep my temp pretty warm so that my veins would cooperate.

I arrived at the lab expecting a line full of people. There was only one. It seemed to take a while, but honestly it probably wasn't as long as I felt (b.c I arrived at 9:15 and then left at 10:15). After the other client left, I handed the dreaded vampire my forms and cards (insurance, driver's license and credit card). As she was typing in the codes from the paper, I could hear her audibly sighing. Finally I said "What's wrong?"

She said, "These are some serious tests with difficult lab procedures."

It was then that I laid on her that, "My veins are difficult to get." We both took a breath and she was writing a lot of things down (SST*, Frozen; SST, Ambient; SST, Refrigerated; etc!). She's going over each test and writing down which test needed what. When all was said & done, she needed 10 vials. During this, I'm telling her my horror stories which included:

• The time that the lab used the wrong tube for my "Day 21" lab which caused me to have to go back on another Day 21 which caused me to miss about 28 days of meds b.c I needed them
• The time that the lab stuck me about 8 times before sending me home to come back the next day
• The time I fainted
• The "Latex" Tourniquet & Gloves Lady
• The "OH I can so get that" vein lady (which just so happened to be the same lady as the Latex tourniquet lady).

She looked at me with horror as I recounted several visits in the past. I sat down and she went through all 10 vials and the paper twice before grabbing a beautiful blue pair of gloves. We talked about my arms before she even put the tourniquet on. She tourney'd up the left arm and felt around. She tourney'd up the right arm and felt around. She asked where this infamous "vein" was and I pointed the general direction of its location. She couldn't believe that anyone would try that particular spot.

She then said she wanted to try my hands, but in general hands didn't respond well to 10 vials. That she would do her best. So she tourney'd up my left hand and began manipulating my hand to get some veins to pop. And pop they did. I felt as if this lady had struck gold! She grabbed a butterfly (the heaven's opened up and sang her praises when she did that!) needle and said "Are you ready?" Like I even had a choice! We both took a deep breath and she stuck it in. I felt it all the way down to my toes! I felt a joyous feeling inside b.c I knew that when I feel that it means that typically at least 5 vials will get blood filled.

I started taking deep breaths, which of course worried her. But then I told her that typically the blood flows better for me when I breathe in and out slowly throughout the entire procedure. Vial after Vial filled with glorious blood. She got to the last two and said even if she had to pull the needle out that she was confidant that she could get two purple tubes out of another vein. I continued to slowly breathe. The blood continued to flow. Next thing I know, she's pulling out the butterfly.

I was so thrilled that I filled out one of those comment cards. I believe the wording I used was "miraculous visit. 1 hand stick for 10 vials on what's typically torture and 10 sticks filling only one vial! Thank you Heather."

After I stopped bleeding (I'm really hoping this doesn't mean that my blood work will stink b.c sometimes when it doesn't stop bleeding immediately some of my work is wonky), I went out front to drink 1/2 a bottle of Gatorade before heading out.

Let's just say, I'm thankful to a woman that listened to my past concerns and did exactly what was needed to get a good draw. I'm also thankful to some hand veins that have apparently somewhat healed enough to get some blood! Praise God for Miracles. Now let's pray that my blood work comes back with the answers we need. Heather said she was going to be thinking about me all weekend. I asked her how many was the most vials she had ever filled (thinking it would be in teh 20's ... after all Dr. P's office does this all the time). She asked, "including yours?" ... I'm like yeah .. she said "yours."

No wonder she had an audible sigh! I used to call "S" .. One stick slick. I think Heather will be Blood Draw McGraw! Too bad I can't make sure she's there every time!





*SST is Serum-separating tubes. They use this for a lot of different labs. The tube at my office is generally a marbled colored top. There are many different color tops for different tubes based on what's inside. Some are Red, Purple and honestly I can't remember the others

Website on Vacutainers)

Diagnostic Codes

Earlier today I was looking at the Diagnostic Codes listed on my Lab work paper for tomorrow. I will be going in to get my "Grab & Jab" which will lead to the "hit and miss." Anyways, I saw these diagnostic codes and wondered what they were.

Thank goodness that Google is my friend

780.79 = Other Malaise & Fatigue.
625.4 = Premenstrual tension syndromes
280.0 = Iron deficiency anemia secondary to blood loss (chronic)
288.0 = Agranulocytosis

According to Medline Plus, "Agranulocytosis means a failure of the bone marrow to make enough white blood cells (neutrophils). Bone marrow is the soft tissue inside bones that helps form blood cells."

Medlineplus also says, "Agranulocytosis results in a person not having enough of a specific type of white blood cells, called neutrophils or granulocytes. A low neutrophil count (neutropenia) may also occur when white blood cells are destroyed faster than they can be produced."

People with this condition are more likely to get infections. So in order to insure that Lyme doesn't rear it's ugly head (since it IS a bacterial infection), we have to keep a check on my blood cells. I've had a problem with my cell counts in the past so my LLMD likes to keep a check on them. This is also something that the LDN should have helped.

Cross your fingers that the Grab & Jab goes well.

LDN Cream

At my most recent LLMD appointment, we discussed what we have been talking about since August of 2009. I wrote a post then (click here to go to that post) Explaining LDN. He started me off at 4.5mg, but I had some really lousy side effects at 4.5mg. Those side effects included a severe lack of sleep, profoundly disturbing dreams, severe headaches, excessive jaw pain and fatigue. When this didn't improve, he recommended that I start off at only 1mg and increase as I adjusted to it. All of 2010, I had difficultly getting past 1mg and I eventually stopped trying. In May of 2011, I decided that I would really try to get up to 3mg. Things went okay and I actually did get up to 3mg.

So when I went to my LLMD, I explained to him that I had done really well. He was rather impressed that I had pushed myself. Then he told me something that I wish I had known before now. LDN can be compounded into a CREAM! The cream comes in syringes. There are 3ml of cream in each syringe and 10 syringes come in a 30 day supply. For a typical Lyme patient, they would use 1ml of cream per night. Well with my sensitivity, we're going to start off with 1/2 ml of cream. This is about the equivalent of 2.25mg of LDN. If things go well this entire month, then I can slowly increase until I get to the full 1 ml of cream.


Here are 9 of the 10 syringes next to my cell phone (an appropriate Lime Green!) to show size.


I push the syringe so that 1/2 ml out onto my arm. The instructions say to rub it onto soft skin. The pharmacist recommended the soft side of the arm between the elbow and wrist. I have decided to alternate the arms, though I don't think it's necessarily required. I have used it for three nights so far. In addition to the LDN cream, we discussed my difficulty sleeping lately. So he sent me home with some Melatonin hoping that it would help me sleep.

On the first night, I had no problems sleeping. I slept the entire night without waking. I did have dreams, but they weren't enough to wake me. On the second night, I woke once. I woke up and was extremely thirsty and hot. So I had to get up for some water and to turn the air cooler. Once I was settled with those things, I was easily able to go back to sleep. I was exhausted when my alarm went off however. Last night, I slept like a rock. I fell asleep at 7:45pm and didn't wake until 5am when my alarm sounded.

I get my blood work done on Monday and I'm hoping that all this work I've done since May will show up.

Lyme Walk 2011 in NC

Read this Article in the paper regarding the walk I went to on Saturday morning. This article will give you the details about why the walk was being held in the little town of Albemarle North Carolina. Now onto my story.

Prior to my Lyme friend Whitney's benefit raffle, I was invited to this gathering a little over two hours from my home. I thought it would be fun to go, but wrestled with the thought of actually going. I always enjoy hanging out with fellow Lyme patients, but there are several reasons why I thought I wouldn't go. The thought process went something like this:

1. I'm going to spend over 4 1/2 hours in the car.

2. I don't think I'll know anyone there.

3. AND It's going to be OVER 100 DEGREES OUTSIDE!!!!

4. I could easily get sunburned or bit by another tick.

There were however three reasons why I thought that I should go.

1. I knew that I would know Wendy & Brenda from online and that I would have a great time with everyone once I arrived.

2. My ability to advise those that are just starting their Lyme journey or those that knew nothing about the disease.

3. I would be capable of capturing magnificent snapshots of moments.

So after convincing my husband that we should go (despite the HEAT that kept hot dogs warm long after they were cooked!), we went to the store and picked up bottles of Gatorade and water. We purchased three huge bags of ice. Yesterday morning we got up at 5am sharp and packed our car with the cooler full of ice with our drinks, sunscreen, bug spray and our awesome Olympus E-620 SLR camera with extra flash!

Well the drive there was pretty boring. However, I must say "YOU might be in the middle of nowhere IF you see a lady on the side of the road having a little mini yard sale on the hood of her car right near a horse & buggy caution sign." We were right smack dab in the middle of no where. We arrived around 8:20 and I generously applied both sunscreen & bug spray to my skin.

I took a walk over to all the Lyme Clad ladies & gentlemen and threw myself right smack dab in the conversation. Now I am telling you, Lyme has given me many problems. However, it also gave me a huge advantage. Five years ago, there is no way I would have walked into a place with several dozen strangers and felt comfortable enough just to be myself. No way, no how.

Shortly after arriving, I began snapping photos. I took almost four hours worth of photos. I took well over 300 photographs. I won't share them all, but to me these photos are priceless.

Lyme Disease Awareness Board: There were many brochures on Lyme to share with those that participated in the walk.


Tick Remover Tools provided by IgeneX.


Presents for the Lymies. Brenda & Wendy were kind enough to make up packages for those of us in attendance that had Lyme. So very sweet.


Holly presenting the Lyme Awareness shirts.


Ernie & Brenda talking about Lyme Disease.


Lyme Bracelet from May Day


ILADS bag.


Two Lymies sharing a moment.


Brenda counting funds raised.


My new Lyme friend & me.


So the biggest thing that happened was that I got to talk to a young lady I haven't connected with before online. She was the sweetest thing ever. I talked with her and her Dad at length. They got to take home the documentary Under Our Skin. The amazing thing is that I'm more than twice her age! In fact, I'm twice her age plus 3!

What an amazing day.

Lyme Walk 2011

My husband and I went to the Lyme Walk today. Took us about 2 hours and 15 minutes to get there. We stayed from about 8:20 to noon. We had a blast and I took a lot of photos. I'd love to share many, but this sums it up.



I will be sharing more in the future, but I wanted to say that we had a great turn out. They raised 500 dollars for ILADS. I met many North Carolina Lymies. All of us have a very similiar story.

Lyme Symptoms in the past

So there is this website that most Lymies know of called: canlyme.com. It lists about 75 symptoms of Lyme Disease. I thought I would share with all of you the symptoms that I have had starting in 1995 when I got my initial tick bite. Some of these didn't start until 2005 when I got a second known tick bite. Yes, this is a long post. So sorry, but this is a long illness. I'm sure there are things I've left out. Also, there are things that I haven't told very many people.

• Tick Bite: I saw the tick bite.
  

• Rash at the site of the bite. I don't know if there was a rash for the first tick bite, but other tick bites, there were rashes including the EM rash that is commonly recognized as the Lyme Rash.

• Rashes on other parts of your body. I had rashes (and sometimes still do) all over my body. Sometimes it was on my legs, arms, trunk, face.
  

• Raised Rash, disappearing and recurring. Yes my rashes would pop up and some of them would be raised. They would disappear as quickly as they came on.
  

• Rash, basically circular, oval and spreading out. I had this as well. These rashes were more after the 2005 tick bite.

• Headaches - mile or severe. My headaches were tremendous. They were so significant that my GP ordered an MRI to check for tumors.
  

• Seizures - about 2 weeks after my tick bite in 1995, I started having seizures. Some were shown on EEGs and some were not. The doctors suggested that they were psychosomatic. I never believed that for a moment. They completely ended a few weeks into Lyme treatment.

• Twitching of facial or other muscles. My legs and arms twitched all the time. Most weren't noticeable to people, but at the peak of my illness my husband could feel them if he were holding my hand.
  

• Tingling of nose, tip of tongue, cheek or facial flushing. For a while, I blushed easily. I also had tingling all over. Nose, tongue, cheek, legs, etc.
  

• Stiff or painful neck. I would wake and my neck would be so stiff that I couldn't turn my head. If I did turn my neck, it would be very painful. Most of the time, it would go away after about 2 hours of being awake. It made for a difficult drive b.c I leave for work about 40 minutes after I wake.
  

• Jaw Pain.
  

• Sore throat, Clearing throat a lot, phlegm, hoarseness, runny nose. I often times would wake with a sore throat and runny nose. It was not uncommon for me to get laryngitis. For no reason, I would wake up without being able to speak. I also would have what I called "clogged throat."
  

• Double or blurry vision. at the beginning of my treatment in 2007, I had extremely blurry vision. Because I do wear glasses, it freaked me out. I sought help and my eye doctor was a little bit Lyme literate. She told me that b.c Lyme affects muscles that my muscles were being affected by the bacteria. She thought that with treatment that the blurriness would improve. She was right.
  

• Increased Floaters. Oh My Word. There was one point where the floaters were so bad that I didn't want to be out in the sun at all b.c they were so distracting. Some looked just like the spiral bacteria too. I was very freaky. Again, they improved significantly with treatment.

• Pain in eyes, or swelling around eyes. I often would have swollen lids around my eyes. I'd wake up and they would be swollen. Sometimes it would happen in the middle of the day. It still happens. I attribute it to allergies, but who knows. It could actually be Lyme.

• Sensitivity to Light. For a while, it hurt to even be inside with the lights on. I would sometimes wear my sunglasses inside. I still have to have complete darkness to sleep. Otherwise I wouldn't get any sleep at all.

• Plugged Ears. Sometimes I have moments where I can't hear. It feels as if I have cotton in my ears.

• Buzzing or ringing in ears. There was a point where it was so bad that I wasn't sure if there wasn't something really buzzing in the room. I would have to ask others if they "heard that noise." Once I answered the telephone because I thought the phone was ringing. It was my ears.
  

• Oversensitivity to noise. I couldn't go in a crowded room b.c it was so loud and it caused the headaches to increase 10 fold.

• Diarrhea. I would get cases of having to wake up in the middle of the night b.c this was so bad. It generally only happened between 1am to 4am.

• Bladder: UTI's were often.

• Upset stomach. I would wake up in the middle of the night and run to the bathroom. It would be coming out of both ends. There would be no rhyme or reason for it.

• Bone, Joint Pain, Swelling. My bones and joints ached all the time. My knees, ankles and knuckles would swell.

• Stiffness of joints, back, neck. It's self explanatory.

• Muscle pain or cramps. Almost every single muscle ached.

• Once I started treatment, I had serious trouble catching my breath. It hurt to take a deep breath and I didn't feel like I was getting enough oxygen. It wasn't the case, but it felt that way.

• Chest pain or Rib soreness. My ribs hurt constantly. It sometimes felt as if I had broken them.

• Night Sweats, unexplained chills. The nights I would wake up running to the bathroom, I would be in a cold sweat. I'd be freezing cold and burning up all at the same time. No Fever, but my clothes would be covered with sweat.

• Heart: Sometimes my heart would race or feel like it would skip a beat or two.
  

• Tremors, unexplained shaking: My hands would shake sometimes so hard that I couldn't hold a cup a water without spilling. This was the hardest symptom to "hide."

• Fatigue, Weakness. I felt completely exhausted. Sometimes so bad that I would fall asleep at stop lights.

• Numbness, tingling, pinpricks in body. Sometimes it was so bad that I couldn't feel something that was vibrating. You know those bouncy seats that vibrate? Well I couldn't tell if it vibrating by touching it. I had to listen for the noise. Imagine my shock when I felt it for the first time with my hand. I often felt as if my body was asleep. You know that annoying sensation when you sit in one place too long. Yeah ... I felt like that a lot.

• Poor Balance, Dizziness, Difficulty walking. I often fell. It was embarrassing. Sometimes my dizziness was so bad that I crawled.

• Increased motion sickness. Well I've had this since I was a kid, so I'm not sure whether it was increased or not, but motion sickness during treatment was horrible.
  

• Lightheadedness. I often felt faint when I stood up.
  

• Mood swings: I went through a phase where my mood would dip with the blink of an eye. I was frustrated a lot of the time.

• Unusual depression. Not a pretty topic, but I spent a lot of years depressed. Because of this, I was on antidepressants for a few years. Of course, my doctor thought that my depression was causing my symptoms. Turns out my symptoms were causing my depression. :O

• Disorientation, I got lost all the time. I got lost going home from work, a place I worked at for a number of years.

• Over-emotional reactions. I would cry at the drop of a hat. No reason. It was insane

• Too much sleep. there was a time in which I could sleep 12 to 15 hours, wake for an hour or two and then go back to sleep easily for another 8 hours.

• Difficult falling asleep: in the same breath, some nights were very difficult to fall asleep.

• Narcolepsy. While never officially diagnosed, I did fall asleep quite easily - not always in the bed. In fact, once I fell asleep while talking to the nurse at the front desk of a medical office.

• Panic attacks. Back in 2001, I had serious panic attacks. So much so that I took medication for them. Because I was terrified of addiction, I rarely took them ... but dealt with the anxiety through breathing techniques.

• Memory Loss: Sometimes I would forget days at a time. I think I still have lost memory from the past. Once a friend came to visit me from Virginia. A few weeks later, I mentioned I hadn't seen him in a year. I honestly didn't remember his entire visit. I still don't.

• Confusion: My words get jumbled sometimes.

• Difficulty reading: This was the most troubling problem. I loved to read. I mean, I used to get in trouble in elementary school for reading! So when I brought home a book from the library and struggled to read a page, I cried.

• Going to the wrong place. I once drove to my old place of employment. FOUR YEARS after I quit. I didn't realize I was in the wrong place until I got into the class and the kids didn't know who I was.

• Slow, Stammering speech. Sometimes I would get told "just spit it out already." What those people didn't know was that I was speaking as fast as my brain would let me. It was so frustrating and I couldn't explain that Lyme was causing my brain/speech to be so slow.

• Forgetting how to perform simple tasks. I once forgot how to use the washing machine.

• Phantom smells. Sometimes I would smell foods that hadn't been cooked. Most of the time I smelled Popcorn.

• Unexplained weight loss. I lost quite a bit of weight. I think I got down in the 70's. No reason for it. It took a while for me to get back into the 90's. Now I'm in the triple digits. No one jumped bigger than my doctor when we tipped the scales. :)

• Swollen lymph nodes. Occasionally my lymph nodes in my neck would swell.

• Unexplained "fever" My temp stayed way too low. 96.8 would have been high for me.

• Continual infections: I almost always had some sort of sinus infection.

• Symptoms seem to change, come and go. One day I'd have pain, the next day it would be cognitive problems. I'd make a doctor's appointment for one problem and when I'd arrive that one would be gone and another one would be in its place.

• Pain migrates: Sometimes my right knee would hurt and other times my left elbow. It moved around quite often.

• Flu like symptoms. I don't remember having the "flu" after my 95 tickbite, but I did get it after my 2005 tickbite.

• Allergies Chemical sensitivities, I can not tolerate "smells" of any kind. Makes me sick to my stomach.

Lyme Walk in North Carolin

On this coming Saturday (July 23, 2011), there will be a walk in Albemarle North Carolina. A couple of Lyme warriors have organized this walk. It will be held at ...

City Lake Park

815 concord rd

Albemarle, North Carolina 28001

All funds raised will be going to ILADS. There will be an awareness walk and free hot...dogs, drinks, and cupcakes. There will be a cornhole tournament ($20 per team, 2 game guarantee). The park is rented from 8 to 12. Raffle tickets are $2.

Here is the facebook event page.

https://www.facebook.com/home.php#!/event.php?eid=214406478603459

Living the REMISSION Lyme Life

Yesterday was my wonderful Lyme appointment. I say wonderful because one thing didn't happen. There was no Grab & Jab. That happens July 29th. I say wonderful because of something I read after I left his office.

So at each visit, I go into the waiting room. I sign a piece of paper that says I'm there, what time I arrive and whether I want treatment or not. It's just a cover all our behinds kind of thing. When I'm there for a follow up, I have to fill out another piece of paper that asks what specific improvements or problems I've had since my last visit. Also have to say what specific issues I want addressed and any medications to be listed. I'm taken back for my temp, weight, blood pressure (sitting and standing) and pulse Ox. These are typically all good. Though I did have problems with my temp for a while (being way too low .. and occasionally too high) and my weight was significantly too low, but we've worked out both of those issues. I'm brought back to the waiting room while I read a new set of policies just put in effect and wait for my hero to peer his head through the door.

I was sure to get a smile on his face because while he'd never admit it out loud, I know I'm one of his favorite people. After all, he took me to congress and our picture was in some journal together (though I did never see it). We sat together to see our first viewing of Under Our Skin. So a warm smile from him when he thinks about how far I've come in four plus years is very much expected.

He opens the door and peers his head. Before he could even get my name out, I've bolted out of my seat. We walk back to his most comfortable office where I proceed to tell him that I forgot my cheerleading outfit (which doesn't fit anymore ... :( but symbolic b.c I am his biggest cheer leader) and he kindly reminds me that I used to be the person that always came in dressed crazily. I knew he meant that he could always count on me for a laugh.

We sat down and I haven't been in since December. So he wanted to recount how I've been. I tell him first how well things have gone. I've only been on antibiotics once for Bronchitis since our last visit and those went well. Then, I had to mention the symptoms. I mean I was there to tell him about my symptoms. Well I chart ALL of my symptoms in this calender on google. The problem was that my printer wasn't working and my husband wasn't home to fix it. So I had to rely on the good ole memory banks. That's hard to do sometimes, but I knew the few problems I wanted to discuss.

I told him about the few headaches I've had (which I'm sporting one right now actually). I told him about the problem sleeping sometimes where I wake up from a vivid dream and struggle getting back to sleep. And then there are some nights where I sleep very little. Now those of you that really know me know that in days past I could sleep 12 hours without waking once and at the end of the 12 hours honestly I could wake up about an hour and go back to sleep no problems. I talked about my staring into space and not really being there and spacing out moments. There was one other too private thing (which really isn't that private, but I just don't feel like discussing it on the blog) that I discussed with him.

He dug through my chart and reminded me of some serious symptoms I had in the past. We smiled b.c I had gotten through them. We discussed LDN at length. Discussing that it could possibly be the cause of some of my symptoms, but more likely than not it was something else causing the problem. We discussed how in the past my Progesterone levels were low and this could cause every single one of my problems. So on the 29th, I'll go and have those checked out. We discussed some mineral deficiencies. I've had problems in the past (and probably still have problems). These medicines make me feel so extremely nauseated. So I tend not to take them. So we're working on solutions for that.

We discussed our mutual fear of Lyme creeping back or getting a new infection over every little small symptom. Though I told him I try not to let that anxiety rule my life as it did two years ago. I told him I was in the paper. Oh did you not know? Google News of Orange: Or better yet. It won't be up long b.c they change it weekly, but a picture of Whitney & I were on the front page of News of Orange.

Here is the photo:




http://www.aconews.com/content/current/noc/front/front.pdf

Anyways, in the article you will read what it says under it:

"Both women suffer from Lyme disease, though Allton has already completed her treatment and is almost entirely in remission while Corn is just starting her antibiotic series. Before she could start, Corn had to build up her strength by taking supplements.
Erin Wiltgen / News of Orange"

I wanted to share this with you because ... it's official.

All indications are that Lyme remains in remission potentially even eradicated (though concerns remain that it could return or I could get a new infection). Dr. P said all of this based on my clinical symptoms just as he diagnosed me clinically. However, once my blood work is done and comes back (which should be back by the middle of August) we will know for certain that my symptoms remaining are hormonal in nature and not from Lyme.

Can you see me jumping for joy? I'm THRILLED.

Be Our Guest

So last week, my boss called me to the office. She told me that "they" had been thinking about me and a "fun" project she wanted me to do. When I asked who "they" were, it was my boss and another school director. Well sometimes these "fun" projects aren't exactly fun. Sometimes they are very boring. I waited for her to spit it out.

She asked for me to go over to another school to be Snow White. Well, that fell through for the week, but then another teacher said since I was already being Snow White that I should be Belle at our school. Well, that happened yesterday. I don't do anything 1/2. So my coworker brought her former boss's costume. I slipped into an empty classroom and applied make-up. Though that did have to be done 1/2 b.c I threw away all of my foundation a few months ago.

I just don't wear make-up. I feel itchy and uncomfortable so I just don't use it at all. Since this foundation was about 10 years old, I simply tossed it. I didn't however toss my powder, eye shadows or lipsticks so I went off to work with my tools in a shoe box (should have packed my caboodle, that would have been a blast from a past!). I put on the powder, a ton of eyeshadow, lipstick and mascara and went off to find someone that could fix my hair.

I can do a lot of things, but I haven't mastered a "pretty" up-do. I have mastered the simple bun and pony tail, but pretty Belle do ... well my hair has always been a mystery to me and yesterday my hair was particularly grumpy. So, I called for back-up. Then the back-up called for back-up. I wish I had pictures because wowzer it looked awesome (especially for a 5 minute fix with no bobby pins or hairspray).

I slipped into the bathroom where there was a whole debacle. I felt kind of like it was my wedding day EXCEPT I failed to remember that I would have to pull a shirt over my hair and make-up. So a friend helped me get undressed and redressed. We pinned where the dress needed to be pin. Put on a tiara and special shoes and voila. Ms. Jennifer turned into Princess Belle.

Wow. It's all I can say. Simply Beautiful.

My friend - Whitney

Whitney & I have a funny (in an irony small world) story to tell.

So in March 2011, I received a request on facebook. I set up a VERY small group a few years ago for my friends in NC and SC that have Lyme. When we started, there were maybe 5 of us. Now it's grown to 37 of us. I personally now have met 10 of them including Whitney. So in March I received a "I want to join your group" request. Whenever I get one of these requests, I pretty much send back some questions to the person. It goes something like this:

Hi, My name is Jennifer and I'm the cofounder of (insert group name here). In order to process your request, I need some information from you.

1. Do you have Lyme?
2. Where do you live?
3. How did you hear about the group?


She replies back that she lives in (----insert city name here---- which is about an hour and 10 minutes from me actually). That she's not sure that she has Lyme, but is certain she does. She goes on to tell me a little bit about her symptoms and while usually I don't add people that aren't certain they have Lyme, I figured what the harm. Plus on her friend's list we had a friend in common. And it was a real life friend. So I partially wondered if my friend had told her about my story and was also convinced it was Lyme. In hindsight, they don't know each other. My friend probably thinks that Whitney is another Whitney, but that's another story for another day.

So anyways, Whitney joins my group and we chat for a while. I highly recommend my doctor and to my surprise she starts to go to him. I often will refer people to my Lyme doctor, but honestly 9 out of 10 people start somewhere else first and then come back to me 6 to 10 months later asking for the name of my doctor again.

Well when I first started seeing him, I was completely overwhelmed. All the medications and supplements was enough to drive anyone crazy, much less someone consumed with neuroborreliosis (or with the 'chetes' as we like to call them). So I took a morning and went over to help her organize a chart for her medicine. We became fast friends.

So yesterday, I went to her raffle benefit. OH My WORD. We laughed and laughed until we could laugh no more. We shared our laughter with three other Lymies. Two were from our small group. What a blessing. I didn't win the TV, but I did win award winning looks like this:



Unfortunately, my camera was dying and I didn't get a photo on my camera of Whitney & me.
Hopefully the photo that the reporter took will be much more flattering of the both of us. Yes, there was a reporter. Now most of the time people say "reporter" and I get so nervous that I revert back to introverted Jennifer. Well I met Erin and just absolutely felt like she was friend I hadn't met yet. She was completely awesome and has done two amazing stories on Whitney. I think there will be a third story and she asked for the correct spelling of my name. So I'll probably be in the paper coming up soon of me & my newest best Lyme friend.

Ps. The another story for another day can be shortened for today:

My mother works with a lady that has the same name as Whitney's mother who also has a daughter named Whitney. They live a few counties apart. So my friend Whitney gets a lot of the other Whitney's friend requests. So more than likely, my friend *T* thought she was the other Whitney.

Pps: want to read the stories?

First Lyme article on Whitney: http://www.aconews.com/articles/2011/05/19/noc/news/news13.txt

Second Lyme article on Whitney: http://www.aconews.com/articles/2011/07/06/noc/news/news7.txt

Raffle for my friend

In a bit, I'll be headed out for a friend. A semi-new friend that seems to have been in my life forever. But I just met her this year. She is a Lyme friend. I seem to collect those easily. We share the same doctor. So this afternoon in a bit, I'll be headed out for a friend.

She's having a raffle and an overall good time with family & friends (and who knows maybe even some strangers) to raise money for treatments.

It's been a crazy day already and as soon as I get home, I'll probably do a lot of resting b.c starting Monday my life will be a little bit crazy for a couple of weeks. LOTS of things to do. One is my Lyme appointment a week from today.

Well I better go change into something green for a wonderful event for a wonderful friend.

If you're reading this Whitney, I love ya girl. :}

The Grab & Jab

So whenever I go to get blood work, I typically get the "grab & jab." The lady (typically it IS a lady) slaps a latex band (regardless of me saying ... "LATEX ALLERGY") around my arm. As my arm begins to itch and turn red, she grabs my arm and jabs. This always turns into a hit & miss, where they hit the vein, but then the vein explodes.

Grab & Jab
Hit & Miss

For once I'd love to get a "listen & feel." They listen to my knowlege of my own body and then feel for a proper vein (and listen again when I say that vein will blow).

My favorite lady has left the practice. I haven't gone back since. Though now I am having to go back and I will have to get blood done at some point. I'm scared of the Grab & Jab and the Hit & Miss.

Fireworks

So when I was little I loved to watch them. Hear them, not so much. Fireworks.

We live out in the country. And by country I mean ... we live in a subdivision of country people that love to shoot off fireworks (or guns whatever) for 4th of July (or 3rd .. or 5th or all three).

So on the 3rd and 4th, I got interrupted sleep because of these irritating noise sleep suckers.

Tonight, it's a little more God made.

I'm thankful for the rain. Really I am, but the thunder I've had enough of. It's been two hours of tossing & turning. Two hours of flickering lights (imagine my scare when I "woke" up to see my clock at 9:42 ... when my lights had been turned off).

I'm hot, tired and cranky. Throw in a little PMS and I hate to see what tomorrow is going to bring.

I just want some sleep.

Highs and Lows

This week has been full of them.

Highs: I'm at my all time high of LDN! 3mg.
Lows: I have had a few LDN headaches this week. :( First time since starting in May that I've had an LDN headache.

Highs: Pre-K graduation finally happened after 2 months of planning and preparation
Lows: Vomiting, Crying and Boogers for the children. BUT overall it went fine. Plus, I woke up with sore throat this morning so I think I probably caught something from all those people that were at the graduation. Yes I catch things that fast.

Highs: Got a hand held vacuum for the couch.
Lows: It didn't work as well as I had hoped because the suction is so great that the material from the couch goes into it, but it is somewhat easier than using 1,000 lint brush stickies. It also showed me just how dirty my carpet was. I'll be working on that little project for a long long time. I'm hoping to get just the living room done this week. :/ I use my Dyson (I mean .. the thing is great, but we weren't as stoked about it as we thought we would be) to vacuum the carpet. Then I get on my hands and knees and use the hand held one. Then I use the Dyson again and get out MORE stuff. I've been over this one area of carpet probably 10 times since Thursday and there is STILL stuff coming up into both machines! It is finally getting better.

Highs: I get to see one of my best former work friends this week and work at her center.
Lows: Means I'll be working with new germs -aka teachers & children which means I'll probably really get sick- which means I'll probably be sick over the 4th of July weekend.

Highs .... MY DAD IS HEART HEALTHY! He had several tests last week and got the results that his heart was healthy. You have no idea how much weight was lifted off my shoulders.

LDN Update

I've been on 3mg all week! Okay Okay that's a bit of an exaggeration. I skipped one night b.c I was so exhausted from not sleeping that great that I just decided to skip it. BUT, other than that .... 3mg of LDN. Dr. P is going to be so excited for me. Now we just need to pray that my numbers are doing what they are supposed to be doing.

:)

So you think you can (blog about it)

Whooooooooooooooooooo. So You Think You Can Dance is back and SO IS MARY MURPHY!!!!!!!! WHOOOOOOOOOOOOOOOO WHOOOOOOOOOOOOOOOOOOOO!

All 20 dancers are absolutely remarkable! I think that any one of these dancers would have given previous season winners a run for their money. However, I already have a few favorites. On the very first show I thought that Marko was a shoe in for the Top 20. Then after watching Melanie's audition, I thought to myself about the possible pairing of the two of them. Well my dear friends, looks like I got my wish! :o)

You see sometimes two remarkable dancers get together with a tremendous choreography and tremendous dancers and it turns out to be "pffffffffffffft" because there is no connection between the two dancers. Well, Melanie plus Marko plus Travis Wall = one fabulous piece. Wow. It was superb. I can not wait to see the next piece they dance together. Hopefully it doesn't disappoint.

We got a shocker at the beginning of the show letting us know that Mitchell wouldn't be performing because he had injured himself. Well as soon as I found out the piece was a Sonya choregraphed piece, I was thrilled for Caitlynn because I was certain she would either be dancing with Mark or Robert Roldan. They are up there with two of my favorite dancers. Well the show didn't disappoint. Caitlynn plus Robert plus Sonya? WOW! It was really hard to watch Caitlynn though because my eyes were staring at Robert!

Here are my lists!

1. Melanie 2. Caitlynn 3. Miranda 4. Missy 5. Ryan
6. Ivetta 7. Jordan 8. Sasha 9. Clarice 10. Ashley


I personally think Robert Roldan has gotten even BETTER since his season. Wow. He might would have won this season. :} Though he would have a fight with Marko. So with that said, here is my list of guys.

1. Marko

were there any other guys? Oh wait yes there were.
2. Nick 3. Jess 4. Tadd 5. Wadi 6. Robert (the *twitchy whoo man Urkel*)
7. Ricky 8. Alexander 9. Chris 10. Mitchell (just b.c he didn't dance)

Couples with commentary:

1. Melanie & Marko: loved the dance with Travis Wall. To paraphrase Mary, they had me at hello. Wow. I had chill bumps with this statuesque piece.

2. Caitlynn with Robert (in place of Mitchell). Wow did I get lucky to see Robert Roldan dance again. I truly hope he's an All Star. Would have also loved to have seen Mark dance this piece too, but wow. I wonder if in the end if we'll get to see Caitlynn dance this with Mitchell. I'm not sure if we would have had the fantastic results though. Who knows. I think Robert gave Caitlynn a leg up in the competition by getting to dance with him so early. ;) Can you tell I'm a Robert fan? And it's not just because he shares the same name as my husband. :)


3. Miranda and Robert. I was sitting on the couch dancing with them. They are so much fun. I personally love Robert's whoo personality. I think we'd be friends. and for the record if I were on the show, I'd be the "OH?" dancer. I have several different "oh's." I use it all the time. If you've never noticed before in life, you'll notice it now.

4. Missy & Wadi (Sean Cheeseman): How talented is that Wadi? Wow. I can't believe he could pick up the choreography and perform so well WITH A PARTNER for the first time! I think that they'll be in my favorites quickly. I hope Missy can show her softer side. It's awesome to be such a strong dancer, but my favorites are versatile. So I'm hoping to see it next show. For the record, I can't wait to see them dance a Sonya routine! :) Though that just contradicts everything I just said about being softer. ;)

5. Ivetta & Nick (Jason): It was obvious that Ivetta would do so well with the Quick Step, but I honestly can't believe Nick did so well at the kiss of death. wow Nick.


6. Sasha & Alexander (Travis): I liked them but it wasn't memorable. I couldn't even remember it at first and had to watch it again.



*** for some reason these four numbers didn't work for me. It had more to do with the choregraphy than it did the actual dancers b.c they did well with what they had to do and I love Jess, Ryan, Jordan, Tadd and Chris.

7. Clarice & Jess (Tyce --- for the record, if Jess hadn't been in this piece it would be number 10, not number 7)
8. Ryan & Ricky (Chris Scott)
9. Jordan & Tadd (Sean)
10. Ashley & Chris (Chris)


Can't wait to see the next episode. I don't know how the judges are going to kick off four people.

Swimming

So when I was a child, I really didn't enjoy swimming to start. Then there came a time where I just wanted to be at the pool all the time. Then, I just stopped. I didn't want to be out in the sun. I didn't want to be in the pool with a whole bunch of germ infested people. So typically, I honestly only going "swimming" about once (maybe twice) a season.

Well, I have already been three times this season. The crazy part is that instead of just standing around chatting with whomever I'm with, I've actually been SWIMMING! So my neighbor has a pool and we pretty much have a standing invitation to go over whenever we want, but we rarely take her up on it. A couple of weekends ago, they were going out of town for the day and told us we could come over and "swim" (it's not really big enough to really go swimming). That particular day I wasn't feeling well and only wound up there for 20 minutes, but the water did feel good.

My best friend lives in an apartment complex and they have a pool. A lot of pools now a days don't much go above 5 feet, but this one reaches depths of 9 feet. I have been twice this season and yesterday ... I actually SWAM. I didn't stay by the edge of the pool. I SWAM. Now let me tell you this, it's been years (probably decades) since I've swam as hard as I swam yesterday. My body is telling on me today, but boy did I have fun.

LDN Update:

It's been 5 weeks. I started at 2.75mg last night. Slept so so.

4th week of LDN (plus ...)

I started LDN on May 6th. So it's been almost one month since I restarted this medication. Now, the last time, I was able to get to only 1.5mg and had to stop because the headaches were so severe that I just couldn't get through the day.

Friday the 27th: I started 2.25mg. On Saturday I had the staring problem and a couple of bumps where the picc line was, but overall a good day. I repeated the 2.25 each night.

Sunday: I was fatigued all day because I didn't sleep well Saturday night. Other than the fatigue and the picc line bumps (I had a whopping 6 of them!), I had an overall good day.

Monday: Sunday night it took me a while to get to sleep, but once I was asleep I slept well. I had a bout of nausea and fatigue in the morning, but the afternoon was much better.

Tuesday: I slept really poorly Monday night so it left me extremely exhausted and feeling ugh first thing Tuesday morning, but I did have an overall good day until it was bedtime when I felt "ugh" again.

Wednesday: Slept okay Tuesday night, but was fatigued all day Wednesday.

Thursday: Wednesday night I had constant dreams. I woke up Thursday morning with very swollen fingers. Had an overall good day.

Friday: Slept well Thursday night and had an overall good day.

So my biggest four symptoms were fatigue, sleep difficulties, feeling ugh and the bumps. Neither were enough to keep me from increasing. Last night I began 2.5mg!

Plus:

I got a new bathing suit last week. I have to admit (like most women I know) I don't like shopping for bathing suits. In fact, I detest it. In fact, I don't really like clothes shopping period. HOWEVER, my new suit is way cute! I tried to find it online, but I couldn't so you'll just have to trust me. It's cute. :)

Finally ... a note on procrastination

Procrastination ---


Finally doing something in July that should have been done in February. That my dear blog readers is .. Procrastination at its finest!

Today I did two things I have been taking my sweet time doing.

First, I made my follow up appointment for my LLMD.
Second, I called in a refill for my LDN.

I'm hoping that by then, I'll be up to 3mg! My LLMD will be jumping through the roof if I can do this. I had no idea it could be done and now .. I'm so close! 2.25 ... that's only .75mg away! If I go the way I've been going, I'll be there in 2.5 weeks!

See what procrastinating got me? I couldn't have done this 6 months ago. :)

3rd week of LDN ... Plus ...

I stared 2mg of LDN on last Friday night. Friday night I slept wonderfully. I was completely shocked, but I did wake up with swollen fingers. However I had a pretty good day symptom wise.

I also slept well Saturday night, but I did have some serious allergy problems so I was forced to take a Claritin (my eyes were red & itchy). I also had some serious malaise and took an afternoon nap (not because I wanted to but because I had to).

Sunday night was a okay, but I did have several dreams that disrupted my sleep. So that caused me to be fatigued in the morning. I also had a small headache in the morning on Monday, but overall had a pretty good day. I was feeling like I was on a roll. Even with the severe malaise on Sunday night, I was doing pretty good on the 2mg LDN!

Monday night was a completely different story. I slept very poorly. I woke up every hour with nightmares and Tuesday I had body aches, picc line bumps (remember those pesky things that I really haven't had in months ....????), serious fatigue and what I call electric headaches. The pain shot right from the back of my brain up to the front of the brain. It would happen when I moved suddenly. It was an absolutely horrible day. I pushed through the pain and took another 2mg on Tuesday night.

I had some difficulty sleeping, but did have an okay day on Wednesday with only slight fatigue so another round of 2mg was in order. I slept better Wednesday night and had a great day on Thursday. In fact, I noted not a single symptom on Thursday at all! I slept great on Thursday night and my Friday morning was great. Friday evening I wound up with 6 bumps where the picc line used to be and a little bit of fatigue, but I felt comfortable enough to bump my LDN to 2.25mg!

I slept perfectly on Friday night. I went to bed and slept almost 12 straight hours without waking! I don't really like to sleep *that* long, but it was nice not waking up with dreams/nightmares. I felt really refreshed yesterday so I took my best friend up on his offer to go swimming. I swam (aka stood in the water and sometimes treaded in the deep end ... and occasionally actually swam) for almost two hours. I had very few symptoms on Saturday after the .25 increase. The only thing that was notably obvious was my "staring" symptom.

This is something that I really haven't talked about, but it's a problem I've had for quite some time. I honestly never really noticed it until about 8 years ago when someone commented that I needed to stop staring "at that lady." Well the thing was .. I wasn't staring at a lady ... I was just staring and it just happened to be in the direction of this lady in the restaurant. It was then that I realized I did it a lot and had done it a lot in the past.

Well in the last few years, the "staring" episodes have decreased until ... yesterday. I'm not sure if it was because (insert joke here) my brain was infected with chlorine (snorting very loudly ) or if it was because I was tired ... or something else, but I could not stop staring. My eyes would scan the room and then stop .... sometimes it was at a person, or an item or nothing at all. It was crazy! Fortunately my friend knows this happens so he was able to get me back on track most of the time before I looked like a crazy person. Anyways, there ya go. I have a problem with staring so if you & I ever hang out .. and I start to stare ... you know it's not my personal preference to stare .. at you or whatever it is I'm spacing out at .. it's just part of my Lyme symptoms sneaking out on me.


Plus:

Lightning Strike is still wreaking havoc. Still our phone is having issues. Still they haven't buried our permanent line. However ....

Our dishwasher is a dream! It's so very quiet. I hate that our old one was killed by lightning, but it was a blessing in disguise.

P.S. plan is to take 2.25mg the rest of the week until Friday and then increase to 2.5mg. AND I guess I'll have to make that follow-up now. The doctor's office called and left a message reminding me to come in for a follow up. At least I'll have something wonderful to tell him! (that I've been able to increase the 1mg of LDN to 2.25mg! and I'm really hoping to have it up to 3mg by the middle of June!)

P.P.S It is one of the blessings of old friends that you can afford to be stupid with them. ~Ralph Waldo Emerson

2nd week of LDN Plus ...

So this week was my 2nd week of LDN. Plus we discovered that our dishwasher was fried by the lightning too. So we went dishwasher shopping yesterday and today. We found one we really liked at Lowe's, but we debating on it because it was so "expensive." So we went to Home Depot and shopped at Sears online. It was there that we discovered the same dishwasher we wanted at Lowe's for $234 cheaper! Wow. So we went up to Sears to feel it out in person and it was 134 more dollars in the store than online. We bought it online and are having it shipped for free to the store. We'll pick it up one day next week.

Now onto the LDN Update:

On Saturday the 14th, I had a terrible day. I was exhausted all day. I had a headache that lasted all day and Tylenol didn't touch it. To top it off, that was the morning that the lightning struck our property. Because the symptoms were so severe, I decided to only take a 1.25mg Saturday night.

On Sunday the 15th, I was less fatigued, but I was still pretty tired. However I did sleep all night from Saturday to Sunday. Since my other symptoms were pretty void, I decided to take 1.5mg. I went to bed really late because of Survivor Finale.

On Monday, I was what I like to call "Zombie tired." I had an aura all day and felt as if a seizure could come on, but one never came to pass. (thank God). I felt fevered all day and pure exhausted, but I knew that there were a couple of reasons to explain this other than the 1.5mg of LDN so I took another 1.5mg dose.

Tuesday: From Monday into Tuesday, I had very vivid dreams from 2 to 5. I was also very cold all day Tuesday. However, I felt so great other than that that I decided to go ahead and take A WHOPPING 1.75MG! Woo hoo.

Wednesday: I had another bad day. I was very fatigued. I woke up often Tuesday into Wednesday and this was a huge impact on my stamina. So I only took 1.5mg that night.

Thursday: I slept really well Wednesday into Thursday and my headache was better. I had an overall great day so I took 1.75mg of LDN.

Friday: I've had a pretty good day though I did wake with very swollen fingers (my rings wouldn't fit on) and a small headache. I took some Tylenol and it took care of it. I only needed 1/2 my normal dose too. So that's good. I slept well Thursday night only waking once and that really didn't count because it was at 5am (my normal wake up time for week days). I took today off work because my Mother in law had surgery. She's back at home so the surgery went well. My plan ... in a few minutes ... is to see how I feel tomorrow after taking TWO MG of LDN tonight! Since I don't have to work and it doesn't really matter how badly I feel, I thought I'd take a risk!

So that's how things are going so far this go around. Here is hoping I don't have vivid nightmares or a headache tomorrow.


Update: I slept mostly through the night ONLY woke up ONCE! I remember having some dreams, but don't remember what they were about so that's actually completely awesome! AND my head feels pretty good this morning. I have some swollen hands and feet, but hey .. I'll take that!

Boom Boom Pow

Not the song, but the lightning and thunderstorm last night was Boom Boom Pow.

It was a bit crazy over here. I didn't sleep well through it, but once I heard a little pop (okay a loud pop) and hail, I was outta bed! I woke to find that one outlet in the kitchen was kapoot and that a breaker was probably fried (b.c there was no electricity in the computer or other bedroom) and that our phone line was dead. Nothing appeared to be a direct hit to the house, but rather a hit to something else that slowly leaked to the house.

I went back to bed and struggled to sleep. When I did get out of bed, found out that the telephone cover was blown off our house so that our phone line wasn't going to get fixed until the phone company comes down (and we're still waiting) to fix it. More than likely will be a temporary fix first and then a permanent one. My husband fixed the breaker and the electrical outlet. Our wireless router is fried along with my beloved electric blanket (well the controller).

Crazy. In any case, we are all okay. I'm sure we'll find other things that have been struck. There is a huge hole at the base of one of our Bradford Pear trees. Add to that: we've found that our doorbell is also broken.



On other "electric" news. Scotty McCreery is back in town! If I were a country fan, it would be a huge deal. But he's taken over the television today! I wish the kid luck, but I'll be honest ... I haven't watched this season at all and country music makes me cringe.

One week of LDN

I started LDN again one week ago tonight. I took 1mg dose and went to bed. I slept all night and barely even budged that night. It was a good start. The next morning, I felt very warm and had a small headache, but it wasn't enough to keep me from taking another dose Saturday. Sunday morning I was very warm and my hands were swollen a bit. That afternoon I felt a bit off kilter. I was a bit dizzy and off balance, but nothing to keep me from taking another dose.

In fact, I decided to up my dose to 1.5mg. Within 15 minutes, my heart rate increased. I did go to sleep, but my sleep was disrupted with dreams. Monday I woke up exhausted and stayed fatigued through the day, but it was a fairly good day symptom wise. So I decided to take another 1.5mg dose Monday night. The next morning I felt pretty good., but in the afternoon and evening I felt very warm, off kilter and had a small headache.

This caused me to reduce my dosage to 1.25 mg. I didn't want to drop all the way down to 1mg and I didn't want to repeat the 1.5 so I went right down the middle. I woke up every 2 hours throughout the night. I had dry mouth and skin upon each waking. I had funny heart flutters in the afternoon, but they were gone by the time it was time to take the LDN. I decided to go ahead and take another 1.5mg dose that Wednesday night.

In the middle of the night, I woke to find that my fingers were swelling so I took off my wedding rings. When I woke at 5am, my fingers were so swollen that my rings wouldn't go back on. By that afternoon, my fingers had returned to their normal size. Other than a slight bit of fatigue from waking up in the middle of the night, I had a pretty good day. So Thursday night I took another 1.5mg dose. I slept well from Thursday into Friday, but Friday morning from midnight to 5am I woke 3 times.

That brings us to this morning. I actually had a pretty good day, but I woke with a slight headache. However, it went away after a few hours. I did feel fatigue through the day as well. I plan on taking another 1.5 mg. I'm so thrilled that things are going well this time around. I don't remember taking this many 1.5 mg in a row before. I'm hoping that I'll be able to up my dosage to 1.75 before long!

My Mom had to endure this ....

What this teenager wouldn't do to watch a little Doogie Howser. Remember, this was before VCRs were really big much less DVR's. I had to watch all episodes live (IN THE LIVING ROOM NONE-THE-LESS!).



Then there was the year I met this marvelous basketball player and drooled over him. Oh who am I kidding, I still drool over him a bit almost 2 decades later.


Then I was in love with Patrick Dempsey BEFORE he was hot!



Then there was Michael J Fox



See what all my Mother had to endure?

Happy Mother's Day Mom. Thanks for putting up with all my celebrity crushes! :)

Dose 2

I slept all night and woke up with no headache after the 2nd 1mg dose of LDN. I do remember having some vivid dreams, but none really vivid enough to keep me awake. This is the huge problem I have with LDN. So hopefully it will remain this way. I did wake up a little "swollen" and "hot," but I can tolerate the tiny bits of this if it indeed helps my immune system function properly.

I'll probably go ahead and increase to the 1.5 mg soon. Usually I have much more symptoms than this on even the 1mg. So I'm pleased as punch to be making some headway already.

Lyme Awareness

Part of Lyme Awareness is truthfully being away that Lyme just never really goes away. So in this truth, I have to look at myself. I have to remember that it is always there. It may be hidden, but it is there. I must keep working to keep my immune system in good shape so that the Lyme bug doesn't come out and wreck my body.

Over the past few months I have experienced several health set backs. I've been on antibiotics twice for different things and recently (this past week) experienced the ever so much fun urinary tract infection. I didn't go get tested for it, but I knew it was there. I also have this most wonderful supplement for Urinary Tract Support called Mannose D Powder. I decided that I would give it try and see if it would help before going in to the doctors to get tested (and then antibiotics when the test proved positive).

It's something that can be taken 1/4 teaspoon to 1 teaspoon 1 to 3 times a day. In the past, I have used 1/2 teaspoon twice a day. This time since my symptoms were so severe, I decided to go ahead and max dose it at 1 teaspoon 3 times a day. I did this for 3 full days and then decreased it to 1/2 teaspoon 3 times a day. Yesterday I did it for 1/2 teaspoon 2 a day and today I haven't even taken my dose yet. However, I'm not going nearly as frequently and things are improving. I'll probably stay at this 1/4 teaspoon 3 times a day for a few more days and then stop. If things go back, then I'll have to go see a doctor for testing. However I'm confident that things will stay great.

With all of this in mind, I decided it was time to go back to the regiment that I should have been on. Back to the LDN. 1mg last night. I can tell today. :( Headache, swollen hands and feeling hot (though I don't have a temp). I just got to push through this initial phase. Wish me luck and remember

Stay Lyme Aware.

Lyme Awareness month

It's Lyme Disease Awareness month. Check out your local PBS station to see if they are playing Under Our Skin this month. It the Raleigh Durham area, it's being aired on May 17th at 8pm on UNC-TV (most people's Channel 4 I think). Check this documentary out. The first time I watched it, I got sad. The second time I watched it, I got mad. The third and fourth time I learned something new. Please DVR it so you can watch it time and time again.

I still have my Lyme Green ribbon up, though I'm in desperate need of a new one. This one has been out for a year! Share the Lyme Light by educating others on this disease.

since I last posted

Two sets of friends are in need of your prayers.

I don't want to name names, but both set of friends I've known for a while. Two of them I've known since elementary school and the other two I've known for ten years.

W & J lost their father late last night, early this morning. When I was in elementary school, I was extremely close to W & his Dad. His Dad had a way that just made me chuckle. He looked just like Yosemite Sam and whenever I think about my elementary school friends ... his son is one of the first that comes to mind. I just saw him for the first time in quite some time Easter 2010. I gave him a huge hug and he called me my mother's name until he realized that I was the tiny little Jennifer all grown up. So please pray for my friend's family.

V & J lost their Uncle early yesterday morning. V was one of my first friends after I married my husband. She was one of the first people in my world that didn't know me by Jennifer (insert maiden name). We worked together and her little brother would come in often to hang out while we worked our hind parts off. During the time we worked together, I became close with her mom & dad. Their Uncle that passed was their Mom's brother. While I've never met him, I know the close bond that their family shares. Their Uncle has been sick for quite some time and while it was expected, it's still a difficult time for their family.

My heart aches for all of them and if I could, I'd put my arms around each one and let them know how special they are to me. I'm just not sure I'll be able to see any of them anytime soon.

I've also heard that in the last week we've lost 2 people in the Lyme community. If I do say so myself, this week stinks.

I know I know

I know I've been quiet. Between being really busy at work and being really busy at home and being sick off and on, I've just been quiet. There have been a couple of anniversaries and birthdays.

Health: I'm okay, but the past couple of weeks I've had several really bad migraines. I'm pushing through them and finally today it eased off. I'm hoping that it will be through, but I think it has to do part weather and part stress.

Anniversaries: Rob & I celebrated our 11 year wedding anniversary on the 15th. Then two days ago, it was the one year anniversary of my Grandfather going "home." Today was the 2nd anniversary of my friend Pam going "home."

Birthdays and a BIRTH day: My niece Piper turned one! Happy Birthday Piper. My sister had her 5th baby and he's precious.

April has been quite a month, a busy month. I am glad that May is almost here.

62 Tornadoes in NC

Yesterday was a frightful day in North Carolina (and surrounding states). There were 62 tornadoes. I spent a good portion of 15 minutes in the bathroom terrified, though most of the day shaking in my skin. I thought there was a good possibility that we'd get hit by one of the many tornadoes. There are 24 deaths in North Carolina confirmed so far.

Many stores including a Lowe's Home Improvement store were destroyed. One university has suspended classes for the duration of the Spring Semester because of damage to the building. Many schools will be delayed or closed. Many families lost their homes and many people lost loved ones.

Thankfully, my neighborhood was unscathed and as far as I know all my friends and family members are safe. However I know people that are friends with people that lost family. They are devastated and for that I am devastated for them.

I'm still kicking

I just haven't been around much lately. I've been working hard and for some reason neglecting this.

Yesterday I had a very exciting day. I drove a little over an hour to meet someone I've been talking with online about Lyme. I am now proud to call her a friend. I spent quite a long time there and we even watched Under Our Skin together. We talked a lot about Lyme, but mostly about life.
Yesterday I felt as if we were old dear friends that were hanging out on the couch instead of people that were strangers less than two months ago.