Belle Photo!

Hurricane Irene

So the rain and wind are crazy. I mean really here where we live, it's only a little stronger than a terrible thunderstorm (without the thunder). The wind though .. it's ridiculous!! This morning around 6:45, our power went out for a couple of hours. I tried to sleep through the outage and it came back on. Because I was so exhausted, I slept longer. I got up around 10am and as I did, the power went back out. Tried to go back to sleep (I just prefer to sleep through power outages so I don't realize what I'm missing!). Decided at almost noon to leave for lunch and the power came back on. I've read online that my neighbor's power went out again. I'm sure it's not the end of mini power outages.

We went out for pizza and then went shopping. I mean why not? The rain was going sideways because of the wind. Umbrellas & Wind don't mix. Anyways, we saw several garbage cans knocked over. Many branches from trees all over yards and in one case there was one huge branch on someone's front porch. Doesn't appear to be all that bad here, but over at the beach ... I have friends posting pictures from their back porch ... well it appears to be at least knee high water. They ain't leaving unless it's on a boat with their flippie floppies.

anyways, we're safe.

A Hurricane is a coming

Hurricane Irene is suspected to make landfall sometime over the next couple of days. Friday night/ Saturday morning. Don't know how bad she'll be. I think we'll get rain & wind here. But I'll keep you up to date if I can (IE if we don't lose power and or internet). We are outside the "Hurricane Warning" by a couple of counties. But our county does have a Flash Flood watch for overnight.

Some of my beach friends are leaving and some are staying.

***

Now speaking of unusual weather: As some of you might know, Virginia had a 5.8 Earthquake the other day. yes I felt it at my home in North Carolina! It was a loud enough that I thought it was a garbage truck right up on my home, but I felt my body start to move. I thought how odd and went to see which garbage company was making such a racket only to realize there were no trucks out there. It was then that I realized that more than likely it was an Earthquake. Though I did have brief thoughts that our Shearon Harris plant had an explosion of some kind!

What Lyme gave to me

So I was telling a good friend this story and she was absolutely blown away. It was after thinking about what she had said that I realized that Lyme Disease gave me a truly wonderful gift.

Prior to my Lyme Diagnosis, I was terribly shy. And when I say shy, I mean sometimes if I had to talk in front of people or to new people ... I would literally get sick afterward. Now one would think that because I was in the band, colorguard, winterguard, and a dancer that there was no way I could feel that way, but truth be told ... when I was participating in those items I was portraying a character. I wasn't me.

As soon as I stepped onto the football field, I was a different person. Ask me about Guard and I could have talked for hours. If you knew me back then, you may not have realized I was shy because well ... you KNEW me. The trouble was getting to know me. My best friend has always said that if people would just get to know me then they'd love me. The trouble was letting them in to get to know me. Some people just had the gift to get right inside my heart and others I put up this wall.

Then I was diagnosed with Lyme. Friends left. I felt an overwhelming sadness. People I knew a lot of my life were disappearing like flies. I figured they just couldn't handle. What's odd is that they handled things just fine when it was undiagnosed and I just had symptoms, but once the doctor put a name on it ... they just vanished.

I started a small group with a few of my Lyme friends that live in North & South Carolina back in the last part of 07. It was my friend Sarah (that I went to the HS graduation a couple of years ago) in South Carolina & I that were discussing the possibility of a small group. We talked back & forth on the computer and created a great name for our group (I don't want to say b.c I don't want it to be inundated with new requests from people). Sarah drew something up and my friend Missy graphically designed it so that we would have a beautiful logo.

A couple of weeks in, we had about 8 friends. Our close online buddies that we talked to daily. I never imagined that it would grow to be more than 15. Soon we got our first request for someone we had never spoken to. We knew that we had to keep our small group safe so I created a small survey to send to the people that asked to join us (especially for those that we did not know or someone in the group could not vouch for!). As I go to different Lyme events, I find out if they are on FB. As I become friends with them, I add them to the group. Now we are almost at 50 members.

You may ask, how does this get back to what Lyme gave to you? Well, I have friends online that understand exactly what I've been through. In reverse, I can understand exactly what they are going through. We are friends. It's simple as that. We are advocates for Lyme Disease. Some of them have transitioned from "My Lyme friend" just to "My friend." You may remember when I went to the NC Lyme Walk and met several Lymies. I'm not very close online friends with several of them. I had no problems talking with them and I didn't even feel a tinge of nausea of meeting them and talking with them. This is just a pure gift of Lyme.

The story that made my friend go "What? seriously? You did that?" Well during the week I had been talking with two online friends. Whitney (my friend that had the benefit raffle and the articles in the paper) & Sarah J. We decided that we would get together at Whitney's house and hang out for the morning. Whitney & I had never met Sarah, but thought it would be safe for us to meet at Whitney's house (we've all been talking for sometime). Well Friday morning Whitney's Mom called and told me that she wasn't feeling well. That we should postpone our fun morning. (and by Fun I mean, sitting there complaining about Lyme Disease and planning our first advocacy event). So I called Sarah J and left a message. I thought we wouldn't meet and started heading home.

She called me back and I mentioned that maybe we could meet anyways. So I plugged in a new address to the GPS and off I went. So yes, I drove to a mall (one that I rarely go to) and met with someone I've never met with before and it was as if we were old friends hanging out. Crazy. It was exactly that way when I met Whitney the first time. Now granted all these people I have been talking to online for sometime so it's not exactly like they are new people, but still.

I just realized the other day that I have now met 15 of the 47 Lyme people in our small community. That's amazing! I'm in the beginning stages of planning an event for all of us (like maybe a Saturday luncheon somewhere to plan for how we can improve the knowledge of Lyme Disease in North Carolina). So excited!

June 10, 2008

I've recently been thinking about how far I've come. So I went digging for something I wrote before I started this public blog. Look at exactly how far I have come.

June 10, 2008. I had been in Lyme treatment for 1 year and 3 months when I wrote this in a private journal.

He will not give me more than I can handle. I have heard that so many times and yet I grow weary. In theory, it's a wonderful sentiment. In practice, how much more can I take? No one on this earth truly knows the amount of pain I am in except for my wonderful husband. He's seen me swollen. He's seen me vomiting until I am basically unconscious. He's seen me unconscious.

He's seen the nurses try and try again for a vein to give me medication that I desperately need. He's seen me lying on the bathroom floor with no strength to even get up yet somehow I manage to pull myself together, get dressed and head out the door to do my 8 hour day at work only to get home and collapse for another night of ...

pain, swelling, fevers, vomiting, nausea, coughing, pain, twitches, massive sleep OR insomnia, nightmares, breathing difficulty, fatigue, emotional outbursts, migraines, brain fog, difficulty swallowing, ear ringing, blurry vision, rashes, seizures, burning sensations in my arms and legs and feet, loss of control of my feet, muscle weakness, and those are just a few of the things that I can remember right now.

I just woke from another 3 hour nap sweating so hard that my clothes were soaked. My head is killing me from yet another headache. I have floaters in my vision that won't go away. My brain isn't working the way I need it to. Thank GOD that some of the symptoms on my at random list have gone away. I don't know what I would do if I still had seizures on a daily basis.

I change one set of horrible things for another set. It's like .. I'll give you this treatment. It will give you nausea and diarrhea and vomiting, but if I give you this one ..you'll have daily headaches and severe weight loss. If we do nothing at all and just treat the symptoms, all those other things might come back (including the seizures, muscle weakness and twitches so severe that people started asking if I had Parkinson's).

I write because it's an emotional release. I am tired. I am weak and yet in the morning I will pull myself together one more day ... put on my work clothes and head to work for my 8 hour day.

I have some friends that are going through some tough times. They don't know it, but they have gotten me through my most difficult days. When I lack the strength I need, I look to them for guidance. They are the strongest ladies I know. From my point of view, they have two things that give them their strength. First is their belief that our God can do all things and the second is their families.

I can not thank them enough for their outward strength because it is through their strength that I get my strength to go through each day because I have the same two things they have. I have my belief that GOD CAN DO ALL THINGS and I have my family.

If you are my true friend, you know what I've been through and you have been there for me. I can not thank you enough for the gentle hugs, kind emails, and phone calls. They mean more to me than you will ever know. Here I sit at 11:21 wondering .. how I will get through tomorrow. I will get through tomorrow by my own strength .. my own will to survive and knowing that God will not give me any more than I can handle. A nice sentiment ... a truthful one. Pray for me. I need for all prayers to land on God's ears. I need strength and compassion from those around me. :) I love you all.

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.