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.