A Whole Lotta Rides

The theme of this years North Carolina State Fair is a Whole Lotta Happy. So I will do my blog posts in the theme of the photos that will be posted. So this post is A Whole Lotta Rides.

We arrived at the fairgrounds around 8:30 in the morning. This gave me the opportunity to take photos of the rides. As you can see in the photo below, it was very cloudy today. Aside from the moments of downpours and massive wind, it was perfect weather. It wasn't too hot and it wasn't too cold.

We were able to get right up close to the rides so we could take close up shots without losing the clarity by using a zoom lens. This was one of my favorite shots of part of one ride.



And here is another:




I personally am not a rider of fair rides. I don't like spending 6 to 8 bucks per ride for one after paying 17 dollars just to get in (7 dollars for the ticket and 10 dollars for parking) for one and for another ... my stomach just does not handle rides. I do, however, enjoy taking photos of them. :o)

And PS: I loved being about to walk around for SEVEN hours yesterday.
I think it's honestly the most I've walked straight
(work doesn't count since I spend most of my day
sitting in a chair teaching a child how to read)
and neither do UNC or WCU games
b.c again I spent most of the time sitting.

My legs are paying the price today. My calves are in brutal pain.
I'm sure it's from the exercise and not from the Lyme.
However, I will keep an eye on it.

Photo Tease

Wherever might I have gone? I wanted to leave you with a taste of what I did today! And btw: You will have the pleasure of having a new post every day the rest of the month.

Oh like my new hair cut?

Late Night With Roy

It's a tradition at Carolina the last 7 years to have a Late Night With Roy. Last night's included, I have attended two. The first I attended, I honestly don't remember. I was so sick at that time that I was fortunate just to be able to go. It was my dream to go see the Carolina basketball team play and I felt so close to death's door that I had to get there. It was completely awesome, but I don't remember much b.c my photos didn't turn out well.

I use photographs as a back up to my mental memory. This year Rob & I took both cameras. One has a really great lens for taking close up pictures from far away. This was one of my favorite photos from my regular canon.



Me after the end of scrimmage. I had walked down to say hey to my old boss from my WCU days! Her daughter is a junior at the UNC women's basketball team.



Anoop Desai was there too and got called out by ESPN's Stuart Scott (the EMCEE for the evening's events).



But what did I go there to see? UNC MEN'S BASKETBALL!

Lyme Merry Go Round

Public Health Alert Article is out

Go read the Public Health Alert. September issue is out now. Many great articles and it's a privilege to be an occasional writer.

If you're joining my blog from the PHA, welcome to the blog.

Follow up 10/10/09

August was my worst month this year. It was absolutely horrendous. I compare it to months that I had in 2008. I had exhaustion, headaches, word finding problems, memory problems, joint pain in hands & legs, balance issues, nausea and twitches in my legs. These problems lasted about 2 weeks of the month, but they were the worst two weeks I've had this year.

September gave me exhaustion, poor stamina, joint pain and swelling. I also had unexplained histamine reactions resulting in swollen eye lids. October has proven to be tough with the bout of Bronchitis. I walk into my LLMD's office with knowledge.

The good news is that each bad spell I had ended on it's own. I fought back with my "strong" immune system and the symptoms disappeared (excluding the Bronchitis). In August, we ran a bunch of urine and blood tests. I received the results of these tests today and what they mean for my treatment.

My sodium level is borderline low again. This means I have to add sodium into my diet yet again. My iron is better than he expected, but was still borderline low. My vitamin D is extremely low. Zinc was also overtly low. In the urine testing, it showed that I have low glutathione, and low B6. I also had a nutrient test done. The three things that were overtly low were Zinc, Magnesium and Selenium. It also showed borderline low levels of B12, inositol, Vitamin A, Copper, Chromium, Vitamin E and Vitamin C (which is absolutely astounding considering how many Grams of Vitamin C I take in a day).

He would provide me with "good news" to be followed by the "bad news." "Well, your metal test was within normal range." (YEAH) "Your Zinc levels are overtly low." (BOOO)

You may ask why are so many minerals defiecent. I can answer this. EDTA (not only to help with metals, but also to help with biofilms) not only binds to metals, but it binds to minerals. Therefore depleting my mineral supply. We were aware of this problem prior to the blood test and I was given Trace Minerals. However, Trace Minerals make me so nauseated that I can't take them. So he's going to give me specific minerals that I need. So I will be taking Vitamin D, Magnesium, Zinc, Selinium and a B6 complex. However because I have a sensitive system, I may not be able to tolerate them. If I can't tolerate these, I have been advised to get IV minerals.

The urine testing also showed high level of yeast. So therefore I will begin a regiment of Diflucan. We're going to hit it hard and take 4 full weeks of Diflucan. I will then take one week off and then take another 4 full weeks. I won't go on any new supplement until I'm off the antibiotics. However, I will start the Diflucan as soon as I get the prescription filled.

Rewriting Lyrics

If you want to share this, please do so by only sharing the URL to this blog. This was my creation and it took me weeks to write this. Do not copy & paste it onto your own blog. Just copy the link for this and post that instead. Thanks ***



I'm notorious for changing lyrics to music. I've done it since I was little. Well I've never gone all out and changed the WHOLE music lyrics. Well last year when I had my PICC line, I changed the lyrics to several songs. It made me laugh so hard I almost peed in my pants when I was done.

One of the songs was "Barbie Girl" by Aqua. Now I do not like the original song, but my lyrics I think are completely awesome. Wrote it a few days after my PICC line insertion when I was frustrated that I couldn't even brush my own hair. You can hear the real song here:

http://www.youtube.com/watch?v=p68rj879Zyg

- Hi Lymie!
- Hi Friend!
- You wanna go for a ride?
- Sure, Friend!
- Jump in!
- Ha ha ha ha!

I'm a Lymie girl in the Lymie world
My arms in plastic, it's fantastic
You can brush my hair, I can't reach up there
Exasperation, Lyme is my frustration

Come on, Lymie, let's go party.

I'm a Lymie girl in the Lymie world
Wrapped in plastic, it's fantastic
You can brush my hair, PJ's everywhere
Exasperation, Lyme is my frustration

I'm a disabled girl in the normal world
Dress me down, take your time, I'm your Lymie
You're my nurse, sit converse, tell of hideous pain
Wrap me here, Ice me there, I'm the drug store.

We can't touch, we can't play
We can say I'm always Sick , oooh whoa

I'm a Lymie girl in the Lymie world
My arms in plastic, it's fantastic
You can stop and stare, my pills are everywhere
Exasperation, Lyme is my frustration

Come on, Lymie, let's go party , ha ha ha, No
Come on, Lymie, let's go party nooo, nooo
Come on, Lymie, let's go party, ha ha ha, No
Come on, Lymie , let's go party , nooo, nooo

I can't walk, I can't talk, it makes no sense you see
I was bit by a tick, I was hit with panic.
Come right out , give a shout, let us scream "Oh" again
Hit the docs, I'm in shock, let's go Lymie

We stay in, can't go out
We can say I'm always Sick
We go out , Start to pout
We can say I'm Car Sick.

Come on, Lymie, let's go Party, ha ha ha, No
Come on, Lymie, let's go Party, nooo, nooo
Come on, Lymie, let's go Party, ha ha ha, No
Come on, Lymie , let's go Party, nooo, nooo

I'm a Lymie girl in the Lymie world
Wrapped in plastic, it's fantastic
You can start to care, I'm hurting everywhere
Exasperation, Lyme is my frustration

I'm a Lymie girl in the Lymie world
My arms in plastic, it's fantastic
You can brush my hair, I can't reach up there.
Exasperation, Lyme is my frustration

Come on, Lymie, let's go Party, ha ha ha, yeah
Come on, Lymie, let's go Party, nooo, nooo
Come on, Lymie, let's go Party, ha ha ha, yeah
Come on, Lymie , let's go Party, nooo, nooo

Can't wait for this to be done.
Well, Lymie, We're just getting started!
Cant wait till the end.

Dose 5

I have a very strange reaction to antibiotics. It's very very weird and it has always happened.

Dose 1: Something always happens to make me think maybe I shouldn't take it. Sometimes it's (TMI) massive bathroom breaks, sometimes it's a strange rash, sometimes it's swelling somewhere. This time was no differnet. My left eye started swelling and it appeared that I had pink eye. I knew this would go away by the evening (the trend with most of my 1st dose episodes).

Dose 2: It generally goes better than dose 1. I always get excited that maybe nothing will happen while on antibiotics.

Dose 3: ALWAYS get nauseated & puny on Dose 3. As the tradition continued, I was nauseated all morning. However I had almonds with me so I ate them and felt better afterwards.

Dose 4: Last night, I felt so puny. I felt like I was going to barf at any second and was all hot & sweaty. I finally went to bed at 7:30 missing my favorite show. Now if this tells you anything, this show is the ONLY show I watch live anymore. All the rest I watch on DVR. But Survivor ... I hve to see it live! In i'ts entire season, I have only missed 3 episodes LIVE. Make that four now.

Dose 5: Always Always Always get the diahrea. I've already been to the bathroom 3 times and I just took Dose 5 15 minutes ago.

I have 15 doses left. Let's hope that the tradition doesn't continue b.c if so, I will be very sick by Sunday. At least I'm not having any other of my herx reactions. This is a VERY good thing.

I'm still coughing up a storm uncontrollably. I try not to take cough syrup b.c I know that I need to cough junk up. If I take the cough syrup, it will surpress my cough so that I won't be coughing stuff up. Bad part is that ... I fear. If I cough, I'll ... well .. I think you can guess what I'm scared will happen and it has to do with both "ends" if you get my drift.

I could take an expectorant, but I try to take as little medicine as possible. I will see my LLMD for my appointment tomorrow. We'll see what he says about my still lovely hacking cough.

Well off to run to the bathroom. Oh joy!

Bronchitis Update

I'm still coughing up a storm. I stopped by my LLMD's office this afternoon. After speaking with my nurse, I plunkered in my "favorite chair." She plunkered down right in front of me with needle in hand. After two tries, she got the IV inserted and the drip began. First IV I've had since February and the first time I've had an IV insertion since July of 08.

After the 2 and 1/2 hours of IV (which is a nutritional IV consisting of 50 grams of Vitamin C plus some other nutrients), my nurse informed me that my LLMD does want me to go on the antibiotic. So ... here we go again. Hopefully this time ... ONE antibiotic for TEN days (instead of FOUR antibiotics for over a YEAR).

All of my other s ymptoms are pretty much gone except the horrible cough. It's been a while since I've been a fly on the wall at my LLMD's office. I forgot how very busy my LLMD is. He was busier than an one legged man in a butt kicking contest. He was running from patient to patient trying to hear what the office staff and nurses were telling him about other patients in between visits.

Today was a crazy day. I know it's about to get crazier for him. I'm sure he'll get patients that would have gone to Dr. J in South Carolina, but don't want to wait for his transition to DC or even drive to DC.

I see him on Saturday for my follow up. Hopefully I'm feeling a lot better. I got my test results today. I am not looking forward to the appointment either b.c some things didn't look good.

Doc in the Box Visit

** Edited down at the bottom **

Woke up this morning feeling even worse so I decided to make a quick stop to the doc in the box. When I say quick .. I mean really quick. I got online to ensure that I knew where the doc in the box was located. I saw a link that said something about getting in line now. So I registered for a 10am appointment. I was the 5th one in "line" but I was the first on to be seen b.c I registered online. How's that for prompt?

They asked for my symptoms: Fever, Cough, Body Aches, Runny Nose, Headaches

They took my temp: Normal (Go figure that I had taken a Tylenol an hour prior .. of course my temp was normal)

They took my blood pressure and Ox: Normal.

Listened to my chest and stuck a huge stick up my nostrils which made my eyes water.

Doc in the Box comes in and listens to my chest. Said he was just waiting on the rapid flu test to come back, but he speculated that I did not have the flu ... but a really bad case of Bronchitis.

He leaves and comes back with three prescriptions and the good news. I don't have SWINE FLU, but only a bad case of Bronchitis. The thing is that I am not sure that I want or desire to take these prescriptions. First: One is an antibiotic. I've not had an antibiotic in over a year. There is no telling what kind of Herx reaction I'll have when I take it. It's also the antibiotic that gave me the worst reaction when I was on it for Lyme Disease. Second: He wrote a prescription for Steroids. Anyone that's anyone in the Lyme community knows you should run screaming from Steroids. I questioned him and he said that if I don't take it ... I could wind up in the hospital. What he doesn't understand is that if I do take it, I could wind up in the hospital. *sigh* Third: he wrote a prescript for a cough medicine. The strongest they have besides a narcotic. I am *really* sensitive to cough medicines. They knock me out on my backside.

There is not a single thing he wrote for me that doesn't have the red flags screaming. I'm going to have the hubby fill them for me. Try to get in touch with my Lyme doctor. The problem is that his office doesn't open until Tuesday. If I continue to go untreated, I could wind up in the hospital. If I go ahead and take these things, I could wind up in the hospital.


What's a Lymie to do?

*** My Pharmacist did not fill the cough med script. She showed hubby the strongest over the counter stuff for me. She did fill the other two. I love my pharamcist. She even gave me an easier way to take the antibiotics (filled a liquid instead of tablet like it was written). So once I get the go ahead from my wonderful doc ... I will have easy way to take it. Though she said "don't shake vigorously. that will make it taste even worse. Tilt it side to side like this easily." LOVE my pharmacist. Who do I love more than my pharamcist? My husband. He's the one that went to the pharmacist armed with questioned. He came back and gave me all the answers! ***

Please Pray

So back story. I used to be sick all year around with some sort of sinus infection. It generally would start off as something simple (like seasonal allergies and develop into a raging infection). I think I spent most of December & January sick, March & April, July & August, and October sick. It would start off with a running nose or cough, turn into a massive headache and soon a fever would develop. I would go to the doc in a box to be given the diagnosis I know "Sinusitus here is Amoxi to take for 10 days. See you in a month or two." I could diagnose myself. Oddly enough it seemed fitting that it was I that pretty much diagnosed myself as having Lyme Disease before a doctor labeled me.


So flash forward to this year. I have been so actively healthy that I haven't had a treatable bout of sinus infection in well over a year. In fact, in the last 2 plus years the only way I've treated sinus infections were by an IV of Vitamin C plus other immune boosting vitamins. Now if I lived under a rock, I would assume that this case of "funk" was seasonal allergies that would turn into a sinusitis. However, I don't live under a rock. I live in a world of TV's, news stories and internet. I live in a world of people who talk about what they've seen on the news.

You might hear about how they have most recently chosen Rio as the Olympic site for 2016 instead of Chicago, or you might hear about celebrities deaths, or anything really. The thing that has most people in a panic though can be summed up in 2 words. SWINE FLU. Now they can change the name all they want .. H1N1 ... but still .. everyone calls it the SWINE FLU.


I've heard the following phrases in the last week:

My mother has Swine Flu (spoken by an adult)
I think I might have the Swine Flu (spoken by yet another adult)
I know 5 people at work that have the Swine Flu and they aren't connected (yet a different adult).

Those are just a random sampling of the thought that has been planted in my head.
Well I woke up yesterday with a random small sore throat. I had been sneezing the day before (which is my huge clue that something allergy is a brewing). I whole heartedly believe that I have a case of seasonal allergies, but ... the world is infected with SWINE FLU. If I go to the doc in the box and present with my symptoms (and in parathesis my rationale for why it's NOT the SWINE FLU

Runny and Stuffy Nose (which can be present in regular seasonal allergies)
Low Grade Fever (in my case is generally present in regular seasonal allergies)
Sore Throat (in my case is also always present in regular seasonal allergies)
Sore Body (well ... this generally only presents with the flu, but I have Lyme. All bets are off)
Chills (this is the ONLY one that has me worried that it could be MORE than allergies)
Headache (again ... always with seasonal allergies plus I have lyme headaches)

They are going to immediately think .. SWINE FLU. Get me in and out of there without a second guess of maybe it might be seasonal allergies.

Now ... there is a reasoning for this: ( I apologize in advance for such a bad joke, but ... it's true or so I think) My eyes ITCH like a prostitute that failed to get her exam after having relationships with multiple men. Oh that was SO bad.

On Thursday and Friday< I was sneezing really bad. My eyes began to itch. I woke up Friday morning with a sore throat (from drainage from my nose). As the day progressed I felt worse and worse. By the evening, I felt as if I probably had a fever. I do. It's low grade. I went to bed promising my husband that IF I felt worse in the morning I'd go to the doc in the box ... all b.c of the newsworthy aforementioned SWINE FLU has become the two words everyone is talking about lately. With my job .. I would endanger many if I had it. It better only BE seasonal allergies. Please Pray.

I woke up this morning with a higher fever (though it's still low for normal people ... it's high for me. my normal temp is 97 and this morning my fever was 99. So for a normal person with a 98.6 temp that would be like 100.6 temp) and with body aches. My nose is stuffy yet runny. My eyes are still itching and I have a headache.

I have 1/2 a mind to follow my hubby to the LLMD this morning and have him go in for a mask for me to protect all the other sicklies just so I can speak with my nurse about what the possibilities are that I actually have something other than seasonal allergies and whether I need to go to doc in a box (whom I've aptly named Dr. Terry Fied) for a rapid flu test (who knows maybe she can perform one, but I'm not sure if those rapid flu tests .. are onsight at the doc in the lyme land box). (and this is my last use of parenthesis)

Or who knows .. maybe she'll convince me to come in and take a big ole dose of Vitamin C (50 Grams flowing in an IV bag ... which would take 2 hours to find a vein if we were lucky and then another 3 hours to inffuse)

SO please pray:

1. That it's just seasonal allergies and not SWINE FLU
2. That if my nurse wants to give me an IV ... that she can find a vein easily and it won't blow
3. That I'll feel better by Monday b.c it's going to be a long long work day and I'd rather not miss.


** Update ** I did not go to my LLMD's office this morning. I slept through the time that my hubby left for his appointment. Good thing too because the only people that were there was one office staff and the IV giver (that's not a FNP or RN and she wouldn't be authorized to give me an IV since Dr. P wasn't there to confirm that it would be okay). So I'm glad I didn't drive up there. Everyone was at a Cancer Walk so pray for the walkers.

I'm just going to stay put, drink lots of fluids and take Tylenol to keep my fever down and Zyrtec to keep my allergies at bay. Hopefully it won't get worse.

Prayers for a special LLMD

A few days ago, I heard about the most amazing Dr. J in South Carolina. I didn't hear about "him" because I've known of him for years. This amazing doctor was practicing in North Carolina. I had the opportunity to choose him, but I decided to against the popular Lyme physician and go with a lesser known doctor because of all the legal trouble's Dr. J was in at the time.

Upon exiting the state of North Carolina, he met with the SC big wigs in the medical community and had their support. However, their support has dwindled in the last two years and he is no longer welcome. He has made the decision to move his practice to DC. I believe that most of his patients are informed of this decision. So based on this information, I ask for you to pray not only for him during his move, but also for his patients that have moved from his practice from NC to SC and now to DC.

I wondered about all of this and was already praying for all of these things when I heard the rest of the news. Two or three (and this is all hearsay about the time line) weeks ago, Dr. J found out that his lovely wife had breast cancer. I am not sure about the specifics of her breast cancer, but my MIL is a breast cancer survivor. Please pray that Dr. J's wife can become a survivor as well. This is such a tricky disease with stages and spreading and I am not sure what stage his wife is in or if it's spread to other areas.

As if this wasn't quite a lot on Dr. J's plate, a week after he found out about his wife ... they learned that their 5 year old daughter has Leukemia. Please pray for Dr. J, his wife and his daughter as they undergo treatments. It is a scary situation for all involved. The saying is that God won't give you anything you can't handle. Dr. J has proven already that he is one tough doctor and man. He has helped the AIDS & Lyme community greatly. I imagine this will also give him the power to not only fight these two communities, but he will also bring his greatness to fight for cancer patients as well.

Sp please please pray for Dr. J, his family and all of the Lyme community (and in addition to all cancer patients and survivors and families).

Dozen

Dozen

Twelve

Two times Six

Two to the Third Power Plus Four

Three Squared Plus Three

Twelve is a very important number. Twelve is the number of years I went undiagnosed with Lyme Disease. But now I have another thing that equals 12.

After years of debating, hesitating and waiting, Rob saw an open door and took a chance. I had just ended a relationship with someone I cared for deeply, but I knew that the relationship wasn't going to be a long term one that led to marriage. He found out about the break up and asked me to go out with him. Even though I suspected that he would ask, I was surprised that he asked me so quickly. I decided I had to *think* about it and asked him to give me 24 hours. So over the next 24 hours, I composed a very long and detailed response in which I described every single reason it would not work. While I won't recount all of those reasons (nor do I remember most of them), one was a huge one. We lived over 300 miles apart from each other and I didn't see how a long distance relationship would work.

However, I took a chance knowing that he would probably be the "rebound" guy and at the end of the email I said, "Yes I will go out with you." This rebound guy has been with me the last twelve years. He has seen me at my very worst. I am glad that I have spend the last dozen years with Rob. He has made the last two times six years very tolerable even through the worst of times! Can't wait to see what happens in the next Three Squared Plus Three

Trinity of Health

I have been going through a very good spell. I have been happy. I woke up yesterday morning with a pain. It's a pain I haven't felt in a year. I stood up and felt a pain. I thought maybe I slept wrong and the pain would be gone by the time I got to work. The further I drove, the worse the pain got. By the afternoon, I felt like limping. I knew that it would be a mistake to limp around because well ... that would cause the other leg to hurt. Last night I finally went into my bottom drawer. I haven't gone in that drawer since I fell and hurt my wrist back when I got my picc line in. I pulled out my ice/heat pack (that I promptly microwaved for 90 seconds), thick ace bandage and ankle brace.

I applied the ace bandage all the way from my knee to my heel. Then applied the ankle brace and then next the heat. Consider this: Ace Bandage is the Father. The one that supports you from the base no matter what. Ankle Brace is the Son. This is something that is even more specific that supports a specific need. The heat is the Holy Spirit. It's something that you just feel. I could have used ONE of the three, but it would not have helped. I needed ALL THREE things to improve the pain. Is the pain still there this morning? Yes, but I have better mobility this morning because I used ALL THREE. The Father (the Ace Bandage), The Son (the ankle brace) and The Holy Spirit (the Heat).

John 5:19 Jesus gave them this answer: "I tell you the truth, the Son can do nothing by himself; he can do only what he sees his Father doing, because whatever the Father does the Son also does.

The Homebodied Hermit

Something has become abundantly clear to me in the last few years. I am a homebody. If I had my way, I would never leave the house. When I was in elementary school, I loved to spend all my free time with my friends. When I was young, I was diagnosed with Epilepsy. I was put on a medication to control those seizure and it worked so well I failed to remember most of the time that I had a seizure disorder. I continued to laugh, live, work and play with my friends even though there was a chance that I could have a seizure at any moment.

At some point, my neurologist weaned me off the drug that were keeping the seizures at bay. I was given a reprieve and it appeared that my seizures were no longer an issue. Though I was scared to go off them, I was having no apparent seizures. The only obvious health problems were sinus infections. I was rarely at home since I was in band and dance.

My first day of college classes, I was full of hope. Then it happened. I had my very first seizure. I didn't realize it was a seizure when it happened. It wasn't long before these seizure spells were happening so often that it was impossible to keep it a secret. Some spells were completely obvious leaving me rigid in the floor and unable to communicate. Other spells just appeared to outsiders that I was daydreaming. I began seeing a new Neurologist who prescribed me the magic pill from my youth.

There was only one problem. It didn't help. He increased the dosage and I was getting my blood drawn a lot. There was a fine line between not being therapeutic enough and being so toxic. My body seemed to bounce between the two and a lot. I felt as if that whole first semester I spent more time in an ambulance, at the ER or in the infirmary than I did in class. I had seizures in front of professors, in front of friends, in front of strangers, in stores, at church, etc.

I made a few friends that didn't care about the seizures. In fact, those friends helped me in many ways that semester. As time went on, I spent more and more time at "home." I went to class, work and sometimes church. I would get dinner and bring it home so I didn't have to fear having a seizure in the cafeteria. I would work in an area of the bookstore that had fewer customers just in case I had spell at work. At church, I felt like a recluse. I wanted to be apart of the group, but felt as if I put myself out there that I would just wind up embarrassing myself. Slowly, but surely I became more of a homebody.

I am no where near as bad as I used to be. I drive a good distance to get to work. I sometimes spend time with friends spontaneously. I'd rather spend time on my couch watching TV and have my friends come to me. That way if my health gets the best of me I am not in front of anyone else. It's hard for me to be around crowds, but in order to live life fully I have to do things I enjoy even if those things mean actually leaving the house (example: Carolina Game). Even though seizures no longer plaque my life, I still live in fear that today will be the day one happens.

If I stare a little too long, is it a day dream or a seizure?
If I twitch a little too much, is it just a twitch or the beginning of a seizure?

There are very few people in my life now that have ever witnessed my seizure days. I have it that way on purpose. I would like to keep it that way, but truth is I live in fear every day that they will come back. Today, I tripped. Today, I stared just a little too long. Today, I twitched. Now the question becomes, do I become my old hermit self ... or do I just keep on keeping on? If these things came back, it would be mean I would have to give up my license. It would mean I would have no job. "It" would force me into being a homebody once again.

I am a chosen homebody. I do not want to be a forced hermit.

Laughter Heals

If you read this before 4pm, I've added to it.


I truly believe that laughter heals. When I started dating my husband, he was the funniest person I knew. He made me laugh every second I was around him. In fact, humor is the number one quality of any of my friends. I have to be friends with people that understand my uniqueness and most of my friends have their own unique humor. I don't know if my friends could be friends with each other, but I enjoy each and every friend differently. Some I have serious conversations with and others .. well I act like I'm a 5 year old who thinks every single thing that comes out of the mouth is funny.

My husband and I never have company. Well I take that back, people come over and within hours they leave. We rarely (I could almost even maybe say never) have guests that come over, stay a while, spend the night and stay the next day a while losing track of time until they finally drive home. A few months back, I invited one of my best college friends to come out this way. We had not seen each other in 10 years, but he was busy with life. I was busy with life. So it just never happened.

Well last weekend I was on the computer and he mentioned that he had Friday through Sunday off. I suggested he come to the area so we could hang up (intending that he would hang out for a few hours, but then leave to go back home). It was suggested by my friend that a hotel room might be found so that he could not only have a few hours with us, but make the trip last a little longer. So Rob & I discussed it and decided he could stay in our guest bed room. That way we could stay up as late as we I could and then the next morning there wouldn't be any commute time before the fun could begin again.

Since I am easily disappointed, I decided the whole week to say, "I'm having company, but it probably won't happen. I'll be surprised if he shows up. " In all seriousness, people tend to be flaky. Generally something comes up to interrupt the fun. On Saturday, my friend arrived about noon. It took us about 15 minutes to fall back into the craziness that used to be our friendship. I'm sure anyone looking in at any 2 minute segment of our talks would have been like what is wrong with them, but it made sense to us.

By the end of the evening, I was laughing so hard that I was literally rolling on the floor and my abs hurt. Something that normally wouldn't be so funny got my tickle bone and caused fits of laughter.

*** To Be Continued Later this evening ... so if you read this before 4pm EST on Monday, come back and read the rest ****

Those fits of laughter caused my abs to ache, but it made my heart feel wonderful. We played cards and games that required math skills. That was hysterically funny b/c both Rob & I are both having trouble simple math right now. We also hadn't played these games in a few years and my friend had never played them. So we were having issues with the directions, but once we got going it was a blast.

I'm so glad that my friend had the opportunity to come visit and spend two days with us. It's probably the most fun I've had in months. Sadly, we all forgot to take photos.

Where was I?

When I was young, I heard others say, "I will always remember where I was when ...."
I now join the ranks. I will always remember where I was when I heard that Princess Diana died. I thought when I watched that it was the "moment" that would define the "where I was when" line of my life. I was wrong. Unbelievably wrong.



I remember where I was on September 11, 2001. Every time I photos or video clips of the day, I get chills and the same gasp of air that came from my mouth that day ... exits my mouth again. The morning that America was attacked by Terrorists I had the day off. If I had gone into work as normal, I would have not heard about this attack until I had gotten home. I worked at Belk and was always in my own little world when I was working. I'm sure I would have heard that we had been attacked, but I don't know that I would have gotten the gravity of the situation if I had not been at home to watch it as it happened.

I have a morning routine. I am very ritualistic like that. On days that I work, I have specific things I do. On days that I don't work, I still have specific things I do. Under no circumstances is the television ever turned on in the morning time. If I'm at home on a day off, I generally don't turn on the TV until much later. On September 11, 2001, I did something out of routine. I turned on the TV. As I was sitting on the couch watching the scene of an airplane hitting one of the twin towers, I thought to myself what a horrible movie. My instinct told me that this was something more than a movie and I kept watching with eyes open wide while calling my husband to the living room.

You see, for some reason, he also had the day off. "A plane just flew right into one of the twin towers," I yelled at him. We stood there in disbelief as we watched a second plane fly into the 2nd tower. We both knew at that point that this was no accident. I felt the gasp felt around the world.

I called work to let them know what was going on, but they had already received numerous calls from employees and spouses. That day, my husband was expecting a shipment from UPS. Both shipments were things that he had "purchased" using his frequent flyer miles. We invited the UPS delivery man inside to watch this obvious terrorist act. That whole day we were glued to the TV. In the days that followed, the compassion and unity of the people around America astounded me. We must not forget what happened on 9/11. We must not forget where we were on the day that America was attacked.

Let us not forget to acknowledge those brave men and women that lost their lives just by doing their jobs. Let us not forget how we felt the day our world was torn apart and also brought together. Let us not forget those on each plane, the Pentagon, the Towers and all Americans across the United States.

Oh, say can you see by the dawn's early light
What so proudly we hailed at the twilight's last gleaming?
Whose broad stripes and bright stars thru the perilous fight,
O'er the ramparts we watched were so gallantly streaming?
And the rocket's red glare, the bombs bursting in air,
Gave proof through the night that our flag was still there.
Oh, say does that star-spangled banner yet wave
O'er the land of the free and the home of the brave?

On the shore, dimly seen through the mists of the deep,
Where the foe's haughty host in dread silence reposes,
What is that which the breeze, o'er the towering steep,
As it fitfully blows, half conceals, half discloses?
Now it catches the gleam of the morning's first beam,
In full glory reflected now shines in the stream:
'Tis the star-spangled banner! Oh long may it wave
O'er the land of the free and the home of the brave!

And where is that band who so vauntingly swore
That the havoc of war and the battle's confusion,
A home and a country should leave us no more!
Their blood has washed out their foul footsteps' pollution.
No refuge could save the hireling and slave
From the terror of flight, or the gloom of the grave:
And the star-spangled banner in triumph doth wave
O'er the land of the free and the home of the brave!

Oh! thus be it ever, when freemen shall stand
Between their loved home and the war's desolation!
Blest with victory and peace, may the heav'n rescued land
Praise the Power that hath made and preserved us a nation.
Then conquer we must, when our cause it is just,
And this be our motto: "In God is our trust."
And the star-spangled banner in triumph shall wave
O'er the land of the free and the home of the brave!

Help Nathan & Tricia

Tricia & Nate are special friends of mine. Tricia has Cystic Fibrosis. Nate is her husband. April 2008, Tricia received a double lung transplant after giving birth to their miracle daughter. Nate is asking for help in raising money for Cystic Fibrosis. Last year I went to the Outer Banks and participated in the walk. I had so much fun.



Here is what Nate wrote on his blog about the special number NINE.
The following post is verbatim Nate's words and you can find the post by clicking this sentence.

Written by Nathan Lawrenson

9 is a very unique number...check this out...

Today is 9.9.9.

Wednesday, September 9, 2009.

Wednesday has 9 letters.

September has 9 letters.

It's the 252 day of the year...2 + 5 + 2 = 9.

The average life expectancy for a child born today with Cystic Fibrosis is 36 years...3 + 6 = 9.

A $9 donation to the Cystic Fibrosis Foundation can make a huge difference in the lives of 30,000 children and adults in the US alone suffer from Cystic Fibrosis.

I'm looking for 99 people to donate $9 each by 9pm tonight (EST) to my Personal Great Strides Account. If we can accomplish this, raising $891, I will be sincerely grateful! Every penny goes directly to the Cystic Fibrosis Foundation and their search for a cure for CF. Please, if you haven't yet, consider Clicking Here and investing in those who are living for that hope.

And, if you would like to help me accomplish today's goal, feel free to link this blog post, or repost it on your twitter, facebook, blog, etc.

Thank you so much for helping to make our future bright!

Nate

BTW, did you know Tricia, a CF patient, and I had our very first date 9 years ago this week?





**** to add to Nate's unique 9 post *****

His last name Lawrenson. It has 9 letters.

Also let's examine the amount of money they want to raise in total .. 891 .. Let's take a moment to add those numbers together so that we can get a single digit number. Do you wanna know what it comes to? For those with Lyme Fog... here ya go:

8 plus 9 plus 1 = 18
1 plus 8 = 9

Nate's "nickname" CF Husband = 9 letters

Go check out Nate's blog and donate 9 dollars to research CF.

Happy Blogoversary

It was one year ago today that I started this blog and what a year it's been.

*** Here is what I wrote ***

I am beginning this blog as a way to journal the memories that I have of my experiences throughout this health experience. I want to remember the good, the bad and even the oozy when I finally conquer Lyme Disease, Bartonella and Candida. At first, I may post quite a bit because there is quite a bit of "back story."

Some days may be filled to the brim with "adventures" and other days may have nothing. Some posts may be upbeat and happy while others may show my vulnerability.

I am a woman who believes that I was given this as a test of my faithfulness in God and I believe that God gave me this trial to show me that I have true strength. I have learned in the last two years that I am a lot stronger than I give myself credit for. I have come through this with a stronger relationship with my friends and a stronger relationship with God than I ever thought possible.

I am still trying to figure out the best way to start this so hang on as I figure out how much I want to share with the outside world. A lot of posts may be repeats of things I write on other websites. So buckle your seat belt, hold on to your seats, this is gonna be a bumpy ride.

Flu Shot? Not me!

I won't ever get a flu shot because of the Mercury and other ingredients. I was shown this funny video about the flu shot. I just had to share because I want to make you educated.

Explaining LDN

I mentioned earlier exactly what LDN was and I will explain the best way I know how exactly what it is and maybe how it will help. I will be taking this information from other websites and will try to show where I found each bit of information.

When I had my last blood work, my Natural Killer Cells were on the low end of normal. Natural Killer Cells are cells that fight against cells that don't have a "banner." (1) These cells fight against cancer, viral and other cells that attack our bodies. If we don't have NK Cells, then our bodies can not fight against these other cells leaving a very weak immune system.

In the last few months, I have been reading all about an old drug that has a powerful effect on those with different diseases. I have even seen about this drug on Lyme forums. Based on past experiences with my doctor, I jump on pretty much anything he suggests to help since everything he has done for me in the past has given me progress. It does not make me any less timid to try something new and I still do research on any potential treatment plan. However, I trust my LLMD with every treatment plan he proposes.

So when my LLMD suggested Low Dose Naltrexone (LDN), I was fairly ready to try something different. However, it did take me a few weeks to really jump on board. He starts describing LDN and tell me that Naltrexone was approved by the FDA back in the 80's to help drug and alcohol addicts beat their addiction. (2) Obviously, this did not settle in my brain. Why would I want to take something that was prescribed for drug & alcohol addicts? Then he explained that in 1985, a doctor discovered that it has immune boosting properties when given in teeny tiny doses for his HIV patients. (2) Then again he noted the improvements for his cancer patients in the 90's. Then, he noticed some improvements in autoimmune disease cases. (2) This picqued my interest. He told me to go home and research it while he would get in touch with the pharmacy that would compound it for me.

Now all that information is fine and dandy, but what does it do? How does it work? Well apparently it blocks the opioid receptors in between 2 and 4am when taken at bedtime. If I'm understanding correctly, this extended time of cutting off the opoid receptors actually causes an increase in endorphins and enkephalin production (3). And in some how, I am guessing this boosts the immune system.

A normal dose of Naltrexone is 50 mg. It causes opioid receptors to be blocked continously while the Low Dose of Naltrexone is between 1mg and 10 mg. I will be taking 4.5 mg which is the standard dose for a Lyme patient from my understanding. Last night was my 3rd night of LDN. First night, I slept very little. I was fatigued and miserable on the following day. I thought to myself that I would not be able to do this. Second night, I slept better and even had some nice dreams (opposed to the nightmares I have been having). I took a nap in the afternoon and last night was the third night of LDN. It was unbelievable. I had energy today. My brain was almost clear. If it keeps up like this, my 30 day trial of LDN will be over before I know it.


Check out the links by clicking the numbers above or by clicking the link below.

(1) http://www.medterms.com/script/main/art.asp?articlekey=21219
(2) http://www.lowdosenaltrexone.org/index.htm#What_is_low_dose_naltrexone
(3) http://www.lowdosenaltrexone.org/#How_does_LDN_work_

Started LDN

A few nights ago, I finally started the LDN. I just took a leap of faith. I will tell you one thing. It has made me exhausted. I don't think I'm getting full restorative sleep. Tonight is night 3 of it out of 30. I only have a 30 day supply with no refills so I once I run out .. i'm out until I go back in October.

I figured out a new and improved way to take some of my supplements. Use some kind of liquid (water, gatorade, juice, whatever) ... open capsules, pour capsules into liquid and use mixer to mix it up. Chug down! I figure some down is better than no down. I've had trouble getting it all down so i'm just taking my time and hope that this works out for me. I think i'm cutting out one that is really really nasty and I'm considering cutting back on one that makes me nauseated. We'll see.

I take EDTA and because i'm on EDTA it takes away all minerals so I have to be on Trace Minerals. Well I can't take the Minerals with the EDTA or it will have been like i'm growing grass and cutting it down all at the same time. I have to take the EDTA with food. I have to take the Trace Minerals away from EDTA so unless I find time in the middle of the night (Yeah like I am going to intentionally wake up from my nice slumber to take this which makes me feel immediately nauseated) it will have to be taken with another one that can't be taken with food. Well .. that means I feel nauseated from taking it. What a bummer. I've not felt nauseated in months and months.


In any case, I'm liking this new and improved way of taking my supplements. It has helped tremendously. SO no naysayers saying that I can't do that. B/c it's t he only way I can get them down simply.

Senate Bill Update and good news

Remember this post about Senators & Senate Bill 958.

I have wonderful news. Senate Bill 958 in NC has passed, been ratified and signed by Governor Purdue.

There were a total of 6 "votings". First was a vote to amend the bill. It passed 48 to 0 in the Senate. Then there was a 2nd reading in the Senate. It passed 47 to 1. They amended it a 2nd time and the amendment passed 44 to 0. The third reading passed 42 to 1. It went to the House and passed the second reading there with a vote of 110 to 0 and the Senate passed it with a vote of 47 to 0 to send to the Governor's desk for signing.

As you may recall, I sent out letters to all the North Carolina Senators and even visited Congress to speak to representatives about the bill before it even had an assigned number.

If you want to see the Ratified Bill, look here.

I am so stoked. I say Jennifer 1 Naysayers 0

Thank you all Senators & House of Representatives of North Carolina that are reading my blog. I appreciate you saying yes to the bill about disciplinary proceedings of the NC medical board. Thank you so much.

Quiet Month of August

Here are some synonyms for the word quiet:

"buttoned up, clammed up, close-mouthed, could hear a pin drop, hushed, inaudible, low-pitched, muffled, muted, noiseless, not saying boo, peaceful, quieted, reserved, secretive, silent, soft, soundless, speechless, stilled, tight-lipped, uncommunicative, unexpressed, nonspeaking, and whist."

I feel like this month, I have been reserved and uncommunicative. The bad days in August outweighed the good. That is extremely upsetting for me as I have had pretty good months since February. My husband had his appointment yesterday and we have two different views on how it went. I left feeling pretty rotten about the whole appointment and he left uplifted. Just goes to show you how different we are. Let's just make it succinct to say that he will be getting 6 IV's which will hopefully take care of a deficiency he has.

The good of the IV's will be that he *should* get more energy and it should bring up some nutritional levels that are really low. Since he's never had an IV before, our nurses should have no problems getting a vein. That will be very beneficial for him. The bad of the IV's is that we are finally *almost* out of the woods with my debts because of the things we've had to do financially. In September, he'll have 4 IV's. In October, he'll have 2 IV's and we'll both have follow ups. This doesn't include the financial burden of all new supplements for both of us. He says we'll make it and I just get really nervous and "clammed up." The other bad part is that these will take 4 hours out of his Saturdays. Fortunately my doctor's office is open on Saturdays, but who wants to spend their Saturday's at the doctors. Not to mention, these IV's are similiar to ones that I received at the beginning of my treatment. I know what they did to me and I fear they will do the same to him. I was able to be awake enough to drive home, but as soon as I got home I fell asleep for hours. They gave me tremendous headaches and he's already got those with the new medicine for Candida.

Speaking of Candida, He's already feeling the effects of Candida Treatment and he's talking about things I talked about 2 years ago. I think we found the bulk of his problem. Not Lyme, but Yeast. I won't even go to all the Cardiac problems we think (know) he has. It's too scary to think about. The good news is that he's lost many pounds of weight since his last visit. We're headed towards the right direction.

Now on to me: I have yet to start my LDN and I just get so nervous when I start new things. I need to just suck it up and take it, but the fear of the unknown has had me stalling for the last week and a half. I got one part of my blood work back and 3 of the numbers are out of range and 3 of the numbers are close to out of range. I have a fear that this means he'll want some IV work again on me. Two of us on IV's at the same time? There is NO WAY. I fear what the other blood work will show, but am grateful that they were able to show me the things that have come back.

So when do we go back?

The hubby goes back the first Saturday after Labor Day and goes for 6 Saturdays. On his 5th Saturday, I have my follow up appointment. On his 6th Saturday, I have my follow up appointment. I speculate we will both have bloods after that and then go back in 6 to 8 weeks unless we both are in need of IV's still at that point.

And PICC is a 4 letter word that I don't ever want to see again. Neither is PORT. The doctor says "IV" and those are the two four letter words that come straight to my mind. Well you might ask, "Well you've not had a PICC since February and prior to that no IV insertions since July of 08, why would it automatically mean PICC? Aren't your veins healing?" Well let me tell you a lil story.

A bit after my PICC was removed, they drew blood. You would think that after 7 months of no IV insertions or no regular blood draws that this would be a simple task. Uh no it wasn't. It was absolutely one of the worst experiences that I've had thus far. That was in February of this year. Fast Forward to August 19th. Keep in mind, I hadn't had an IV stick in over a year and I had only had blood drawn ONE time in over a year. The other times were through my PICC line.

I prepare for the blood draw by drinking LOTS of water. I see the Phlebotnist and warn her that I can be quite difficult to stick. Now in the last 3 years, I have yet to meet a Phlebotnist that could get me on the first stick. So I had high expectations of my dear friend who had never had the pleasure of drawing blood from me because only a qualified nurse can draw blood out of a PICC. She promised me it would be simple and easy and that the 13 vials of blood would be a piece of cake!

Because I have passed out in the past and I knew that I had passed out on a "simple" 8 vial draw, I requested to go to my old PICC room so that I could lie down if necessary. She gets things set up and says "Oh there is a beautiful vein." I do my breathing when the lady jabs me so hard that I felt my ears pulsing. She says she got it and starts filling the tubes. The whole time I'm praying, "keep flowing blood .. keep flowing" because I know what happens every time.

The blood always stops after 3/4 of a vial and then they have to jiggle the needle to squeeze blood out of turnip and it always turns into .. "Oh I have to pull this one and try again." Uh yeah it happened again. Two of them were pulling and prodding my arm trying to get the blood to come out, but in the end they pulled the needle and were ready to start again. I told them to go on to the next easy stick and come back to me later. They left me with my heating pad and water. The RN (whom I absolutely love) came back and said she'd work on finding the right vein for the blood draw. We worked together and finally found one.

After an hour, I finally left. Now I still have a small bruise on my arm where they manhandled me to try to get blood. SO you can see why when they say IV .. I think PICC.

My music

I love music. I love to hear music and I love to sing music (despite those around me saying .. who sings that song? Oh that's right, it's not YOU). :o)

So what's on my play list? Look them up. Some are fun and funky, silly & stupid, some I just love to sing and others well ... it's my music list. :o)

Lift Me Up by Kate Voegele
Breathe 2am by Anna Nalick
Why Can't I? by Liz Phair
A Static Lullaby's cover for Toxic by Brittney Spears (yes I know I know, but I said fun & funky remember)
I Want a New Drug by Huey Lewis & the News
Apologize by One Republic
I'm Yours by Jason Mraz
Animal I Have Become by Three Days Grace
Amazing by Janelle
Beautiful as You by All 4 One
Love of my Life by Jim Brickman
Mr. Sandman by The Chordettes
You Gotta Be by Des'ree

Back in the day

So my recollection of my childhood comes in spurts. And today I had wonderful memory. Two words: Charlie Brown.

Not the TV Show, but the song! No, I'm not old enough to have heard this when it came out, but my Dad had all these LP's and this was one I listened to over and over again. There's no telling how many needles we broke listening to this one record.

Glutton for punishment part 2

Was I glutton for punishment yesterday or did I turn out just fine. Well I have yet to determine the punishment of yesterday, but I will say I had a wonderful time at both (yes I said both) parties. How did I tackle each item on my list? What list you ask? The list of things of why I would have said no.

1. Driving to both places and getting lost:

Driving to Kellie's was a breeze. I've been there before so that made it easy. I came across another problem that I had to handle though. On my way there, I called Kellie to let her know that I was indeed coming. She warned me about the rain. Okay when she said rain, I thought it was just the standard rain. No this was a torrential downpour! Every single car had on their flashing lights and many were pulled off the side of the road. When I could, I made an exit to get gas and stayed there until the rain subsided a bit.

Driving back to the 2nd party wasn't as easy as I had anticipated, but I only made one wrong turn. Or rather I didn't turn when I was supposed to. There wasn't a sign for the street I was supposed to turn on so after I got all the way to the end of the road and turned around, I took a chance that the unmarked street was the street I needed to take knowing that if I made it down the street more than 1 mile that it wasn't the street. I had all but decided if it wasn't the street I was going back home. I found the guy's house easily. :o)

2. People and feeling at ease.

At Kellie's, I was immediately put at ease. After all, I did know some of her family from when I was in HS so it wasn't that I was in a situation where I only knew the hostess. My plan was to stay for a couple of hours and go home. I had so much fun that I wound up staying well past when I needed to have left. I didn't leave until past 4. This would put me being late to the other party, but I was having so much fun laughing that I didn't want to leave.

At the HS party, it took me a bit to feel at ease. However, I'm glad I toughed it out the first few awkward 30 minutes. If I had chosen to leave, I wouldn't have seen some of my very good friends. I won't list these friends, but it was nice for them to see me being myself! In HS I was extremely anti-social. I was an observer not much of a talker. I found myself walking from groups to groups (aka Cliches) actively participating in conversation last night. Most of the people there last night didn't really know about my health condition and the ones that did told me I looked marvelous!

As far as confined spaces, no one there had an obvious cold or illness. Hopefully, I will be able to keep my immune system in check. If I don't, I had such a good time that I don't care! :o)

3. Skipping my supplements.

I did it and I don't care! It was nice not taking a single thing in the day.

4. Fashion on both hands: I had not planned on wearing a dress. I'm not so much of a dress wearer, but for Kellie's party I wanted to wear my new dress. After all, I don't go to many events where a dress could be worn. So I wore my beautiful brown/white sun dress. :) Because I left Kellie's party so late, there was no time to change into the pair of capris and shirt I was going to wear. So I went straight to the HS reunion party in my dress. I got a whole lot of compliments on my clothes. I am so unused to that. It was such an odd feeling being asked where did I get the dress and it was so cute! It felt really good to be wearing something that fit in with what everyone else was wearing. I think I'm learning! :o)

5. Lyme rearing it's ugly little head. I only had a very few symptoms yesterday. One was losing my balance at the 2nd party on a number of occasions. I was embarrassed, but hope it didn't show. Fortunately, only one person said a word about my loss of balance. That person said it out of caring even though he doesn't know about my illness. He jokingly said I should "get that checked out" or "maybe you shouldn't be driving home" insinuating I must have had one too many (yeah for the record I didn't drink at all at the 2nd party .. not even regular drinks b/c I wasn't for certain that they weren't spiked ... which they weren't).

Bottom line is that I had so much fun. I left my house a little after 9am yesterday morning. I got to kellie's about 11:30. I didn't leave Kellie's until about 4:30 and arrived at the reunion about 6:45. I had only planned on staying an hour at the max. Uh yeah I didn't leave until past 12:35. I didn't get home until 1:05 this morning.

Some people knew exactly who I was and others were struggling for recognition. So that was quite funny because I knew they were remembering the interior/exterior of the girl I was and how could I possibly be her. I even heard, "There is NO way that you are that girl." OMG I almost wanted to crawl in a hole, but I didn't!

And I don't even know about pictures. I didn't take a single photo at the 2nd party. So we'll see if anyone posts them later.

This was my favorite photo of the night that someone else took. These are two of my friends from High School. One was a girl that I talked to often and the other is a guy that I had in a couple of classes. Spent the majority of time last night hopping from group to group, but I had my best time with these two!

What am I thinking?

I am glutton for punishment. Remember my friend Kellie? Last year we went to a HS football game and then we headed to Western Carolina for my Alumni Band Weekend. Go pester her to update her blog more often. :o ) But, I digress.

A while back, Kellie emailed me and invited me to her college graduation party. Let's break down these three words: College. A place where people go to get educated. Graduation: a word indicating that said person has gained such education. Party: A gathering of people invited by the host (aka Kellie) for socializing, conversing and recreation. But, I digress.

So I was invited to this college graduation party by Kellie for Kellie in honor of ... you guessed it ... KELLIE! Let me digress again. Kellie is not only a candidate for college graduation, but Kellie is a wife, mother, hostess of parties*, a marvelous friend ** and a generous person. To tell you all the things that Kellie has done for her family would take an entire blog post in and of itself, but I digress.

Kellie invited me to her college graduation party. Whenever I am invited anywhere I weigh the pros and cons of going to said functions and more times than not, I choose not to go. The cons (more times than not) always outweigh the pros. As much as I adore my friends, my health comes first and in most cases invitations generally are counter productive. Let's discuss the cons of this (and more times than not MOST invitations):

1. I would have to drive there. This is a 2 hour plus drive in which I will probably get lost at least once. 2. There will be people there that I both know and don't know. This would cause a potential for illness next week since there will be a huge amount of people in a confined space. 3. I would have to skip my noon supplements. This could also compromise my immune system. 4. I get very nervous around people ~ even people I know. Lyme is a very intense lil bug and sometimes it causes me embarrassing problems. I get nervous that those problems are going to rear their little heads and cause me to be extremely awkward. 5. I have to figure out what to wear! I never know whether or not I am fashionable and can be extremely embarassing to walk into a room full of people who are wearing jeans and a tshirt and I'm wearing a dress. OR the opposite. I walk into a room full of people who are wearing dressed up fashion forward clothing and I'm wearing jeans, khakis or worse yet .. sweatpants! But I digress!

I am sure that many of you can understand those cons for me as I'm sure that many of you have the same cons. Some of you can't even begin to accept invitations because of your physical limitiations so I'm sure that you are jealous that I could even consider going. But I digress!

I am headed to Kellie's graduation party as soon as I can figure out what I need to wear and print out maps to her house. I can't wait to see her family and friends. I haven't seen some of these people in probably 15 years. And 15 years ago, some of these people meant the world to me. But I digress!

So back to the glutton for punishment thing. About the same time as Kellie's invitation arrived, I received another invitation for a big class reunion. This "reunion" is a gathering of some HS friends that graduated between 94 and 98. I said, "maybe" but really thought I would say no when it came down to it. After all .. see reasons 1 to 5. And add one more. When I was in HS, I was NOT fashionable at all. These people (yes my friends and some not so much) judged me for what I wore. Why would I want to spend time with people who will probably judge me for what I wear now? Then I thought, why the heck do I care what they think? Why let one or two people spoil the fun for me? So unless something happens between now and 6pm tonight, I plan on going to this 2nd party. That's right. Two parties in one day. I am glutton for punishment, but I digress!



* see note above for defination of party
** click the link to "Western Carolina" above for defination of marvelous friend

All Quiet on the Western Front

In chapter 7 of this novel, it is stated:

Just as we turn into animals when we go up to the line . . . so we turn into wags and loafers when we are resting. . . . We want to live at any price; so we cannot burden ourselves with feelings which, though they may be ornamental enough in peacetime, would be out of place here. Kemmerich is dead, Haie Westhus is dying . . . Martens has no legs anymore, Meyer is dead, Max is dead, Beyer is dead, Hammerling is dead . . . it is a damnable business, but what has it to do with us now—we live

***
I have been all quiet on the blog front because I didn't want to admit what I have been feeling to spare my readers the gory details of my life. In the last week, I have been battling my emotional baggage. How do I mix the medical life with my personal life? How do I work around all of the medical jargon in order have any sort of personal life? If I ignore the personal stuff, my own sanity suffers. If I ignore the medical stuff, my own body suffers. How do I combine the two in order to maintain my health and maintain my sanity?

I just don't know how to do that yet.

Public Health Alert Article

A few months ago the editor Public Health Alert contacted me about whether I might be interested in writing an article for the newspaper. I hesitated at first, but then found an old blog post that I thought would be perfect. I tweaked it a bit and without further ado check it out on the Public Health Alert website. My article entitled "Taking Back My Life" is on page 9.

Keep your eyes open

Keep your eyes open at this website specifically for the September 2009 Newsletter. If you're not familiar with that website, it's the "web" version of a publication that is put out by many people. It educates people about chronic illnesses including Lyme Disease and other tick borne illness.

This is a "newspaper" that can be viewed online or can be purchased if you wish to have a paper version of it. It's only 30 dollars a year for 12 issues. You can also purchase in bulk past issues for 12 dollars for a box (I believe there are 50 in each box) to pass around at medical offices.

Keep your eye out for the next issue. I think you'll find something you've seen before!

*awwww*

This week's theme on the blog hop is favorite photos. Well I have a few I'd love to share! :)

First up: A very old picture when I was only 10 years old in the 4th grade.



All Together now ... Let's say it! *awwwwwwww*

Next up is from Atlantic Beach Trip. :o) Some of my favorite photos ever were on this trip.

Living the Lyme Life (bump)

**Updated** August 8, 2009***

Welcome to all of you that are new to my journey. Here are my most relevant posts to my health. Start at the top and work your way down for the Chronological Lyme Journey.

My Diagnosis
My Therapy
A day in the life of a treatment

My PICC Line Story Part 1
My PICC Line Story Part 2
Live Blood Cell first visit
Grey's PICC Line Story

Slow Progress
My LLMD appt
November 15, 2008 Update
Chelation Challenge
Mercury Toxicity (My Mercury test came back negative)

Living the Lyme Life Post
Aluminum Toxicity
PICC Line Removal
Two weeks post PICC

Two year anniversary plus supplements
March 15, 2009 Update
Post PICC Pics
Conflicted Lymie
CDC Positive Test Results

Ups and down of Lyme
Live Blood Cell of Rob & Me
Previous Photos of me
Small Victories

Curious Lymies Goes to the Doc
OCD about ticks
The Serenity Prayer
August 8, 2009 Update

Supplement Strategy

There ya go. The most important health blogs all in one place! Enjoy reading if you've not read them before.

Supplement Strategy

So when you have tons of supplements to take, you begin to develop strategies to take them so that you get them all in. I have been really slack on all my supplements lately so I needed a new strategy so that it would be easier to locate exactly what I needed to take when I needed to take them. I wanted to share because well it's so super fabulous!

I had this thought of color coding all the bottles so that I would know which bottle I needed to pick up for what time (example would be that one bottle might have a red, blue and purple sticker indicating I might take it for afternoon, dinner and bed). Off to Target I went to find something. It was then I discovered a massive pill organizer with the colors Red, Blue, Green and Purple on it.

The idea was coming into my mind very quickly. I ran walked over to the school supply section which was quite the madhouse (considering in NC it's tax free weekend AND back to school time). I found these simple stickies that I thought I could make work. And guess what colors it came in? Red, Blue, Green and Purple (plus yellow too).

I had already written out a chart as to which one I'd have to take upon waking, as soon as I got home, at dinner and at bedtime. So I brought out one bottle at a time and studied the pill organizer. I realized I would need to take that one 2 times a day. So I found the color sticky that matched the pill organizer slot it would go in and slapped that sticky right on top! I then went ahead and put all capsules in the slot for the week. Then I went on to the next bottle.

Here is what it looked like: The bottles in front and the ones I also have to take first thing in the morning when I wake, but I can't fit those things in the pill organizer. I just color coded them as if they would go into the organizer. :o)



Here is what my box of supplements looks like:



Also have a couple in the fridge.

And I also got a little shopping therapy while I was out and about (since it was Tax Free weekend and all). I got this really cute dress (but my face was really really hideous so I chopped my head off).

Bree got LungS!

I don't know the details, but Bree got her call and lung transplant today.

Bree's Blog

This couldn't have come at a better time for Bree. She was really struggling. On Tuesday's blog, she wrote this, "This 21% lung function business is really no jokes. I can't do much anymore. I just sit here, and i read, and thankfully since I am small I don't take up too much space, so that's a plus."

and on Wednesday she wrote, "And i know the same for myself. Because when I think life is impossible, the moment will come when it is possible, and in the blink of an eye, my world will change even though I thought that no one was watching or noticing."

I found it out on Alice's Blog.

Pray for Bree and pray for the donor's family. As much joy as I am sure Bree's family felt to receive such a gift, there is another family who is grieving today. Please know when you read Bree's blog that Bree does not mince words. She tells it like it is to live life with chronic illness that's only chance of breathing is a double lung transplant.

Follow Up Appointment

I would suggest that most Lyme patients have other "issues" that can cause symptoms to arise. These other things for me are Nutrient Deficiencies, Adrenal Weakness, Low Normal Natural Killer Cells, Heavy Metal Toxicity, parasites and potentially low iron.

When I got to my LLMD the first time, we discussed the markers for Lyme Disease. I had joint pain in unspecified areas (it jumped around), fatigue & malaise, sleep disturbance, memory loss,
history of tick bite with bulls eye rash and a positive response to antibiotics. In February of this year, I got a CDC positive test result in the IgeneX Western Blot IgM. In the next two weeks, I will be having another test to see how LabCorp views my Lyme tests. The state of North Carolina only thinks that you have Lyme Disease IF a "normal" lab pings positive results. They also want the results within 30 days of the lab AND I seem to recall that they prefer both IgM and IgG to be CDC positive. So I'm crossing fingers that my LabCorp test will ping a positive result.

I've been taking an enzyme called Nattoserrazime. It's a blend of two potent enzymes which is used for cardiovascular, anti-inflammatory, respiratory and immune support. The benefit to this is that it supposedly helps ward off bacterial infections and supports immune health. I am also on EDTA. EDTA binds to metals in the body and helps you get rid of them. It binds to even good minerals so in order to ensure that it's not taking out too many good minerals I will have to be taking a "Trace Minerals." However, I have to make sure that I take it far enough away from the EDTA or it will just be wasted money (IE it will bind to the Trace Mineral and take IT out of my body instead of any heavy metals). I will also be taking Curcumin (Ker Kume In). It's believed to also have an anti-inflammatory and antioxidant effects. It may stimulate the immune system as well. Lastly on the Lyme front, I will be taking Paracide Juglans. This stuff is NASTY! I don't know exactly what it does, but I do know that it also helps kill parasites.

Because of all of the above, I will be having a nutritional panel taken the same day as the Lyme test. EDTA will be a 2 month supplement. Parasides will end as soon as I finish the bottle (*yeah*). Since the beginning of my treatment, my adrenal cortisol levels have been consistantly going down. This is NOT good. So they will test my cortisol levels to see where they are and I will continue addrenal support.

Last time I was tested, my Natural Killer cells were in the low end of normal. I am to order something called Low Dose Naltrexone. Originally Naltrexone was invented to help drug and alcohol addicts. Well it became clear that it seemed to help immune functions and a while back a doctor studied this and realized that in a very small dose ~ it helped improve immune functions quite a bit. Low Dose Naltrexone has been used successfully in Cancer and HIV/AIDS patients and more recently they've been using it on those with bacterial infections (like Lyme Disease). I would be taking 4.5 MG of this LDN at bedtime to help raise my natural killer cells. (I believe that the dose they use for addicts if 50 mg .. so you can see it's truly a very low dose).

Because my Chelation proved that I had some heavy metals, I will be having a test to see if it has caused any damage. This test will be done about the same time as my blood work. We're also going to really check out my Ferritin levels because some symptoms I've been having the last few weeks have been indicative of Low Iron levels. I will start Iron supplements as soon as my blood test has been completed.

On my supplement list:

Nattoserrazyme
Adrenal Cortex
Cod Liver Oil
Curcumin
EDTA (total of 2 months)
Immuzyme
Liver Drainage
Methyl B12
Total B
Vitamin C
Paracide (finish bottle)
Ultraflora
Iron Plex
Trace Minerals
I have more, but those are on my list sent home today!

Tests coming up: (August 19)
CBC
Comprehensive Metabolic Panel
Cortisol
Ferritin
Natural Killer Cells
Lipid Panel
Parathyroid
Vitamin D (25)
Zinc Plasma
CD 57
Lyme IgG and IgM
Several types of Urine testing.
Spectracell Nutrient Testing

Exciting News Ahead

Well it's exciting for me anyways! and NO I am not pregnant! *stop thinking it*

You'll have to be patient about this upcoming news, but I will say that someone liked one of my blog posts a lot!

I'm ecstatic and I want to share, but I can be patient. :) Can't you? No? .. well too bad. You'll have to be patient anyways. :)

No amount of begging, pleading or coercing will be able to allow me to share. :o)

Got on the Merry Go Round

My first day at the new center went beautifully. There were a few things that made me feel uneasy, but I just went ahead about my day and ignored the few things that bothered me.

Hope tomorrow goes even better.

Ever Experience

** I will be rewriting this for Lyme Disease **

One of those Merry Go Rounds like this?



I'd like for you guys to go with me on this ride for a moment. Drop all thoughts on how you've ever felt on a ride like this and RIDE WITH ME. You're on it and someone is spinning it round and round. While you're on the ride, you might feel dizzy & nauseated.

This Merry Go Round represents my career. For the last four weeks, I've been holding on dearly for my life onto those black handles. It's been spinning faster and faster. I've felt a variety of things.

Emotions of staying on the Merry Go Round:

Pride: for staying on the ride for almost 5 years without falling off. Jealousy: for others that have easily transitioned off without showing emotions. Fear: fear of falling off the ride and getting hurt. Sadness: knowing that soon the ride will stop and we won't be able to go back. Surprised: when I get through the day without tears and how strong I've become. Anger: That the corporate office chose OUR Merry Go Round to replace.

Distress: about meeting new people on another Merry Go Round and their acceptance of me. Happiness: that I've been able to remain on the ride and remember the good times. Guilt: that others haven't been able to remain on the ride. Love: a reminder that I love teaching children and love everyone I work with. Overwhelming Urge to Vomit: because this ride is spinning so fast. Laughter: when doing something so silly because the loneliness has become overwhelming. Tears: have fallen freely because the Merry Go Round that was full of laughter and excitement is now empty.

Pain: Physical and Emotional Pain of closing down the Merry Go Round. Dizziness: Everything is going around so fast that I just feel unsteady on my feet. Loneliness: There are so few people left on the ride that it's just so lonesome.

Now suddenly this Merry GO Round STOPS! I'm thrown off the ride and on Monday I start spinning at the other Merry GO Round.

I'm terrified, excited, worried and happy all at the same time. I am terrified that the new people won't accept me for me. I am excited to be working with old friends (and even some new ones).
I am worried that my needs won't be met and that I'm about to fall to the bottom of the totem pole. I am happy to be teaching again!

I am truly most excited about getting to teach children again. I haven't taught in three weeks. That is a LONG time not to do what you love in life. I have to get back on the Merry Go Round and let my boss start spinning me again! Maybe this time I won't feel so overwhelmed as the last time almost 5 years ago when my Merry Go Round suddenly stopped. After all, I will be able to go visit the old Merry Go Round all next week. I don't think it will have completely shut down shop just quite yet.

Please pray for peace and calmness. Please pray for acceptance. Please pray that I won't relapse because of all the change. I am terrified of a relapse.