Saturday, September 26, 2009

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).

Wednesday, September 23, 2009

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

Saturday, September 19, 2009

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.


Thursday, September 17, 2009

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.

Monday, September 14, 2009

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.

Friday, September 11, 2009

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!


Wednesday, September 9, 2009

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.

Sunday, September 6, 2009

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.

Saturday, September 5, 2009

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.

Wednesday, September 2, 2009

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_

Tuesday, September 1, 2009

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.