I’ve got a TON of search engine hits about the May 21st Lyme Walk, so I wanted to post this.

We are less than 48 hours away from the biggest Lyme disease awareness event in Hampton Roads’ history! We thank all of you for preregistering, volunteering, and showing your support for this event! Here are some things to remember as we approach Saturday morning:

Our event centers on Shelters #1 and #2 at Mount Trashmore Park in Virginia Beach. We should park in the main park parking lot overlooking the lake; then the YMCA Overflow Lot down Edwin Drive on the left (not the YMCA lot); then the parking lot beneath the City seal. Please see the attached aerial shot of the park and map with directions from common major roads.

Registration will begin at 8:30 a.m. under Shelter #1 at Mount Trashmore Park. There you will receive your T-shirt, an identifying wristband, and a ticket for the prize basket drawings later in the day. If you chose “Offline payment” during online registration, you can pay your balance at the registration tables. We encourage you to move towards Shelter #2 to visit additional tables operated by The Liebell Clinic, Mosquito Squad of Virginia Beach, and NatCapLyme.

We will gather to prepare for the Walk around 9:50 a.m. Marshals will be placed around the lake between 10 a.m. and 11 a.m. for your safety. We will walk in a clockwise fashion (as you face the lake and Independence Blvd.) around Lake Trashmore, a distance of approximately 1.5 miles. You do not have to complete any set distance or walk around the lake several times. Please go as far as you comfortably can. Wheelchairs are available at the end of Shelter #1, near the concrete patio/grilling area. If anyone starts feeling poorly, please let one of our leaders or volunteers know ASAP. Do not hesitate to call 911 if necessary.

Please remember to bring:

1) Lunches for your family. Only chilled water and granola bars will be available under Shelter #2.

2) Chairs for your family.

3) The attached waiver, signed by everyone in your family who is walking!

4) Your camera should you desire to take pictures.

5) Sunscreen, bug repellant, and anything you need to stay safe and comfortable. Remember to take all regular precautions to prevent tick bites!

Here is a schedule of Saturday’s events:

8:30 a.m. Walk participant check-in begins
9:45 a.m. Final pre-Walk announcements begin
10:00 a.m. Walk begins. We encourage you to eat lunch with your family and friends after completing the Walk.
11:00 a.m. Walk officially ends, and marshals around the lake will no longer be available.
11:30 a.m. Drawings for prize baskets and other announcements
1:00 p.m. All of our belongings need to be removed from both Shelters by 1 p.m.

Thank you for all you have done to make this Walk possible and successful! See you Saturday for this groundbreaking Lyme awareness event!

I was feeling decent for a bit until last week. By decent, I mean a few times less shittier than normal. I don’t know why I got so bad last week. Lyme has a mind of it’s own, it seems. This week is my week on antibiotics.

I am so freaking grumpy today. I won’t even talk to anyone because… well, I’m being a bitch and ignoring them, but at the same time, I know I will have nothing nice to say to them. I really don’t understand why I get like that towards the people who have been there for me the whole time I have been sick. As soon as I am better, it goes away. Sometimes, it’s really not that I don’t want to talk to them, it’s that I really don’t even have the energy to say anything. And what do I say? Life in bed is oh so exciting.

There is nothing worse than 20 questions wen I am sick. When someone starts asking me question after question, I get SO ANNOYED.

Your health is so fucked and you are so tired that you do not even have the energy to think or speak. Not that I think half the time anyway. I think when people say “what are you thinking? you have to be thinking something” is funny now. Because now, I find myself just not thinking at all. If I was thinking, I don’t remember what about lol. My memory at its best is 2 days at most. My memory at its worst can be a matter of seconds.

The tiniest thing can piss me off to the point I do not want to talk to someone. It could even be their tone of voice. I sometimes remember something that happened a while ago, and then I decide it’s time to get mad about it. Typical woman, huh? Not really. The way Lyme affects your brain is much, much worse than any healthy person can imagine in their wildest dreams. I was also not this way before I got sick.

The feeling of Lyme is so unimaginable. I myself, could never imagine a feeling anything like this before I got sick. As they say, “you won’t get it until you get it.”

I though Bartonella treatment was hardcore. I thought it was the worst of all treatments. I was actually really convinced I didn’t have Babesia. Well, I do. And Babesia treatment is worse. It’s worse because your pain symptoms are much more hardcore, and at the same time, you have the brain problems too.

Ever since I got sick and before I even knew I was sick, my body was always so cold. 70 degress felt like 50 degrees to me. When I first got real sick, my feet were always ice cold, no matter what. I stayed cold most of the time. I start Babesia treatment, and then all of the sudden, my temperature is up and down constantly. I am always opening the window, turning on the AC, turning on the heat, turning my electric blanket off and on. When I would get real cold before Babesia treatment or sometimes, but rarely, hot, a bath would always stabilize my temperature for a very long time. That doesn’t work anymore. Thank God I live alone. I think I would drive someone nuts always messing with the heat and AC.

Another thing different that I noticed is that when I got a good nights sleep (which barely ever happened) on Bartonella treatment, the symptoms would get much better. That does not help the same with Babesia.

Babesiosis is an infection caused by a malaria-like parasite, also called a “piroplasm,” that infects red blood cells. Babesia microti is believed to be the most common piroplasm infecting humans, but scientists have identified over twenty piroplasms carried by ticks.

Symptoms of babesiosis are similar to those of Lyme disease but it more often starts with a high fever and chills. As the infection progresses, patients may develop fatigue, headache, drenching sweats, muscle aches, nausea, and vomiting.

Bartonella are bacteria that live inside cells; they can infect humans, mammals, and a wide range of wild animals. Not all Bartonella species cause disease in humans. Bartonella henselae causes an important emerging infection first reported in 1990 and described as a new species in 1992. It is mainly carried by cats and causes cat-scratch disease, endocarditis, and several other serious diseases in humans.

I’m not going to post the Bartonella symptoms because there are so many. Bartonella is the main cause of all the neurological, cognitive symptoms and more.

My blog posts are so negative, I know. I really take out all my frustration on the internet. I don’t yell at my real life friends or get mad at them. I’ll get mad at guys that won’t leave me alone though and yell at them. One of my best friends is a guy, and I never get mad at him because he’s definitely in the friend zone. We sleep in the same bed when he drinks too much and we do not touch each other at all. He hangs out in bed with me when I am sick. He has brought me trash cans to throw up in. Love him. I never thought I could be friends with a guy because they all hit on me and seem to have some type of expectations from me, sex or a relationship.

Anyway, a year ago on the 7th I was diagnosed with Lyme disease. A year ago today I left my husband.

When I am very sick, toxins are released in my brain since I have a brain infection. That is a herxheimer reaction. Since I got sick one year ago, not one day have I been the person I used to be. Not one single day. I look at old pictures and I smile. But at the same time, emotionally and in every way, I feel like I am looking at someone else.

When I first got sick and to this day, I would look in the mirror and I couldn’t recognize myself. Lyme sure does a number on your brain.

When I get very sick, and I herx very bad, there is this thing called Lyme rage. I would say I only had it bad 3 times. Some people have done things like punched through windows and worse. I threw things every time and punched a mirror. The only really badd thing I did was flush a weeks worth of meds down the toilet (which was a lot of money) because…. well I don’t know… I was frustrated and out of my mind. Every time I have thrown something, it was never at someone else. I have never hit anyone in my life or been a violent person. I can’t even watch fights that are not in movies. They disgust me.

Some things will trigger sever panic attacks. I watched “Under Our Skin” for the second time. The first time was about a year ago. After that I cried for over 6 hours. I have done that plenty of times. That is far from normal. I do it a lot. It can happen for no reason or something can trigger it. Even being in the car when I was real sick, I would get in it and the moment I got in it, I would start crying because of the pain and cry the whole time. Everyone knew to bring tissues in the car.

There are three things that bother me a lot. Number one was the miscarriage I had. Number two was leaving my husband. I don’t have feelings for him anymore, but it bothers me I am going to be divorced. Number three is looking at my tons and tons of medical papers I have.

It’s really hard to explain what goes on in the Lyme/Bartonella brain. You will never get it until you get it.

I may have posted this before, but it’s a good video on someone explaining Lyme and your brain.

And more videos, because seeing the people is powerful. There are some very bad videos, with people showing what happens in the terrible moments.

I have looked like this before:

I have not experienced this:

Her explanation of what it feels like when she is better (temporarily):