Okay.

Sometimes I have a hard time letting myself believe that the way I'm feeling is okay. Not just about Lyme, either. Just about life in general. And, since it happens to me, I have a feeling it happens to some of you, too. So, let this post serve as a reminder--if you're having a bad day, if you're having a good day, and even if you don't know what kind of day you're having--everything is okay.

Being sad is okay. Being happy is okay. Being lazy sometimes is okay. Not being able to get out of bed is okay--tomorrow is another day. Laughing is okay. Crying is okay. Being afraid is okay. Eating that chocolate bar is okay. Watching entire seasons on Netflix in one sitting is okay. Having big dreams is okay. Being content is okay. Wanting more is okay--that's what pushes us. Liking what you see in the mirror is okay. Not liking what you see in the mirror is okay--we all have those days. Spending time with friends is okay. Not wanting to spend time with friends is okay. Being passionate about lots of things is okay. Having an opinion is okay. Saying "I love you" a lot is okay. Being sick is okay. Being healthy is okay. Being tall is okay. Being short is okay. Feeling well is okay. Not feeling well is okay. 

Being you is okay. 

Everything is okay. 

A Review of The Fault in Our Stars.

So, you probably expected a post like this. Or maybe you didn't. Does anyone even read this anymore? Are you even reading this now??

Anyway, if you know anything about me (or even if you don't know anything about me other than what you've read on my blog) you know that I think a little deeper into things than the average person...and probably a little deeper into most things than I should. So, when I went to see The Fault in Our Stars this weekend (which was INCREDIBLE, by the way. Seriously, read the book and then go see it!), my brain kicked into high gear and I haven't been able to slow it down since. And, what else would I do with an overflowing brain than let it pour out through my fingers?! 

So, here you go...a sick girl review of The Fault in Our Stars.

First of all, I was originally afraid to read the book. I didn't want to be that stereotypical sick girl reading a book about a sick girl. But, clearly, I got over it. And I read the book. Three times. Once because I just wanted to read it, a second time because I wanted to decided exactly how I felt about it, and a third time because I needed to read it. Needed. There was something about it that was incessantly calling my name until I picked the book up again. And, the third time is when it all really came together for me. 

"I fell in love the way you fall asleep: slowly, and then all at once."

Okay, so that was cheesy. But, for real, I am not one to get really into a book. I read sometimes, and I generally like what I'm reading, but this one hit me a little differently. I fell in love not with the characters necessarily, not even with the love story that everyone is so obsessed with, but with the way it made my heart feel--like everything I feel on the daily is legitimate, allowed, and okay. 

I guess I should back up and explain for a second in case you haven't read the book. I don't want to give too much away in case you do want to read it (which you should), but I'll give you the general idea. It's a story about a girl with cancer, who falls in love with a boy who also has cancer. He is in remission, she isn't. They genuinely live life while they're together, they go on some adventures, and of them ends up dying at the end of the story (but I'm not going to tell you who, because you should read it!). 

So now, after that incredible synopsis of the story, you are probably wondering how it made me feel so validated. And, honestly, I don't have a cut and dry answer for you. But, I can tell you that the tears that were pouring down my face as I watched the movie were probably not the same kind of tears that everyone else in the theatre was crying. I think it's pretty normal to be reduced to a puddle after watching the movie. But, I wasn't crying because someone died. I wasn't crying because they were sick. I was crying because it was so real. 

I don't have cancer, but I do live with something very similar--something that sometimes makes going on throughout the day feel next to impossible. I am not on oxygen, but I do have moments/days where breathing seems like the absolute hardest thing on the planet. And, I am not being kept alive by an experimental drug, but I am being kept alive by the nearly twenty pills I take twice, some three times, a day. The story is not my story. It's not anyone's exact story. But, the feelings are real. The good ones and the bad ones. That's another thing that was incredible about this movie; when I wasn't crying, I was laughing. So many times I found myself chuckling because they hit things so spot on, and the jokes they made were perfect. And, when I left, my heart felt full. Full because they made a movie out of something that is the reality of so many people's lives. Full because I was feeling so incredibly grateful for the people in my life--the people who came to my mind along with each character in the movie. Full because every person that watches that movie and chooses to look beyond just the love story will see the reality of life for someone who isn't healthy. Full because that movie was the truth. 

Being sick wasn't glamorized. Being sick wasn't made out to be anything that it isn't. Their struggles were realistic. Their happiness was realistic--the fact that not every second of the life of a sick person is miserable was made pretty clear, and that in itself is awesome. And, their sadness was realistic. Their fears were realistic. The ups and downs were all there. 

If I could buy movie tickets/the DVD/the book for every single of one you who who is reading this (again, I'm under the assumption that someone is actually still reading this) I would. If you want to do one thing for someone in your life who is living with any kind of chronic illness, or even for someone in your life who is the caretaker of someone living with a chronic illness, you need to see the movie. If you need a pick me up, or a realization of what really matters, you need to see the movie. And, if you have an overabundance of tissues in your house and you need to get rid of an entire box in a short period of time, you need to see the movie. 

Thirty one.

Well folks, we made it. Together, we made it through 31 days on this Lyme awareness journey. Can you believe you've been reading all the crazy things that have spilled out of my brain and out through my fingers for 31 whole days?! (I'm not sure whether to apologize for your misfortune or say thank you for sticking it out with me!)

Let's recap what we've learned this month, shall we? 

1. Lyme is serious. 

2. Awareness matters. 

3. Your person with Lyme needs you, whether you know what to say or not; just be there. 

4. It's important to think before you speak. Words hurt more than you can imagine, but they can also help more than you know. 

5. Your person with Lyme is trying their hardest. 

6. Yes, someday I will get a job. 

7. Nothing about Lyme is fake. It's a real disease. It's a real struggle. It's all very there and very real. 

8. Yes, I really need to take all this medicine. 

9. Your person with Lyme wants you to ask questions. Don't make assumptions. Don't just wonder. Ask, we will answer. 

10. The littlest things mean the most. 

11. Check yourself for ticks. For real. Do it.  

12. Oh, and did I mention...Lyme is serious and awareness matters?

So, now we have made it to the part where I tell you thank you twelve more times. Thank you for sticking it out with me--not just this month, but through this whole journey so far. Thank you for telling me that you're reading what I have to say--it means the world to me that my words are reaching you. Thank you for taking the time to become aware. Thank you for doing it for me, and thank you even more for doing it for yourself. 

This isn't the end of my blog's life, of course. But it is the end of this month specifically set aside for awareness. I hope you have learned something. I hope you can walk away knowing something that you didn't know when you sat down, fastened your seatbelt, and decided to go on this journey with me. 

Let's not look at this as the end of something. Let's look at it as a beginning. I hope it's not just the end of Lyme awareness month. I hope it's the beginning of a lifetime of awareness. I hope it's the beginning of you taking the extra couple minutes to help ensure that Lyme doesn't happen to you. And I hope it's the beginning of your efforts to look at things a little differently. 

Perspective matters. Awareness matters. 

You may now unfasten your seatbelts. Thank you, from the bottom of my heart, for taking a closer look into the Lyme life with me. 

"Okay" guilt.

You know the term "survivors guilt"--the guilt that someone feels when they survive something that takes someone else's life? Well, as someone with a chronic illness I have "okay guilt." Similar idea, but obviously not as severe as survivors guilt. But frustrating and upsetting, nonetheless. 

I don't always feel it. Some days I want to scream it from the rooftops that I am feeling okay. But other days, I'm almost afraid to say it. 

The hardest part for me is when a friend--specifically a Lyme friend--tells me that they are having a bad day. If I'm having a good day, I don't want to rub it in their face that my day is better than theirs. But, at the same time, I want them to tell me about their day, always. No matter if it's good or bad. (So really, I'm a huge hypocrite.) It's a constant struggle between telling them about my good day so that they are reminded that good days can happen even when they are having a bad one, or just keeping my mouth shut and listening about their bad day. I would obviously never tell them I'm having a bad day when I'm not, but I've become a pro at keeping the subject on them so my day doesn't even have to be addressed. The fear of making them feel even worse is constantly there. 

I also struggle with saying that I'm having a good day because I don't want to settle on the idea that how I'm feeling is as good as it's going to get. I'm afraid that if I say I'm having a good day, or that I'm doing okay, when I'm not feeling 100%, that I'm settling with how things are. You know how at the hospital, they ask you how bad the pain is on a scale of 1-10, and you're afraid to say 10 because you don't know if this is actually the worst pain you're ever going to have and you want to save that 10, just in case? I feel the same way about saying I'm okay. If my day is only a 6/10, that is okay in terms of it being better than a 2/10...but I don't want a 6 to be good. I want a 10/10 day. So, saying that a 6/10 day is okay seems like settling. 

So, basically, I'm "okay" impaired. That's what you can take away from this post. But, it doesn't mean that I don't appreciate my okay days...I just am not ready to scream them from the rooftops yet. 

But, if you do hear "I'M OKAYYYYY!" randomly floating through the air anytime soon, you'll know I've figured it all out. 

Co-infections.

In my first post this month, I told you that I have two (possibly three) co-infections along with my Lyme. I don't think I really ever went into what my co-infections are, though. There are more than a dozen tick borne infections that are recognized in the United States, and they all have their own crazy, and sometimes scary, symptoms. 

(Co-infections happen when you are bitten by a tick that carries multiple infections, and it is nice enough to pass them all to you!)

The first co-infection I was diagnosed with (before I even had my Lyme diagnosis) was Ehrlichia. There are two types of Ehrlichia--HGE and HME. HGE (also known as Anaplasmosis) stands for Human Granulocytic Ehrlichiosis, and HME stands for Human Monocytic Ehrlichiosis. The difference between the two is which type of white blood cells it attacks. In my case, I have HGE. The bacteria affects my Granulocytes. 

Ehrlichia/Anaplasmosis usually starts with a high fever, muscle pain, fatigue, and headaches. In my case, I was originally told it was Mono. So, think Mono symptoms, and you've pretty much got the gist of acute Ehrlichia. However, after the initial onset it can also cause low white blood cell counts (makes sense, since it affects the white blood cells), elevated liver enzymes (one of the symptoms that lead to my diagnosis was an enlarged liver due to elevated liver enzymes), kidney failure, and respiratory problems. In a lot of cases, diagnosis of Ehrlichia comes after treatment for Lyme doesn't seem to be making much of a difference. Treatment for Ehrlichia is done with antibiotics.

The other co-infection that I have gotten a positive blood test for, and have been treated for (and actually am currently treating a relapse of) is Babesia. Babesiosis is an infection caused by a malaria-like parasite. (Yeah, that freaked me out when I first learned about it, too!) Unlike Ehrlichia, which infects the white blood cells, Babesia infects the red blood cells. Babesia is not only tick borne, but also can be transmitted through a contaminated blood transfusion. 

The symptoms of Babesia are very similar to Lyme. As the infection progresses, the most common symptoms are drenching night sweats, anxiety, fevers, pain in the bottoms of the feet, headaches, muscle aches, nausea, and vomiting. In a lot of cases, the symptoms are so similar to Lyme that the Babesia infection isn't suspected, and is only discovered by blood work. It's much more dangerous in people who have weakened immune systems--which is why it is a big deal for those of us who have Lyme. The treatment for Babesia is anti-malarial medications.

I also have been clinically (without a blood test, just by symptoms) diagnosed with Bartonella. Bartonella is an infection of the cells caused by a parasite. It can be transmitted by both ticks and fleas. The initial infection is usually pretty mild, but once it decides that it's going to stick around for a while, it affects the whole body. Symptoms include fevers, fatigue, headaches, swollen glands, sore throat, extreme neurological symptoms (Bartonella is often suspected when someone's neuro symptoms are more prevalent than any other symptoms) and a weird striped/streaked rash. The rash looks like stretch marks, but appears randomly and not in connection with any other body changes (weight gain, weight loss, height changes, etc.) and often appear at the same time as other new symptoms. The treatment for Bartonella is antibiotics. 

(Okay, phew. We made it through all of that information. Are you still with me? Take a deep breath. Get a snack if you need to. We're almost done!)

So basically, what all of that boils down to is the fact that Lyme treatment is hard...but trying to treat Lyme with the added confusion of co-infections is seemingly a million times harder. Every co-infection on it's own a struggle, but add two or more together and it things get really difficult. 

Also, on every co-infection symptom list that you find, at the very bottom is a word that I have purposefully left out of my descriptions until now. That word is "death." I have chosen not to talk about that because 1. what good does it do anyone to think about death? 2. I'm not letting that be an option in my life, and 3. Isn't death a symptom of just about everything these days? Yes, these co-infections are serious. Yes, they could kill us. But, that's not anything worth thinking about, if you ask me!

The point in me throwing all of this information at you was not to tell you how bad these co-infections are for people who have them. The point was, like every other post this month, to make you aware. Aware of what people in your life who have these struggles are actually dealing with. And aware of what could happen to you if you decide that tick checks and proper tick prevention isn't important. 

Lyme isn't the only tick-borne threat. Please don't let these things happen to you. 

Herxing 101.

In the past, when I've been herxing, I've always just said that I'm feeling extra bad or that I'm reacting to a new medicine. Just because it's easier to explain that way. But, since this month is for awareness, I figured maybe I should go into what herxing actually is.

The word herx is short for Jarish-Herxheimer Reaction. It was named after two people who first wrote about details of the reactions in the early 1900's. Herxing doesn't only happen with Lyme, though. It also occurs with Rheumatoid Arthritis, Tuberculosis, Syphilis, Relapsing Fever, and Candida. And, not even everyone with Lyme experiences herx reactions. Much like everything else Lyme related, it is different for everyone. 

Herxing happens when bacteria die off and a large amount of toxins flood your blood and tissues. (Generally caused by the start of antibiotics or other treatment.) Basically, the body realizes that it's being taken over by the dead bacteria and toxins and it tries to get rid of the bad stuff quicker than it actually can. (You know, like when you see a spider crawling on you, and you freak out and try to get the spider off...but your body can't move as fast as you want it to?) During a herx, the bacteria that is inside of your blood cells is killed off (yay!) but the host cell is killed off at the same time (noooo!). When your cells start to die off, your immune system goes into panic mode and causes a vicious inflammatory response. 

So, basically, lets look at it like this...

There is Lyme hiding in your knee--->You start new treatment--->The bacteria (and cells) die off in your knee--->Your immune system realizes something is up and calls its inflammatory friends over to help attack--->Your knee swells up. 

Similarly, if your Lyme is in your brain at the start of new treatment, your brain will react the same way as your knee did. This causes an increase in neurological symptoms. Bacteria in the heart causes a herx reaction that includes cardiac symptoms. Bacteria in the lungs causes a herx that includes respiratory symptoms. Etc.

The hardest part of a herx is trying to figure out if what you're feeling is actually a herx, an allergic reaction to the new medication, or just an increase in symptoms that just happened to correspond to the start of a new medicine. (Yes, it's as confusing as it sounds.) There are some symptoms that generally go along with a herx, though, that can kind of help you pinpoint what is going on. Also, timing is key--a herx generally starts a day or two after starting a new medicine.

Again, a herx is different for everyone, but these symptoms are pretty common across the board...

-increased fatigue

-increased joint or muscle pain

-skin rashes (In my case, I get splotchy red rashes, and open sores on my scalp.)

-irritability (I am a redhead, so irritability is pretty much the norm in my every day life...but, it is definitely worse when I'm herxing.)

-extreme dizziness (I feel like I am floating above whatever I'm sitting/lying on.)

-sleep disturbances 

-muscle cramps 

-night sweats (I sometimes wake up and wonder if I sleep-swam.)

-migraines

-swollen glands 

-metallic taste in the mouth (I don't get metallic, but I do sometimes feel like I'm eating a sharpie.)

-chills

-nausea

-fevers

-heart palpitations (Sometimes I feel like my heart is going to flutter out of my chest)

-bone pain

-mental confusion (...what?)

Of course, that just scrapes the surface, but it kind of gives a general overview of the weird world of herxing. So now you know. When I tell you that I'm feeling bad after I start a new medicine, this is what is going on. And, even though it sounds rough (and don't get me wrong, it is rough), it's not all a bad thing. Herxing means that something is happening. It means the antibiotics are reaching the bacteria. And, in order to get better, things have to happen; bacteria has to die. 

So, each herx may feel like a million steps back, it really is a step in the right direction. A weird, bumpy, uncomfortable step in the right direction...but a step nonetheless. 

Bad weather, full moons, and pressure. Oh my!

(Warning: my brain is struggling right now. Words are tough. No promises for this post. Read at your own risk.)

For the most part, my Lyme cycles every four weeks. That's the norm. Every four weeks, Lyme can either change state or go into remission. So, what that means is that every four weeks, the Lyme gets bored and switches things up. It can either move itself into a cystic form (making it harder to treat it because the bacteria is enclosed in a bio-film that is really hard to penetrate with medicine) or it can just move to a different part of my body--into muscles, organs, wherever it wants to go. Or, it can go into remission. That, of course, is the ultimate goal. So far, though, that hasn't happened.

But that's not really what I was even meaning to write about here. I started writing this to talk about all of the things that affect my Lyme. 

So, we've established that the normal 4-week cycle changes things up. But, I also  am extremely affected by weather changes, full moons, and pressure changes. (Oh my!)

 

Right now, it is storming. My head hurts more than normal. It's hard to kick my brain into gear. My chest hurts. My fingers are swollen and look like ten little sausages sticking off of my hands. All because it's storming. 

Any pressure changes do the same thing. So, a few days before it's going to storm, I know it. I don't get new symptoms, but the ones I do have definitely intensify. When I go away somewhere with an altitude change, I feel it. Anywhere that your ears would pop, I feel it throughout my body. When I had my port, I thought it was just my port that was making me hurt with pressure changes, but it still happens even without the port. 

But, the full moon is by far the worst. For the week or so before a full moon, I feel like I'm repeatedly getting run over by a truck. An eighteen wheeler. 

So basically, the point of all of this is to explain a little more of how the Lyme bacteria works. I've talked a lot over the past month about how all of this makes me feel, and things that I have learned from it--a lot of the emotional aspect. But I haven't talked much about how Lyme actually works, biology wise. (Who ever would have thought that I, Leigh Burbank, would actually choose to write about anything biology related?!) 

And now that I've sat here and written literally ten different possible ways to end this post, and then deleted them, I'm just going to say goodbye. 

Thank you for making it through this post with me. I know it was a struggle. Whew.