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.

Thank you.

Sometimes as I'm writing my blog every night, I wonder who is actually reading it. I look at my stats, I see how many views I have, but I still wonder who the faces are that go along with those numbers. Because, as much as I appreciate the numbers, what I appreciate even more is knowing that those numbers are people. People who I know. People who I don't know. People who have Lyme. People who didn't even know what Lyme was before they started reading my blog. Every single time my blog views go up, my heart gets a little bigger. (You know, like how The Grinch's small heart grew three sizes that day?) 

But, what really made me realize for the first time that my messages are getting across was a message I received the other day. It was from a girl I was friends with in highschool--a girl I was friends with before I even knew about Lyme. She told me that she had been reading my blog and that she was really glad I was writing it. And that in itself was enough to make my heart happy. But, when she told me about her mom's battle with Lyme, it nearly stopped me in my tracks. She told me that she has watched her mom go through a lot of the same things that I have, and she thanked me for writing about the hard stuff that most people don't recognize. It was the first time I heard someone who wasn't one of my Lyme friends tell me that they appreciated me telling our story. She doesn't have Lyme, but she is living a very similar story. She is looking at it from a different viewpoint--she isn't the one with Lyme--but she is living it. And, my blog spoke to her the way her message spoke to me; we both realized we weren't alone. We both gained another hand to hold in this journey. 

I told her thank you. And now I'm telling every one of you thank you, as well. Thank you for reading this and doing your part to become Lyme aware. Thank you for helping to make a difference. I may be the one writing these posts in an attempt to get some awareness out there, but you are reading them; you are just as responsible for getting the message out there. I'm writing the words, but every time you read them, they are spreading. And I just needed to thank you for that. 

Thanks for working with me. Thanks for helping my heart grow, thanks for helping my story grow, and thanks for helping awareness grow. 

Do it for yourself.

Today I don't want to write my blog. I don't want to think about Lyme. I don't want to talk about Lyme. I don't even want to write about things that aren't Lyme related.

But I'm going to do it. I'm going to do it because I refuse to let a day go by this month without spreading some sort of awareness. Not only for me, but for my Lyme friends, for people who have Lyme that I don't know about, and for the people who have Lyme that they don't even know about yet. 

I don't have any eloquently written words for you today. I don't have anything profound to say, or any wisdom to bestow upon you. And I don't have any stories to tell you about how Lyme has made me a better person. 

Today Lyme sucks. 

And today all I want from you is a promise that you will do everything you can to avoid getting Lyme. Check yourself for ticks. Make sure everyone in your family checks for ticks; help them if they can't do it themselves. It may seem weird, but it's important. 

Don't take it lightly. Yes it's just one bug bite. But it's the tiniest bite with the biggest consequences. And I would never wish these consequences on my worst enemy. 

If you do get a tick, don't panic. But do go to the doctor. Have them remove it for you, and have them test both you and the tick. Don't just rip it out of your skin. It needs to be removed correctly or it will continue to dump the toxins into your body. And don't just throw it away. Get the tick tested as well. A tick has to have Lyme in it's body in order to transmit it into yours. And, contrary to popular belief, it doesn't have to be in your body for 24 hours before it's a concern. It doesn't have to leave a rash. It's better to go to the doctor, get blood work done right away, get antibiotics, and hopefully stop it right there. Just because you get a tick doesn't mean you will end up like me. Act on it quickly and you are twelve steps ahead of those of us who didn't find the tick at all. 

I'm not being over dramatic. I'm not trying to scare you. I'm just trying to make you aware. 

Today my need to spread awareness doesn't just come from the fact that it's Lyme month. It comes from how bad I feel as I sit here writing this. I don't want your sympathy. I don't even want your empathy right now. I just want you to save yourself from feeling this way. 

Do it for me. But more importantly, do it for yourself.

Good days.

Good days are tough.

(Hold on, Leigh...you said GOOD days.)

You're right. I did. 

I appreciate good days. Of course. More than anything. And I take advantage of every second. I am by NO means minimizing a good day. 

But, good days come to an end. I am left with the physical pain of a good day when I lay down at night--every step I take during the day leaves me with random pains when the day is over, every store I go in leaves me totally sensory overloaded by nighttime, and sometimes I'm left with hives. I do my best to try to look at every pain or bad feeling as a reminder of my good day, but sometimes it is hard. 

And, the hardest part of a good day the next day. It's like a good day hangover. When you go along with a few bad days in a row, it feels pretty normal. But, when you stick a good day in there, the high seems extra high, but the low also seems extra low. A good day brings about both extremes. 

Don't get me wrong, I enjoy a good day. I LOVE a good day actually. But it's just another Lyme struggle that you probably have never thought about. It's easy to assume that a good day goes without consequence. A good day automatically seems all good. But it's not. 

But, every good day is one step closer to a time when all of my days will be good days again. And that hope for the future makes it all worth it. 

Good days are tough. But nothing is impossible. 

Gratitude.

If you asked me to describe myself in one word, it would be pretty easy for me to give you an answer...

I am grateful. 

I pride myself on my gratitude. 

I appreciate the little things and I am thankful for them. And, when you have a chronic illness, it's easy to see the negative. But I try my hardest every single day to be grateful. 

Today I had my blood drawn. And, after the lady was done and was bandaging my arm up, I said "thank you." She laughed and said "I love when you come in. You're the only one who says thank you after I stick you with a needle." Now, of course I don't enjoy being stuck with a needle. But I appreciate what she's doing. I appreciate her hard work to do it easily and safely with the least amount of pain for me--I know I'm a hard stick, and I know it's not easy work for her. And I appreciate the chance to have a doctor and to have tests done to help me. 

I am grateful.

That's just one example, but I try my hardest to be thankful every single day. 

As cheesy as it sounds, gratitude really is the attitude. 

A Lyme break.

Today I just don't want to talk about Lyme. Good thing I have a million random things I can tell you! Let's start with 25...

1. I have 14 birthmarks. 

2. I love a highlighted, organized agenda book more than I love most things. 

3. My bedroom used to be painted pink, blue, green, and yellow (one wall each color) and my carpet was purple. You are allowed to be jealous.

4. One of the things I miss the most is playing my clarinet. But I absolutely love sharing my love for it with my private lessons student. 

5. I love Idina Menzel. And I really love Taye Diggs. (And I recently read that they separated...heyyy, Taye!)

6. I used to have a fish named Taye Diggs. 

7. I want an English bulldog named Buddha. 

8. I skipped number 8 when I originally made this list, and I had to add this when I was looking back through before I posted it. 

9. I absolutely love train rides. My favorite way to travel is Amtrak. 

10. I love having a clean room, but I hate cleaning it. 

11. My favorite season is Fall. 

12. I have an obsession with jars. Mason jars, old candle jars, cool shaped glass jars. All of them. 

13. I only use green toothbrushes. 

14. If I could glitter everything in my life, I would.

15. I have a huge sock collection, and it's sorted into two drawers--everyday and holidays. 

16. I really like musicals and soundtracks.

17. If I could give gifts every day of my life, I would. 

18. Mythbusters is my guilty pleasure and my life got a little brighter the day I found it on Netflix. 

19. Sometimes, I try to go through my whole day only buying things that I have coupons for. 

20. I have always wished that I could draw. 

21. When my shampoo and conditioner match, my life seems more together. 

22. I got stung by a furry black caterpillar when I was little. It was much less cute after it stung me. 

23. I love to bake, but I hate washing the million dishes afterwards. If I ever became a professional baker, I would have to hire a baking assistant/dishwasher. 

24. I have a huge phobia of styrofoam. 

25. I'm a pro parallel parker.

Hope you enjoyed this Lyme-free post! Don't worry, if you liked the Lyme posts, they will be back tomorrow. 

Thanks for reading! 

An open letter to Lyme.

Dear Lyme--

I originally was planning on just writing you this letter to tell you how much I dislike you. But, now that I think about it, I guess I should give you a little bit of credit, too. My mom always told me "if you don't have anything nice to say, don't say anything at all." But, since I do mostly despise you, let's start there.

When we first met, however many years ago, I didn't think you were that bad. You're not very attractive. But you do make a lot of money. A LOT of money. And, it's what's on the inside that counts right? Little did I know at the time that you're actually even uglier on the inside! And you definitely aren't someone I'd want to take home to my parents. But, since I didn't really have a choice about giving you a chance, I tried really hard to look at the parts of you that weren't that bad. But, don't get a big head, you're mostly terrible. 

I wouldn't go straight to saying that you ruined my life, but you definitely changed it, and not for the better. You have taken big parts of my cognitive function. You've even gone as far as to leave your lesions on my brain. (You're not cool just because you have lesions, just so you know!) You have thrown so much extra weight at me, and taken any body that I did have before. (I appreciate you trying to give me things, but I do not appreciate what you chose to give me. You can have that back.) You have taken my strength and left me with wimpy muscles, angry nerves, and skin that doesn't even know what to do with itself most days. You have taken my friends. (You did leave me with a few though, so thank you for that!) You have taken away the things I had planned for my life at this point. (And you know how I feel about plans.) And you continue to stomp on me on a daily basis, making it very clear that you are a huge thief, leaving so much destruction in your path. 

But, like I said, I guess I do have to give you a little credit. You have made me realize a lot of things that I probably wouldn't have realized if you weren't in my life. You have made me see the little things, every single day. You have shown me that most people have struggles, and you have helped me recognize that they aren't always things I can see from the outside. You have brought people into my world that I wouldn't have otherwise, and they brighten my life more than I could have ever expected. You have made me fall deeper in love with DIY projects, and you have given me time to do them. And, speaking of time, you have made me appreciate, and use, every second of good time that I have. So, I mean, thank you for those things. Thank you for making me a better person. (But I still mostly hate you.) 

If this letter makes you feel bad about yourself, and if you are now feeling like you want to leave me, I fully support that decision. I have given you a lot, but I am not mad if you want to go away for good; I've already gotten pretty good at living with the things you've taken from me. If you choose to focus on the positives of this letter, I respect your attitude. However, if you really want to earn my full respect, please pack your bags. 

Thank you for hearing me out. (Must be nice to be able to hear without ringing in your ears or nausea from the sounds around you. I wouldn't know, you took that from me, too.) Do with this what you will. But, please know that you have long overstayed your welcome. 

Mostly hate you,

Leigh. 

Success.

When you're living with a chronic illness, it's easy to feel like you're dealing with one failure after another. It's easy to feel like you're nothing but unsuccessful, and even the smallest success seems miles away. 

But, I've learned that looking at things that would just seem like day to day activities before you were sick as accomplishments and successes now is the only way to do it. It doesn't have to outwardly seem like a big deal in order for you to consider it a success. It doesn't have to even be outwardly visible at all. The smallest things can be the biggest successes. 

Some days getting out of bed is all you can do. Success? Yes. 

Some days you can get some house work done or go for a walk. Success? Absolutely. 

And some days just making it through another day seems like the biggest accomplishment of your whole life. And that is no less of a success than passing a test, running a race, or getting a new job. 

Like so many other things with a chronic illness, success is relative. 

Today, I swam for the first time in over two years. I was allowed back in a pool for the first time since I got my first port. I feel like I ran a marathon. The smell of the chlorine was ridiculously overwhelming. My whole body hurts. But it was so exciting! And I definitely feel successful today. 

So, if you're dealing with a chronic illness--Lyme or otherwise--if you're going through anything that makes your life feel tough right now, even if you're just having a bad day...write your own definition of success. 

You can do it. You can succeed. I believe in you. 

The price of normalcy.

Whenever I think of the word "normal," I think about the sandwich lady at my first college. I was in the sandwich line one day with my friend, and the guy in front of us asked her for his sandwich on "normal bread." And her response was "what is normal anyway, honey?!" 

And she was right. What does normal even mean? I guess it depends on your situation; normal is relative. In my case, normal means doing the things that I feel like I would be doing right now if I didn't have Lyme. Of course, I don't exactly know what my life would be like without Lyme, but I do know what my friends do, and what I assume I would be doing as well, if things were different. 

Normal to me is going out with my friends (and by out I mean, like, to chik-fil-a and Target, let's not get crazy.) or going for a walk with my dog. Normal is going a whole day without a nap. Normal is being spontaneous with my decisions, staying out too late, and doing things just for the hell of it. 

Sometimes I can do those things. 

Sometimes I shouldn't, but I do anyway. 

And, on the days when I shouldn't do things, but I do them anyway, I pay for it big time. The days when I go out, I come home in pain. Every single time. The times when I go shopping, and push through the feeling of the lights and smells in the stores, I end up with hives or twitchy muscles when I get home. Sometimes even before I get home. And the days when I work hard to get through a day without a nap, getting up the next day is a bigger struggle than you can probably imagine. 

Think about the hardest thing you've ever done. The day that you pushed your body the hardest and ended up more exhausted than you ever thought possible. That is how I feel when I try to be normal.

And, some days it's worth it. If it means doing something for someone else, it's worth it. If it's an opportunity I won't get again for a long time, or something with people I don't normally get to see, it's worth it. I try my hardest to always put other people first, and I try my hardest to do what they need from me. But sometimes I just can't. 

And that's okay. 

I do find myself getting angry when I can't keep up, but I'm slowly getting better at realizing that the overdraft fee isn't always worth it. 

Sometimes the price to pay for normalcy is just too much. 

My Lyme friends.

I have a lot of supportive people in my life. I have friends from different times in my life, friends from all kinds of different places, and friends who all add different aspects to my life and my story. And that's the best thing in the entire world. Sometimes I sit here and wonder how I got so lucky to have so many of the great people in the world in my life. Like, am I taking awesome people away from the rest of the world? I mean, I'm not going to give them back if I am, but I do sometimes wonder how so many awesome people have made their way into my little part of the world.

I'm seriously so thankful for every single person in my life, and I never want to minimize anything that anyone does for me. But, I have a group of people that I honestly don't think I could get through this Lyme stuff without. My Lyme friends. 

I've been told before that going to Lyme support groups, or having friends who are specifically and only my friends because of Lyme is unhealthy. That it's making me dwell on my problems, because these other people have similar problems. Or that we're all bringing ourselves down by talking about it too much. But that couldn't be more wrong. 

My Lyme friends became my friends because we have Lyme, yes. But we don't only talk about Lyme. Far from it. We talk about anything and everything that you and any of your friends talk about. We don't sit in a little room in a circle and talk about why our lives suck. We actually, in most cases, have never even met in real life. And, it's not a group situation by any means. I'm individually friends with each of them; some of them are also friends with each other, and some aren't. And that's okay! You don't need a support group to feel supported. 

My Lyme friends get it. I can text them in the middle of the night when I feel the infection moving through my body, and chances are they are up for a similar reason. I can text them after a frustrating doctors appointment, and 9 out of 10 times, they will have been told the same thing at some point in their Lyme journey. I can go to them with any Lyme issue and I will never be alone. And they all know it goes both ways--I am always here for them when they need Lyme support, as well. But, I can also text them with boy problems. Baking stories. Pictures of my hair or my new nail polish. Other friend drama. And anything else you can think of. 

They started as friends because of Lyme, but have turned into friends who just happen to have Lyme. And I am so incredibly thankful for that. 

So, Lyme friends, if you are reading this...thank you. Thank you for making my world seem a little less scary. Thank you for sending me advice back when I send you pictures of weird allergic reactions, or gross incision pictures, or questions about random symptoms. Thank you for making me feel not so crazy. Thank you for calming me down when everything feels like it's spiraling out of control. And thank you for bringing me on your journeys, as well. Thank you for sending me pictures of your infected line because you know I will be able to talk you down from your panic. Thank you for telling me about delicious new gluten free recipes. Thank you for trusting me in your hardest moments.

Thank you for being more than just a Lyme support. You are my life support.  

It's rare that I'm thankful for my Lyme...but, I would be really dumb to look past the fact that it brought you to my life. 

And, for that--for you--I am so thankful. 

Apologies.

Apologies are a weird thing when you're sick. It's a constant battle knowing when, and if, I need to apologize. 

Do I need to apologize for being sick? It's not my fault, but I do recognize that it makes things hard sometimes for people around me. Do I need to apologize for having to cancel plans? I don't do it on purpose, and I hate having to do it, but it does happen, and I feel bad about it. Do i need to apologize for complaining? I don't do it often, but sometimes I feel like I am actually going to explode if I don't complain a little. But I do know that it can be annoying. Do I need to apologize for not being the person I'm supposed to be at this point in my life? ...That's the hardest one. 

I do everything I can. I try as hard as I know how to try. But sometimes I feel like I need to put out a public service announcement apologizing to everyone in my world for making things tough. 

And, sometimes, I feel like I need to apologize to myself. For being sick. For being needy. For still living at home. For not being who I thought I would be at this point in my life. 

I know that someday things will come back together and feel okay again. But, for now, I am sorry. 

Sympathy vs. Empathy

If there's one thing I want you to understand about my blog, my story, and my attitude about this whole situation, it's that I don't want sympathy. I do, however, understand and appreciate the importance of empathy. 

(Wait Leigh, there's a difference?

Yes, yes there is.)

Before I was sick, I didn't really understand the difference either. But now, I am definitely aware and it even though it may seem small, it does matter. 

Sympathy means that you feel bad for me. You feel bad that I am sick, and you feel bad for me for all the things I have gone through, the things I can't do, etc. 

I don't want sympathy. I don't need you to feel bad for me; my situation is not all bad. 

Empathy means that you understand my situation or, more importantly, you understand that it's not always easy. You don't feel bad for the fact that things are hard, but you recognize that they are. Empathy can come from the fact that you have also lived with a chronic illness or just from the fact that you have taken the time and effort to work to understand my situation. 

I appreciate empathy. More than you know. 

So, if you are here reading this and feeling bad for me, or for anyone with Lyme...don't. Please don't. Instead, read up on Lyme--either on my blog, in a book, on the internet, or anywhere else you can find the facts.

Sympathy doesn't do anyone any good.

I switched my sympathetic mindset a long time ago, and things have looked a lot brighter ever since. Of course I still have days when I feel bad for myself, but the days that I choose not to feel bad for myself, I get a little closer to being okay again. And I would really appreciate it if you did the same. 

There's never any need for sympathy. There's always a need for empathy and understanding. 

Two years.

Today is two years since I got my first port. 

Two years ago today I thought I was on the quick track to feeling better. It had been a long hard road to get to the point where I could even get a port, and I thought nothing could be as hard as what I had already been through. 

Boy, was I wrong. 

I had no idea what was coming next. I had no way of knowing that my first port would not be my last port. I had no way of knowing that I was going to have to deal with blood clots, kinked lines, and a port that took it upon itself to move around my chest, making it nearly impossible to find it with a needle (or five) some days. I had no idea how sick the medicines were going to make me. I had no idea how many months I would have to have those medicines pumped into my body. I had no idea how hard it was going to be. 

But, at the same time, I had no idea how strong it would make me. I never thought I would be okay with having a needle stuck in my chest every week, but it became my normal very quickly. I never thought I could watch a clot come out through my line and not freak out, but I did it...twice. I never thought I would be comfortable enough with my port scars to walk around with them showing, but I am. I never knew that a little plastic triangle placed in my chest, with a tube going into my heart would change me. But it has. I'm stronger, not only medically but as a person in general, than I ever thought I could be. 

Two years ago I was a different person. 

Today, I am two years stronger. 

So, now what?

This is a question I ask myself a lot. 

I finally got a diagnosis...now what?

I graduated college...now what?

I got my certification...now what?

I got my port out...now what?

And, to be completely honest with you...I have no answer. And that is the scariest feeling in the entire world. I'm a planner (Not like an agenda book, but a person who plans. Though, let's be real, if I could be any inanimate object, I would totally be an agenda book. I'd definitely be one with both monthly and weekly calendars for optimum planning. With color coded tabs!) I love to have my schedule written out in front of me, and I love the feeling of accomplishment when I'm able to check things off because I completed them. 

But, what do you do when you have absolutely no idea what comes next?

People tell me all the time that no one knows what tomorrow brings, and no one can really plan for the future because no one's future is guaranteed. And, while that's true, that's not what I'm talking about. 

When you're sick, the future looks a little different. Not in the sense that it's not guaranteed (because really, who likes to think like that?) but in the sense that when I think future, I think tomorrow. And it scares the hell out of me that I can't even plan for tomorrow. 

Tomorrow I may wake up and not be able to get out of bed. Or, tomorrow I may wake up and be okay for a few hours and get a lot of things done. Tomorrow I may have a reaction to God only knows what and end up with hives, and then sleep my day away from the Benadryl I have to take to get rid of them. Or tomorrow I might feel like I can go outside and take a walk. 

Uncertainty is the scariest part of being sick, in my opinion. 

You can stick me with a million needles. You can give me new medicine after new medicine. You can take what feels like all of my blood on a monthly basis. And I'll stay strong. But ask me about my plans for the future and that strength crumbles a little. 

What do you do when you can't plan your life like everyone else your age seems to be doing? My friends are lining up grad school, or are in grad school. They're getting married and having kids. They're buying houses and building houses. They have great jobs. And here I am. 

All I can plan for is my next doctors appointment. The next time I have to stick myself with a needle. The next surgery. The next test. 

I'm not being pessimistic. I'm being real. Life itself is unpredictable. Lyme is unpredictable. But when you add them together you get a whole mess of fear and a giant rock that has been dropped right in the middle of your path, with seemingly no quick way around it. 

I'm standing at that rock right now. SO ready to climb over it. But my legs don't seem to work. My memory doesn't hold up enough to remember a path around it. And I fall asleep before I can make it over the top. 

So...now what? 

 

Try these instead...

We made it to the end of our 10 days of things not to say to someone with Lyme! I hope you learned something. And, if you read any of those 10 things and thought "I've said that before," I hope that you will think next time, and maybe choose to say something else instead. 

If you're stumped on what to say instead, try something along these lines...

1. "I know you can't go out, want to stay in and watch a movie or something?"--I have a whole list in my head of things that we can do inside, sitting still. And I would love to hang out and do any of those things. Just because I can't go out all the time, it doesn't mean we can't hang out. 

2. "I know you're trying."-- I don't want sympathy. I just want the realization that it's an ongoing battle. A battle that I have every intention of winning. I'm not better yet, but I am trying. You don't have to understand the ins and outs of my fight, but if you can see that I'm doing all I can, that's all I can ask of you. 

3. "Is there anything I can do to help you?"--Chances are, I will say no. But,it doesn't hurt to ask, and it makes me feel like you care enough to try and help. And that means more than you know. 

4. "I'm here to listen if you ever want to talk."--Because, sometimes (most of the time), that's all I need. I know you don't necessarily understand Lyme, but that doesn't mean we can't talk about it. Maybe you'll learn something, too. I am not going to shove my problems down your throat all of the time, but every now and then it's nice to be able to talk about it. 

5. "I read your blog." --This is, without a doubt, the greatest thing you could say to me. I don't write these things to make you feel bad for me. I don't write them to make you feel bad for the things you've said to me, or anyone else in your life with Lyme, in the past. And I don't write them to bring attention to myself. I write them to bring attention to Lyme. Every one of you that reads my blog is one more person who knows Lyme exists. Every person who knows Lyme exists is one more person who is less likely to get it. And if I can contribute to that awareness, I'm doing what I set out to do. So, as simple as it sounds, "I read your blog" it means more than pretty much anything else. 

Of course, like I've said before, we never have to talk about Lyme at all. There is so much more that we can talk about. (I am a big fan of puppies, DIY projects, baking, etc.) But, I thought I would give you a few suggestions if you do want to say something about my Lyme. I didn't want to tell you 10 things not to say without helping you think of what to say instead. 

Thanks for still being on this month long daily blogging journey with me! If you've been reading all month, I appreciate you. If you're reading this as the first time you've read my blog, I appreciate you. And, if this is the last post you choose to read, I still appreciate you.

A little awareness is better than none. 

I appreciate all of it. 

"You're STILL sick?!"

Yes. I am still sick. 

I'm still taking too much medicine. I'm still going to the doctor more than any human being should. I'm still a frequent flyer to the pharmacy.  

It doesn't make any sense to me either. I know it's hard to believe that I'm still sick after what seems like a bajillion years. And I know by looking at me it doesn't seem like I'm sick, most days. 

But, I am. 

But you know what? I'm also still hopeful. I'm still optimistic. I'm still trying with everything I have. I'm still fighting like hell. 

And, when it comes down it, that's what I choose to look at. Of course it makes me sad that I'm still sick. But, what makes me even more sad is the fact that not everyone can see past my Lyme. 

I'm Leigh first; Lyme comes second. And, if you have taken nothing else from the last ten days, I hope you can walk away today with that in mind. 

Yes, I'm still sick.

But, more importantly, I'm still me. 

"I wish I got pain medicine..."

First of all, let me clear something up...I don't have pain medicine. I take upwards of twenty pills a day, and not one of them is a pain pill. 

But, if I did have pain meds, it would be for a reason. Just because I'm sick doesn't mean I get pain meds handed to me. That's not how it works. 

And, along the same lines, I've heard "you just want the medicine" as a reason that I go to so many doctors. And, you know what? You're right. I do want the medicine. I want the medicine that fights against the bacteria that is taking over my body. I want the medicine that lowers the pressure in my brain. I want the medicine that helps with the anxiety that comes back with a vengeance every time I have a relapse of a co-infection. I want the medicine that works it's way into my brain in an attempt to help my cognitive symptoms. I want the medicine that helps my heart beat properly. And I want the medicine that helps me sleep when my body and mind won't slow down enough on their own. 

And I, too, wish I got pain meds. Not because I just want the medicine...but because I don't want the pain. 

There's a very big difference. 

"Do you even want to get better?"

Short answer--there is absolutely nothing I want more. 

Long answer--I let them surgically implant a device in my chest that ran a tube directly into my heart...twice. I spent 4 days a week with a needle in my chest day and night, for almost two years. My mom had to stick the biggest needle ever in my hip/butt once a week for months, and the medicine that was pushed into my body from that needle was as thick as peanut butter, but we kept doing it even though it was miserable for both of us. I have had more dye pushed into my veins and have had more trips into CT and MRI machines than one person should probably have in a lifetime. (I don't know why I don't glow crazy colors or do something else equally as awesome yet). I have taken more medicines than I even knew existed to help parts of my body that I didn't even know I had. And I keep taking those medicines even though they make me feel significantly worse for a while. I go and sit through doctors appointment after doctors appointment with no answers, because I am eternally hopeful that maybe the next one will be the one that makes a difference. 

And trust me, I never would have let any of that happen if I didn't want, with everything in me, to get better. 

So yes, I want to get better. 

There is absolutely nothing I want more. 

"You're just depressed."

This is a touchy one. 

I am a happy person. I pride myself on the ability to see the little things, and to find sincere joy in those little things. I do my best to wake up every morning and see each day as a new opportunity, and I go to bed every night thankful for the day that I just had because, good or bad, I had another day. I laugh. A lot. To the point sometimes where I'm still laughing hours later at something that happened. I can, without any hesitation, say I love my life. 

But, Lyme is ugly. It's mean. It's vicious, actually. And it has big heavy arms that try and pull you down with it. And sometimes those arms are too strong; sometimes they win. And on those days, you're right...I am depressed. But, by no means is that an every day thing. I think anyone who experiences any kind of chronic illness or chronic pain would be lying if they told you they didn't feel depressed sometimes. 

But, what I am trying to get across with this post is one of those chicken or egg situations. Am I depressed because I'm sick? Or am I sick because I'm depressed? It's a fine line, and I understand why maybe it seems like the latter. 

But that's not the case. 

Of course I have bad days. Of course some days Lyme is stronger than me. 

But, I am sick because I was bitten by a tick. 

And that's all there is to it. 

"Maybe if you just went to the gym..."

This one bothers me for a couple reasons...

1. Unless you are a magical Lyme healer, do you really know what will help me? (And if you are a magical Lyme healer, why have you not healed me yet?! Get on it!) I appreciate you trying, but I would appreciate it more if you didn't pretend to know what I need. 

2. You have no idea what my doctor has told me. You don't know if I'm even allowed to exercise. Until you ask me my limitations, please do not assume that I'm just lazy and choosing not to go to the gym for lazy reasons. It's not a lack of motivation. Or a lack of caring about my body. It's a sincere lack of ability at this point, and it doesn't help me to hear you tell me what to do. 

3. There are many other ways to exercise--both my body and my mind. A walk is a huge deal when my body hurts, but I do it when I can. I don't need to go go the gym to be active (and active is a relative term). Going to the gym isn't the only option. 

And, above all, it's never considerate or respectful to tell someone what to do. This is no different. I'm sick, not incapable of thinking on my own. I know the importance of exercise, and I know that it's a great thing for a lot of people. And maybe one day it will be a great thing for me, too.

But, for now, please don't tell me what you think I need to do. I don't do it to you, please respect me enough not to do it to me, either. 

"But you don't look sick..."

You know the phrase "don't judge a book by it's cover?" That applies here. 

Just because I am up and moving around most days, it doesn't mean I'm not hurting all the way down to my bones. Just because I am outside, it doesn't mean the sun doesn't feel like it's actually burning my skin off. Just because I'm dressed nicely, it doesn't mean every seam in my clothes doesn't feel like a million needles stabbing my skin, scraping across my body every time I move and my clothes shift. Just because I'm smiling, it doesn't mean I'm not fighting the biggest battle of my life. 

And, really though...what does sick look like? 

For almost two years, I had a port in my chest. But most of the time, it was covered up. Does that mean I didn't have it, just because you couldn't see it? I had it--it was there. 

As I sit here right now writing this, I feel like there are a million bugs crawling on my skin. You can't see that. If you looked at me right now, you would have no idea that I'm gritting my teeth and hoping with everything that I have that the itchy, painful feeling will go away before I rip my skin off. But I feel it--it's there. 

But why do you need to see it? Does it make it any more real just because it's visible? Does it, at the same time, make it any less painful or real just because you can't see it?

It shouldn't. 

"Well, at least it's not cancer..."

Yesterday's topic was the one that was the hardest for me--the one that makes me feel most like "the sick girl." Today's topic is the one that makes me the most angry. And, unfortunately, it is one of the most common things I hear when people find out I have Lyme.

"Well, at least it's not cancer..."

Now, you're probably thinking that the reason this particular response bothers me is because I feel like my disease is just as bad as cancer, or because I feel like people are minimizing my struggles by comparing them to cancer. And, while those things do cross my mind in the midst of my anger, that's not the biggest issue I have here. 

You're right...at least it's not cancer. Cancer is a terrible, ugly, life-altering disease. Absolutely. 100%. But, what does that have to do with me? What does cancer have to do with Lyme? And, subsequently, what does Lyme have to do with cancer? 

If you answered "nothing," you are correct. 

Cancer has nothing to do with Lyme. Cancer has nothing to do with Lupus. Cancer has nothing to do with Fibromyalgia. Cancer has nothing to do with the common cold. Cancer has nothing to do with anything but cancer. 

And, while I don't have cancer, I feel like I can probably speak for someone who does in saying that they don't want their situation compared to mine or anyone else's, either. Why is cancer the go-to indicator of a hard time? If I did have cancer, I wouldn't want someone who had another disease, or any other life struggle in general, to be put down just because they don't have the same thing as me. Their battle is their battle. My battle is my battle. Your battle is your battle. There is nothing to compare. 

So, next time you hear that someone in your life has a disease, or any kind of challenge that they're having to face, think before you speak. Don't compare them to anyone else.

I wouldn't tell you that you are lucky you have what you have instead of what I have. 

Please don't do it to me either. 

"Are you ever going to get a job?"

This one is, by far, the hardest for me. It's a weird place to be --I've graduated college, I have a national certification in my field...and when people ask me "oh what are you doing these days" or "where are you working," I am left without an answer, every single time. I absolutely understand how that doesn't make sense to anyone looking in from the outside. Why would I go to college, work so hard to get through college, study my butt off for my certification, receive my certification, and then spend my days not doing what I worked so hard for? 

I know it crosses people's minds...

"She's just lazy." ...false. 

"Maybe she couldn't find a job." ...nope. 

"Maybe she doesn't know what she wants to do with her life." ...I know exactly what I want to do with my life. I've worked long and hard for it, and it's no longer just what I want to do with my life...it's what I will do with my life. 

I fully believe in giving 100% of myself to everything that I do. I did it through school, and I do it in every aspect of my life. Working is no different. If I have a job, I'm going to give 100% of myself to it. But, right now, I don't have 100% to give. 

If I could have a job, and if I could give 100% of myself to that job, you better believe I would have one. But, like I said in my "you're so lucky you can just lay around all day" post, (have you read it? If not, what are you waiting for? Get to it!) I am working hard. Not working like you are working, most likely. Not working like I planned on working at this point in my life. But, I am working. My life isn't like yours, my work isn't like your work. But, one day I will have the kind of job I expected to have at this point in my life. And that will be the best day ever. But, for now, I'm going to give as much of my 100% as I can muster towards finding answers and, ultimately, finding remission. 

Some people take off time to travel the world. Some people take off time to have a family. Some people take off time to find themselves. I am taking this time to find my 100%. One pill at a time. One injection at a time. One doctors appointment at a time. One good day at a time. One bad day at a time. It's all part of my 100%, and I will get it back. 

It's not the answer people want to hear during our chat in the checkout line when they ask what I'm doing with my life--and to be completely honest, I haven't mastered an answer, yet--but, this is the truth. It's my truth. And it will all work out in the end. 

"My dog had Lyme once..."

This is a good one. Usually followed up by "but he's fine now." or the occasional "and now he's dead." Both of which are equally comforting. 

Before we go any further, I'm very sorry to hear about your dog! Truly, I am. I wouldn't wish this disease on anyone, including your dog. My dog actually has Lyme, too. We found out about a year ago now, I guess. I secretly think he just wanted to be more like me. 

But, while I am sorry about your dog, it doesn't make me feel any better. My dog has had a cold before, too. But, I try and avoid going around telling people who have colds that my dog shares their struggle. It doesn't help them, and it would make me look a little silly. 

You know what else is frustrating about the whole dog Lyme situation? My dog got a positive blood test right away. Literally within minutes of having his blood taken. The vet took the blood, tested it right there, and prescribed him pain medicine. Now, if you read my Lyme story on day 1 of this month, you would have an understanding of the struggle that comes along with getting a Lyme diagnosis and treatment for humans. (And if you haven't read it, go read it right now! Ready, go!) But not for dogs! I had to hold myself back from asking the vet if I could share Hershey's pain pills. 

So, even though this one is a little lighter and less hurtful than the others, it's still something you should try to avoid. If you can't relate in any other way, that's fine! But maybe ask a question instead. Or we don't even have to talk about Lyme! Don't ever feel like you have to say something to me, or any of your other Lymie friends/family about Lyme. I would much rather talk about just about anything other than your dog having Lyme. 

"You're so lucky you can just lay around all day..."

First of all, let me clear something up...very few of my days involve laying around all day. And, just like you I'm sure, on the days that I can do that, I take full advantage of it. But, on the days when you assume that I'm doing nothing, I can guarantee you that I am doing a lot more than you realize. Sure, my days aren't like your days. I don't get up in the morning and go to work. I don't come home after work and clean and make dinner. I don't do the things you do, true. But, I far from lay around all day. I have some weeks that are filled with multiple doctors appointments, tests, etc. I have days when I am trapped by the side effects of new medicines, or symptom filled days when I'm not much use, and those days usually do involve a lot of sleeping. But, those days are not just lazy--I am working every second that I'm breathing to fight back against the bacteria that's eating me alive. When you were little, didn't your mom tell you when you were sick that you needed to rest your body to feel better? That's what I'm doing. I don't get dressed in the morning, go to an office or a classroom, and live my days out the way you do. But I guarantee I am working. 

So, before you tell someone with Lyme that they are so lucky that they get to lay around all day, stop and think. If we could live the life right now that you are, we would switch with you in a heartbeat. 

No need for sympathy, but there is always a need for understanding. 

10 things not to say to someone with Lyme...

If you asked me what about Lyme awareness is the most important--the one thing that I want you to walk away from this month having learned from me--I wouldn't even have to think twice. I think the most important thing when it comes to awareness about any cause, any situation, any person, is compassion. I don't expect you to understand right away. Of course. That would be an unreasonable request. But, if you can learn one thing, it's this list of 10 things that you should try and avoid when talking to someone with Lyme. 

1. "You're SO lucky you can just lay around all day!"

2. "My dog had Lyme once."

3. "Are you ever going to get a job?"

4. "Well at least it's not cancer!"

5. "But you don't look sick..."

6. "Maybe if you just went to the gym..."

7. "You're just depressed."

8. "Do you even want to get better?"

9. "I wish I got pain medicine!" 

10. "You're STILL sick?!"

I will take the next 10 days to go into why each of these things hurts, as well as things to maybe say instead. But, for now, I'll just leave you with the list. 

Just remember, we are always willing to explain. We are always willing to answer your questions--about this disease, about our lives, about anything you don't understand. But jumping to conclusions and making assumptions does no one any good. 

No one is perfect, but compassion speaks volumes. 

Happy Lyme Awareness Month!

Last year, I took the approach of making a list of 31 reasons that I was thankful for my Lyme. But, this year I have a blog! So, if you’re ready, let’s go on a month long daily-blogging journey together! 

(Hi, I’m Leigh, and I’ll be your tour guide this month…)

Let’s start with my Lyme story. I've never put the whole thing out there at one time before, I don’t think! A lot of you probably know bits and pieces, but maybe getting it all out there will put those pieces together into something that makes a little more sense. Actually, probably not...I live it and it doesn't even make sense to me most days, but we’ll see.

Okay, so to get to the beginning of this story, let’s travel back to my 9^th grade year, 2004. (Please keep your hands and feet inside the tour vehicle at all times.) I had been having headaches for a few years prior, but it was during my first year of high school that I started getting migraines. Lyme that has been dormant in your body (in people who don’t remember having a tick bite, like me) can sometimes be brought out by traumatic events, either physical or emotional—and, 2004 was the year that both of my grandparents died. So, looking back now, we believe this may have been the beginning of my Lyme journey.

Fast-forward to 2007/2008. After two major leg surgeries within less than a year of each other, my headaches started getting worse, and I began having other weird symptoms. I started getting dizzy in stores, and smells and sounds really started to bother me. The fact that these symptoms started after huge physical trauma to my body further supports the fact that Lyme is exacerbated by trauma. Super.

So, I graduated high school in 2008, and went off to college. My headaches were getting worse and worse and I was starting to feel like I was never going to live a life without pain again. (Dramatic, at the time, probably. True to this day, absolutely.) So, I decided to come home from college after a year and a half. I was considering a change in majors at the time anyway, so I came home and decided to try and figure out my headaches before I set off on my new journey with a new major. Long story short, didn’t figure out the headaches. But, in the process I was told that it could be: Rheumatoid Arthritis, Lupus, Fibromyalgia, Lymphoma, and everything in between…oh, and the reoccurring favorite—“It’s all in your head.”

The summer of 2010, I turned 20. On my 20^th birthday, I got a sharp pain in my left eye and the peripheral vision in that eye went dark. I went to the eye doctor, had tests done that confirmed that I had a straight visual field cut down the middle of my field of vision. They said it was probably just a virus that set it off, since they couldn’t find anything else wrong, but they sent me to the ER for an MRI. This MRI found lesions in my brain. The ER doctor said, without a doubt, it’s MS, and sent me on my way to see my neurologist. Of course, it wasn’t MS. The lesions on my brain were indicative of neurological Lyme, but we didn’t know that yet.

I made it through one semester at my new school before things spiraled out of control. I was sicker than I had ever been, and I needed to figure it out. So, after a semester, I medically withdrew and came home again. We needed to crack down on things and get to the bottom of what was wrong. I found a doctor who was well known for treating Lyme, since we had kind of narrowed things down to Lyme at this point. While I was away for the previous semester, I received a positive test for Ehrlichiosis, another tick-borne disease (co-infection of Lyme). So, we decided to go the Lyme route with this new doctor and see what we could figure out. Luckily, this new doctor was absolutely incredible, and on my first appointment with him he told me “you are not crazy. I believe you. And we are going to figure this out.” For the first time, I felt like I was going to get the help I needed and that feeling is irreplaceable. So, he started me on antibiotics right away for the co-infection, and said that while we ran tests to try and get my positive Lyme test, those antibiotics would start fighting against everything that was going on in my body.

Then, one day I went for an appointment and there was a sign on the door saying that my doctors practice was closed. Wait, excuse me, what?! This man finally believed in me, was fighting for me, ultimately saved my life…and he was gone? Cue world crashing down around me. Turns out, he had to shut down his practice because he was cracked down on for treating Lyme. Yep, you read that correctly. Doctors are only supposed to treat Lyme for 28 days with antibiotics, and then their medical license is at the mercy of the CDC if they treat past that. You know, because chronic Lyme doesn’t exist. That’s why you’ve been reading about my long journey for who knows how long now. Anyway, where were we? Oh yes…no doctor, world crashing down. So, I set out to find a new doctor. Found one who was treating some other people in my area who have Lyme—perfect! Got an appointment with him, and found out that he wouldn’t treat me without a positive Lyme test. Easy, right? Just take some more blood, see the positive test, move forward with treatment. Wrong. The problem with Lyme (well, there are many problems with Lyme, but this is a big one) is that it is a master hide-and-seek player—emphasis on the hide. You could take my blood at 1:00pm one day, and have it come back positive for Lyme. Take my blood again at 1:05pm the same day, same test, same everything…negative for Lyme. The bacteria are fast moving, pro at hiding, and really god damn annoying. So, he took lots of blood, ran lots of tests…nothing. He kept treating me for the co-infection that I was already being treated for, as well as Babesiosis, a new one that he found with some of the blood work he did. But, no treatment for Lyme until I had a positive blood test—an official diagnosis.

I went back to school after a semester off, for my senior year. I had been taking classes online and at the community college while I was home, so I was still on track to graduate on time. I was so sick, on so many medications, and still dying for more answers, but I was going to finish school if it was the last thing I did. I worked with disability services to receive accommodations for my absences, and I had incredible professors who wanted nothing more than to see me succeed. I drove the three hours home almost every Friday to see the doctor, run more tests, get more medicine, sleep in my own bed for a couple nights, and then I drove back to school every Monday morning to push through another week with new medications, new side effects, and a new drive to get through to graduation.

Then, my doctor suggested that we send my blood to a lab across the country that would hopefully give us some cut and dry answers. He was tired of treating around the Lyme when he knew I had it, he saw me declining, and he knew something needed to be done. The test was ridiculously expensive, it took weeks for the results to come back, but it needed to be done and it needed to be done now. So, he took the blood, sent it away, and I went back to school.

Then, one glorious day in March of 2012, I received my official Lyme diagnosis. After years of fighting to get those words, I couldn’t control the tears when I found out I could finally move forward with the treatment that had been dangling in front of my face for so long, just out of my reach. So, he put me on antibiotics, and we decided right then and there that I needed to schedule surgery to have a port put in my chest for IV antibiotic treatment. I went back to school, somehow made it through the next few months, and graduated in May of 2012! Came home, got my port on May 15^th (three days after graduation—happy graduation to me!), and started IV treatment. Finally!

Since you’ve been reading forever at this point, let’s fast forward to today. Are you still with me? Do you know what day it is? Do you need a stretch break? I’ll give you thirty seconds; take a lap around the room.

Back? Okay, good.

At this point, I am still in treatment. I did 15 months of IV treatment through two different ports, and I actually just had my second port removed last week. I am port-less for the first time in two years, and it is very strange! I am at the point now where antibiotics aren’t really an option. We’ve done what we can with them, so we are trying alternative therapies now. We’re also dealing with the fact that my doctor has been cracked down on by the CDC, and he has had to change his treatment policies and procedures, which means my treatment plan has been changed, as well. I recently had a relapse in one of my co-infections, so that is being treated right now, too, while we figure out where to go next.

It’s been a long, messy road. And, it’s nowhere close to over. But, I’m nothing if not determined. The people in my life who have been there through all of this are incredible, and there’s nothing we can’t do.

If you are still reading this—thank you! Thank you for taking the time to get this deeper look into my Lyme life. It’s not something I throw out there every day in great detail…but, if I can’t share it during Lyme awareness month, when can I share it? Thank you, you are the best. Thank you for taking this journey with me. Come back tomorrow for day 2!

(You may now unfasten your safety belts and exit to your right.)