The Powers of a Lyme Warrior

So here's a confession: I'm a bit of a nerd... I thought I was getting sick of all the super hero movies, but then I got hooked on a show on the CW called "Arrow" and then of course you can't watch "Arrow" and not watch "The Flash" because of course they have to interconnect the shows to get me even more hooked! But yes I am a nerd. I accepted it it long before my diagnosis even before the tick bite. I'm a nerd. And being sick a lot gives me time to be a nerd. The End.

Well actually, it's not the end. Ya see I've tried to show how Lyme takes things from it's host, but also show that it is still possible to try and find the silver lining in life. I always want to try and find something good, even when Lyme is kicking my butt. Even when I feel all alone with my disease. Even when I've painted on that fake smile because I know people don't understand what I'm going through... I think everyone with Lyme does that.

With me trying to find the silver lining in life, finding the tiny miracles, the tender mercies in everything is sometimes hard, it's a challenge, and I don't mean to say I'm anywhere near level-expert at doing it. And because I'm not super good at it all the time, I use my imagination a lot. My constant go to day dream, is seeing everyone understand a little bit more what I'm going through, and I know that won't happen until the CDC accepts Lyme as a real disease and there starts to be real funding for Lyme Research. But  I've also been having other big imagination adventures.

We see all these super heros now days, whether it's Marvel or DC, or My Little Pony, or maybe Little Enstines, I don't know. But I've been watching all these super hero shows and movies and sometimes I wonder... How come they never get sick? Like what if Batman gets bit by a tick and ignores it for 2+ years, starts getting sick and finds out he has Lyme?  What would Batman do? 

I mean, most of these Super Heros are part human, at least... I mean, what if Captain America got bit before he had his muscle upgrade? And all this stress of saving the world is just now making the symptoms kick in?

Is it weird that I think this way? It's not so much like "What would The Flash do?" But it's more, how would they handle it? Would they use their powers/strengths/skills to help find a cure? Or would the CDC still say, "Ehh we think Spiderman is faking it, just like everyone else! Go get some psychiatric help ya freak!"

Anyways I've been thinking a lot on the super hero idea, and I realized that kids look up to those super heroes. It is so cool that they always come out not just the winner in their fight for truth, freedom, or whatever, but they get to beat down their opposition. Like literally beat down! And I think about how that is comfort to those kids that watch those shows, maybe more of a subconscious comfort, that they can feel like they can do anything, at least that is how I feel when I watch. But as I watch them, I think, man, Lex Luther just doesn't give up! He always comes back to ruin Superman's life.

And then I think about how Lyme Disease is like that to me. Like that annoying bad guy that keeps coming up with annoying ways to destroy me. And when I think about it that way, I realize that my powers aren't anything special at first, some new drugs prescribed by the doctor, 14 hour sleeping sessions, and 2 or 3 naps during the day. But I also think, how every time a new symptom appears its like I have to figure out mentally and emotionally (as well as physically) how to not only fight this new symptom off,  but how to stay strong until this one passes. And I realize with that thinking, subconsciously I gain more stamina and strength each time I fight off this new symptom. And sometimes the road is long to getting it taken care of.

A lot of the time it feels like Lyme is winning more than me. But I think I have realized that as I get put into this sucky situation, I may not save the world but I save myself, overtime I decide I don't want to give in, even though sometimes it sounds really nice. And that is when I realize any lyme warrior's super power is not giving up, and not giving in. Like I feel every super hero says at one point or another "I have't got a choice." Batman has to fight Joker. Nobody else can. I have to fight my Lyme, I don't have a choice, nobody else can. And giving up isn't an option there is no choice but to fight.

I don't really know where the rest of this is going, I just came up with this analogy off the top of my head to make sense of why I have been binge watching Arrow and The Flash on Netflix, and rematching all the marvel movies. And now I realize it's because I feel like I can relate in a much much much more smaller and menial way. And because, lets be honest, there is no such thing as an ugly actor picked to be a super hero am I right?

But in all seriousness, as I fight the fight that is going on inside me, I can see the strengths come, and also where my weaknesses are as well. The Lyme Warrior should be a name given to anyone fighting Lyme Disease because they are their own super hero. They are saving the most important thing they can, the only thing that is really truly theirs... Themselves. Any lyme warrior knows this deep down, or eventually figures it out. I'm just now figuring it out for myself.

-The Lyme Warrior

Another ER trip opens my eyes

Saturday night I started feeling sick, more so than usual... I was told that you get a chronic sore throat once you start getting in the ending stages of killing all the Lyme in your body. I wake up every morning with a sore throat, I have these medicated lollipops that I can suck on that help. But Saturday night it wouldn't go away. And I started to feel achy, I couldn't focus on anything that was being said as I sat and ate dinner with some of my co-workers.

The next day, Sunday, I was in bed, wondering if my inability to sallow from the pain was more than just the lyme. I had some left over amoxicillin from when I was talking 2,000 Mg every day for a couple months, back when I was doing antibiotic treatment, so I took a few to try and feel better, but I felt worse overtime I took them.

That night I was at my worst, I always think that pain and I have come to a similar understanding of each other after the past year or so. But my throat felt closed off it was so painful. I hadn't been eating or drinking in over 24 hours when around 8pm that night I passed out, I started to not seeing what was infront of me, and then my mom was talking to me and I couldn't hear her... next thing I new I was on the floor and hearing my dad talking to 911 on the phone.

After the ambulance came and checked me out I was on my way to the ER, now I wasn't only fighting a super sore throat and body aches and a fever that had been rising and falling all day, but I was having a panic attack over going back to the ER (if you want to understand about my past fears of the ER click here).

The frustration of educating nurses and Dr's over my disease is indescribable as I am lying there with my throat nearly closed off and sweating like a sinner in church out of panic and the fever that had spiked again. But after educating my nurses and a positive strep test I was told I couldn't leave until I drained 3 bags of IV fluids and antibiotics.

Me in the ER

As I was laying there in the ER sucking up IV juice from a bag I started to think about my disease, and how far I had come, where as how far the world had come. I was still having to explain to nurses and Dr's about my disease. I still wasn't getting covered for medicines that I needed from my insurance, infant recently I was being denied some very serious ones that I needed, and had been taking for over 6 months.

I was thinking about all of this and getting more and more frustrated with the Government. I didn't want me, or any one else to have to suffer because of either the CDC's pride, or stupidity, or maybe both. I became more and more angry as I was lying there in the ER. I had to go to the ER to find out if I had strep because I wasn't sure if it was Lyme or not, because there is hardly any funding for testing of the most vector bourn illness in the United States.

I remember the last time I was in the ER I was terrified and frustrated because I didn't understand what was happening to me, and why I was being put in the padded cell in the "special room" in the ER. And now I felt terrified and frustrated because I didn't understand why people couldn't just at least know about my disease. And know how to if not protect themselves, at least sympathize for those who have it. I know I can't expect empathy from people, because they have no clue how I feel, what it's all like. But I think there are also people who can't even have sympathy for those with Lyme because they don't even know what it is.

In my post on fear I said that the greatest reason for fear is the lack of understanding. And I still believe that is true. But I have another fear, and it's fear of and for our medical system. I have a really good LLMD but one scary stat that I can't seem to shake is that the average person that is bit by a tick takes 2 years to diagnose correctly with Lyme...

Imagine if you had Cancer and it took 2 years to diagnose your illness because Docters didn't understand what it was because the government said cancer didn't really exist... I mean I can't tell if that sounds like communism or just the plain old dark ages!

Either way it is wrong, and I shouldn't have to go to the ER for help and educate my doctors and nurses on my illness. And the only ones to blame for that are the CDC and the government. And it needs to end. Now!

-The Lyme Warrior

How to Recover from a Mission

These are from conversations and from personal experience, I don't wish to speak for the whole church or for every early return missionary. But my personal belief is that we go through things so that we can help others along the way, and that is my reason and hope that pushes me to write this.

They say being a missionary is the best years of your life, if that is true, then what happens if you have to end early, suddenly. It all comes to an abrupt halt, sooner than planned. Well, from my experience, and from seeing others it ends a few ways, sometimes depression, sometimes it gets to the point where they just leave the church... there is so many negative reactions that can happen to this negative big event that ruins the best years of your life, to that point in your life anyway. So here are a few ways I have found to help one "move on" but in a positive way.

1) Allow yourself to be sad.

It is ok to be sad, to mourn the time that is lost and gone now. Don't feel like you have to come home and just get over it and put it all behind you. When I came home after an honorable medical release with depression and anxiety I was pushed into even more depression. But the society we live in, the LDS Community, thinks that we just have to push it behind us. Pretend that it is ok. Move on. Square your shoulders and fake it until you make it. I don't know anywhere in the scriptures where it says that. In fact one of my favorite scriptures talks about how even the most perfect person to ever walk the earth "wept"... That's right, even Jesus Christ cried (John 11:35).

In my personal opinion, if it is ok for my Savior to cry, it is ok for me, an imperfect person to cry, to feel sad, and to mourn the loss of my time on the mission. In mourning for Christ being crucified the earth trembled and shook, and there was 3 days of darkness covering the whole earth (3 Nephi 8). If we can get past the very false thoughts and beliefs that we need to suck it up, and just be happy all the time, then we can begin to heal, and move on, in our own time. Allow yourself time to mourn the loss. It is ok. But you need to give yourself permission to do it.

2) Don't self shame.

The majority of people that see you home early won't give it more than a second thought. However, there is a culture in the LDS Community to self shame. To talk yourself down. And to make yourself suffer even more than you already are. You cannot begin to heal and move on until you cut yourself some slack and stop shaming yourself. There is a big difference between guilt and shame. And sometimes guilt gets a lot of the credit, when we are actually feeling shame. Guilt is something that we are... If I still a candy bar I am guilty. I feel guilt because I did something wrong. A lot of the time shame comes from what we think we are. If I hit my brother I will have some guilt because I probably shouldn't punch him in the face. But I will feel mostly shame, because I feel bad and the fact that I don't want to face him and say sorry tells me that I am ashamed.

If I come home early from a mission and I have an honorable release I can tell myself that I feel guilty, but why? What is the reason? I didn't do anything wrong, I developed a sudden onset of depression and bipolar symptoms that after 6 months over took my work in the field... So why did I feel guilty? Once again, guilt was taking the credit of shame. I put myself down, I called myself a piece of crap loser every time I got a letter from a past companion. I told myself I screwed up and was not a real missionary when I would go to a friends homecoming. I told myself everyone was judging me when I would go to church. I did the shaming. Nobody else. And why?

Because I grew up in the LDS Community, where if you don't go out on your mission now at age 18 as a boy, you are probably not going out because you have a sin. Or, if someone is open about their depression and anxiety at the pulpit on fast Sunday they are doing it for attention. Or if a man gets a temple divorce he must have been cheating on his wife. So I wonder where I got it in my head that everyone would was looking at me as an "early return missionary", even if they weren't?

I told myself that people were judging me because 1) Sister Missionaries don't have to go out, so they can get an honorable release from just about anything. So therefore people thought I couldn't hack it. That the mission was too hard on me so I was a wussy and gave up, I told myself that was what people thought, and that I deserved to have them feel that way towards me because I came home early. 2) I judged other sisters who went home early, so therefore I had to be judged the same way. Karma.

I told myself I deserved to feel this way. It was karma all coming back because of how I had thought about some other poor early return missionary. It was the Lord humbling me, so I had to take it and let those people think those things about me...Here's the problem, if it worked that way, then everyone else would eventually have every single bad thing happen to them, that they thought about someone else. I should have been pulled over 5 times today, because I wished 5 other people would be pulled over for driving fast past me. But I didn't. Because that is NOT how God works.

3) Don't Wallow.

Go to school. Get out of your town. Leave the past behind. Once you have allowed yourself the time to mourn, and to be sad, and stopped shaming yourself, MOVE ON! I know some people who can't get past their mission because don't go and do other things. This was super hard for me, after serving 1 year I came home, but then was diagnosed with Lyme Disease, a super serious a debilitating illness, that has taken away 2+ years of my life! Once I got over the sadness and stopped shaming myself I was still too sick to move on, to go to school, to figure out my life, even to date! So what did I do? I wallowed, I couldn't do what I wanted so I fell back into the cycle of self shaming. DO NOT WALLOW!

4) Remember the good times.

Like any sad situation, whether the loss of a family pet, losing friendships, leaving a mission, it is ok to remember the good times, and to even see the growth from the hard times. That has been the biggest blessing for me. I may not be able to pin point exact blessings, but I can see my growth that has come from coming home early. I once heard a friend say that they learned more coming home early than anything they would have learned staying out on their mission. And where I don't think that is very true for myself, I am able to see my growth. And I am able to understand that it's ok to see those things, and to look back. And if you feel like you are in a place where you don't think you will ever find good, or find how you have grown from a situation, go ahead and go back and repeat these steps, you might be skipping ahead.

Again, these are just from personal experience as well as conversations of others who have gone through, to some extent, what I have. I don't wish to speak for every early return missionary, but I think and hope, that some of my experiences may have helped others.


-The Lyme Warrior

Here's what no one tells you about having both anxiety and depression

Found this on Buzzfeed! What an awesome article, with so much truth to it!

http://www.buzzfeed.com/annaborges/20-feelings-that-sum-up-having-both-depression-and-anxiety#.drYBqze6x

-The Lyme Warrior

Low Dose Immunizations Part 2

So I got my first shot Oct 2nd, it was weird. It was like a TB shot. They stuck the needle right under my skin and it bubbled up like the TB shot does. How ever, the needle was tiny, like a diabetic needle. It stings like a bee sting when they send the liquid under your skin. But other than that I don't think it is that bad... And I hate needles and shots, this is the girl who ran and hid when her mom took her to get a flu shot when she was 14! So this shot wasn't so bad.

They dilute the stuff they shoot you up with so that it doesn't over whelp your system all at once. And I noticed towards day 9 (after the first shot) that I didn't need to nap anymore, same with days 10, 11, 12, 13 and 14! I can't tell you the last time I skipped a nap! It was so freeing! And I slept all night! I hadn't done that in forever! And it was 4 nights in a row. I was feeling so good!

Then this week Oct 12th, I went in for the 2 week "booster" is what they call it. They make it more potent, I'm not sure if that is the right word, but they make it less diluted. Anyways that was Monday, and they say you know it works if you get a little sick, but then it will start to get better. Well, I am super super sick! I am not sleeping at night again, I ache and I am so tired! Plus, after being off of antibiotics for a month now, when I was on them for well over a year, I am starting to get normal sick. I think I have a sinus infection too. So, yeah. But they said I would get sick before I started to get better! I have high hopes for this medicine because it worked, if I can just eventually work up to a full dose than maybe I can finally beat this!

Here is a video of them giving me the 2nd shot, don't watch it if you don't like needles!

-The Lyme Warrior

Ukukula (ook-ah-koo-la)

Ukukula (ook-ah-koo-la): Infinate Growth in Zulu

This past weekend I had the opportunity, like every other RM, to go to my mission reunion! This was the second one my mission president put on since being home. I was at the first one, and I'm going to share that experience:

I had mixed feelings on the day of Oct 3rd 2014. I wanted to see my trainer, and she had just returned home. And I wanted to see my mission president and his wife. That was it. I did not want to see any other missionaries. I had only been home 4 months at that point so most of the missionaries I knew were still out. But like my trainer they were slowly starting to come home, and I was so ashamed of myself still.

One of my fellow sisters helped me get out and go. But the whole hour drive to Salt Lake I felt sick with worry. When we got there I felt like everyone, whether they knew I was home early or not, were looking at me like I shouldn't be there. We ate and chatted, but I felt fake and like I was an unwanted and uninvited guest. I should point out that absolutely nobody made me feel that way except myself, everyone was super nice. I just was judging myself super harshly, telling myself I was an outsider.

That night we stood up as RM's with our mission president to say our standing quotes (sorta like our mission mantra) It is pretty long, but I forgot the whole thing! It was completely gone (the first sign that my Alzhimers symptoms were kicking in). I started crying while everyone around me proclaimed how they "loved tough things" Etc. I felt even more embarrassed, if I hadn't driven my friend I would have left, I know I would have, right then and there. After that we were to go up to talk to President and Sister Holm, my mission president and his wife. When I got up there Sister Holm started asking me about Lyme Disease, and how long treatment would last. And President took me in a big hug and almost shaking me said "You are a real return missionary sadie! You are a finisher! I hope you know that!"

I started to cry then. Because I think I wanted to believe him, but I knew I wouldn't let myself. I felt like I needed to punish myself. That I deserved to feel miserable, because I still thought at that point that I could have done more to stay. I just nodded and said my usual "Yes sir." If I would have let believe him, I would have saved myself a lot more tears, and so much more shame. But the depression and shame spoke louder than my desire to believe my mission president.

Then, fast forward to this past weekend. I went again, only everyone that I had served with is home! And most of them were going to be there. I was pumped. I was excited to see my mission president and his wife to show them that I wasn't a big mess anymore! To show them how improved I was.

It is so much easier to see improvement when you have something specific to compare it to. My mission reunion last year compared to this year is a perfect example of my improvement. I wasn't at all afraid to talk to any of the missionaries, and a bunch of them asked how I was doing and I was able to explain that I was still sick, but had improved so much! For the first time I felt like I had made progress. When you can see it and feel it, it gives you so much hope!

After my mission reunion I can now see all the progress, and growth and I think it has helped me move past a lot and continue to get better and strive for constant INFINITE GROWTH!

-The Lyme Warrior

A New Hope

This Monday, I went to my LLMD for my routine 2 month check up. Me and my mom walked into the office and after seeing him for over a year now we know the receptionist and nurses pretty well. But when we walked in there was a new girl sitting at the desk, and new nurses running around everywhere. We didn't like how we were feeling about all the new changes.

Then once we got back into the office, a guy came in telling us he was the new office manager. He told me to tell him everything that was wrong, or new, and He'd write it down and the my Dr would come in. I didn't like talking to this guy, I wanted to talk to my Dr, and tell him that I was having arthritis in my hands. But I reluctantly told him everything. Then he proceeded to tell me about what the Dr's next step would be with me. He started talking about some shots that help organize my immune system and at this point I've sort of tuned him out.

Finally my Dr comes in, and he starts to describe LDI or Low Dose Immunotherapy. It is basically the same science as Allergy shots, or Low Dose Allergens, if you are familiar with those. From what I understood, and from what my Dr, has told me. LDI is not new, but it is just over a year old to Lyme Disease patients. Dr Ty Vincent has recently started using LDI on patients in Alaska, and even though it has been going on a little over a year he is reporting a 90% success rate! My LLMD, sent a nurse up to Alaska to be trained for 2 weeks in the ways of LDI.

LDI is basically shots spaced over time with a little bit of dead Lyme Disease bacteria in the shot. I think of it like a flu shot. The idea of a flu shot is to  give yourself a little bit of the flu so that your immune system can learn how to fight it off. With the LDI when you have Lyme it helps "organize" your immune system. It treats your body like you have an autoimmune disease and tells your immune system to focus on attacking the Lyme. The idea is to start with a super low dose and get a shot every 2 weeks, and then 7 weeks and then 3 months and by 6 months people are reporting feeling loads better! Loads of people are flying out to Dr Vincent in Alaska to get the LDI shots, and my Dr is one of the first in the main 48 states to have the research and the know how from Dr Vincent. He has been only been doing it for about 2 weeks, so I am about to be a guinea pig in a way, but the odds are pretty much in my favor that I will be much better, much much faster! This is a good article that I found that explains LDI injections a little better than I did. https://www.specialtynaturalmedicine.com/lyme-disease-ldi/

All in all, after leaving the office I felt a renewed sense of hope! I felt excited to start feeling better. I start the injections next week and right now I am off all antibiotics, for the first time in over a year! I am excited and hopeful for this new information and pumped to keep everyone updated on how my shots go! :)

-The Lyme Warrior