Broken Crayons Can't Hide

Broken crayons still color... This is something that I am constantly coming back to. It has in a way become my mantra since I started this blog back in October of 2014. I have found a new perspective to this mantra of mine that I haven't thought of before. I have mentioned it in my earlier posts but I haven't directly applied it to myself until now.

Broken crayons always get shafted. If you have a box full of multiple colors of crayons the ones with the paper and the sharpest points get used. It's a fact. But the short stubby broken crayons probably want a chance to color to. They want to add to the coloring book or whatever paper your coloring. And that's where I feel stuck right now...

It's true that broken crayons still color. I know that for a fact. But I think there are times that I find myself holding back because of what has happened to me. Because I have Lyme I'm not able to do this. I haven't realized how much I sometimes hide behind it. Just like a broken crayon hides behind the fact that it is broken.

I noticed it this week as I got ready to declare my major and take the next "big step" in adulthood. I new at the beginning of the semester what I wanted to go into. I just couldn't get myself to go and declare it. To set up a grad plan and go for it. I thought it was because I just didn't want to have a sudden change, but it goes much deeper than that I've realized...

I now realize how much I let my disease hold me back. I have a lack of faith in my future because I don't know what is going to come up next. Right now I'm dealing with potential gallbladder problems because of the year  that I was on 4 different antibiotics being switched around constantly. I've been off the antibiotics for 5 months and I'm still getting effects from them (Fun fact: consistent antibiotic treatments are not nice to your gallbladder). 

So the fear of the future, or lack of faith of what I need to be doing in my life and moving on to the next thing is the struggle. And I let myself hide behind the excuse of my Lyme. I am ashamed that I feel this way. I don't want to fear my future. I don't want to suddenly have to pack up and go home from school. But there is that fear in the back of my mind.

It is a trust issue I know. Trust and faith go hand in hand and fear chases it out. But I also believe that I need to have faith IN my trust. The trust that I know my limitations. That I know that this is where I'm supposed to be. And most of all that this is all in Gods hands.

I really do feel like a broken crayon among nice new pointy crayons here at school. I don't try to let it get me down. But it has been getting me down because I'm hiding behind the fact that I still am broken.

To make sure that I don't do this I have to check myself. If I feel that fear or tension welling up inside me about something big like, midterms, or declaring my major, or something even bigger like my roomate leaving at the end of the semester. When I think of those things and feel the fear coming in, I have to stop, breath and then go and face it. Whether it's a test and I'm worried that I won't be able to rememebr the material because of my brain fog. Or whether its if I'm not going to make it out of bed the next morning because I didn't sleep a wink the past 2 nights. It's all up in the air. And I can feel that tension I side me, I have to notice it and snuff it out as soon as I feel it controlling me, or me hiding behind it. I WILL NOT let it be the reason that fear stays inside of me.

Someone I know once said: "Tentativity is the mother of failure in any endeavor."

I don't want to be tentative and hide behind my illness. It's already a big enough apart of me as it is, if I start to let it control my future then it controls me and I really am Lyme. I don't want to become Lyme. I want to be a person who had Lyme but does more than just exists with it. 

That is the goal. I can still color, but I can't compare myself and let the fact that I am broken run my life. Broken crayons can't hide behind the fact that they are broken. And I can't do the same thing to myself either.

-The Lyme Warrior

Understanding VS. Information Overload

Having a chronic illness and staying caught  up on your social life is something that I have on my mind a lot recently. I have finally been cleared to come back up to school here in Rexburg Idaho. I have been trying to come back for over a year and a half! I haven't been to school in 3 years. It has been such a battle to get here, and now I feel so accomplished, and blessed. But it is very hard, harder than I thought it would be.

Being back in a setting that I haven't really been in, since 2013, didn't seem to cross my mind as a concern when I was prepping myself for the struggles that would meet me coming back to school. I knew it was going to be hard to get back into studying, and yes, the easiest math class has me struggling so bad right now. And I knew that after all of those worries that there would still be a lot of stress and anxiety from other sources.

With that in mind I have spent the last year and a half working on things to help me through these stress filled times. I have been taught, and learned, on my own, tools that could help me with the anxiety, the overload of stress and other issues that I was prepping to face while up here at school. I use grounding techniques. I meditate and do deep breathing exercises. I know my limits mentally, and physically. I have had to swallow my pride and quit at so many things the past 3 years, including a mission, that I feel like I know what I am able/not able to do, so much better. I know when to call it quits. I know when I can push just a little farther and expand my capacity. I know myself really well now from all the work I've put in.

All of this knowledge has been very useful in coming up to school, but there is something that I didn't learn. Not all the counselors, or drugs, or doctors could have prepped me for: I don't know how to have Lyme and be socially normal. All my relationships have changed with people, and how I make those relationships, have changed above all. I've met so many people these past couple weeks and I am struggling to figure out how to be normal with them.

These are 3 examples of problems I have run into and why I'm not sure what to do in the situations:

The first example is from meeting acquaintances, people you sit next to in class. It is generally normal to introduce yourself, small talk, ask what their Major is, what semester this is for them etc. But because this is an LDS school more often or not the question comes up in those first few sentences of conversation of "Did you serve a mission?", "Where?" "When?" "Did you do a semester before your mission?" When these questions are asked to me they end up seeing that I did a semester 3 years ago, and have a gap of 18 months since coming home from my mission until this semester started. I can either choose to leave it there. Or I step in and explain that I got sick on my mission and only served a year, and have been recovering from a disease I got on my mission for the past year and a half before I could come back to school. If this was the end of the conversation I would be fine. But then they inquire about what disease I have, and then they want to know what Lyme does, how it works, etc.

It is at this point in a conversation that I am at a loss... Do I just skim the surface? Do I just explain how it effects everyone differently? Or how it effects me? HOW MUCH IS TOO MUCH INFORMATION?! I couldn't figure out why I wanted to give each acquaintance that I met everyday in my classes the whole story. It wasn't until this week that I am starting to learn why.

Before I go onto explain what I learned this week I have another example of how unpracticed I am at social conversations. The day before the semester started I had met all my roommates but one, and when she moved in our first conversation was me telling her the majority of my life story. I was getting ready for bed and she was standing there listen to me relate way too much information for a first-time-meeting-your-roommate-conversation. I regret that conversation now. I wish I could have slapped myself in the face and kept it on a much more basic level. I don't regret meeting my roommate, that's not what I'm saying, I love her so much. I just wish I could do over that conversation, I would have said a lot less about my condition, and my past. But I understand now why I couldn't stop telling her, and all the other people I meet...

I have been home since June 2014, I have been on different treatments for Lyme Disease since September of 2014. Everyone back home knows I have Lyme, they know my struggles, mostly because they saw me going through them, or they heard me talk about them as I was going through them, or they read my blog. I didn't have tons of friends at my disclosure back home because they were all at school, but the ones I did have knew about Lyme already...

I haven't exactly been in a place, until now where I have someone, like my wonderful roommates. Who just wanted to get to know me better. To me, I saw someone who was willing to listen, and ask questions to understand me. And as someone who has been suffering with an invisible chronic illness for so long now, that is one of the greatest gifts someone could ever give me: The desire to understand me. That is so precious, I see it as the greatest act of love someone can give me right now. When someone asks questions about my Lyme I see it as them striving to understand what I'm going through, because I have craved and prayed for someone to understand me, and still do! I want people to get why I'm feeling so bad!

So as my roommate asked more and more questions, I unloaded, and explained more and more. And our conversations about Lyme never really stopped, it wasn't so much Lyme in general, but MY Lyme... I realize now, that I shared too much.

From these experiences, and one more that I'll share, I am now searching desperately for a way to figure out how much to/not say about my disease. The last example that I had was this past weekend, it was the day before the full moon. I was feeling it's effects a couple days early (if you want to know about the moon and it's effects on Lymies click here), and some friends of ours came to our apartment to ask if we wanted to go sledding. If I wasn't sick from the full moon I would have totally been down! But I said I couldn't because I was sick. They asked what I had, I sarcastically answered Lyme Disease. They pushed for more information, so I explained briefly about how the full moon makes me more sick.When I finished the bizarre excuse, as I'm sure it sounded to them, one of our friends backed slowly out of the apartment murmuring apologies and looking at me like I was growing another head.

Again, was that a mistake on my part? Did I share too much? I have now come to the realization that, as it took time for me to be able to talk about everything that had happened to me, it also means that everyone else is going to need time and space to hear it, as well. These are personal experiences that I have dealt with. They have happened to me over an extended period of time, more than most normal people ever have to go through, and I realize now that they are to be shared at a discretion. Just like I can't begin to understand the struggles of a holocaust survivor, one of my fellow classmates should not be expected to understand my struggles as well (SIDE NOTE: I am in no way comparing my struggles to that of the holocaust, I'm just using it as an example).

I understand now that I have to control my urge to want to share everything that has, or currently is happening to me. I have to curb that desire to want to be understood, even though I still crave to have someone who can understand, and converse with me about it on the same level as me, it's not here right now, it might never be. And I also see now, that I can't create someone who understands by dumping everything I've gone through onto my poor roommates, or some guy that just wants to go sledding with me, or to the girl I sat next to in my Humanities class. It doesn't work that way. I can see now that not only is it ridiculous to expect them to understand, but it's also really selfish of me as well.

From these 3 experiences, I see about 2 reactions... The first is something like my third experience. They are a little (or a lot) freaked out, they slowly back out of your apartment, or the next class they make a point to sit on the opposite end of the room from you. The second reaction, that of my roommates (which is where I get the idea of me being selfish in sharing my story and expecting them to understand), is that of a growing sense of helplessness, they want to help, but they have no idea how. They are so sweet and kind, and as I share more and more about my conditions, their desire to help increases, but they can't. So they get this extreme feeling of utter helplessness, that just turns into a fear for me. I don't expect them to help me, that is what the Doctors and Counselors are for, I was just feeling so happy that I'm maybe, possibly, hopefully helping someone understand me, finally... That is where I was being selfish. It is natural of them to want to help. And the more I shared about how I'm feeling was like me expecting them to be my Counselor, I didn't expect that of them directly. But subconsciously it was like I was doing that to them, and they were feeling more and more helpless.

I have since then apologized to my roommates, and I am using a much better discretion on when and where, and whom I share with, as well as how much. I am now trying to take Stephen Covey's advice (shown in the quote above) and try to understand people, because we all want to be understood, in one way or another. I have a hope that as I try to understand others, my desire to be understood will calm down, and I won't feel the need to dump my past onto others. Now, I know that I have no perfect answer to this, it is still just based off of trial and error. Sometimes I think I should just have flyers and when people want to know I can just give them a basic flyer about Lyme. All in all, from these past 4 weeks at school, I have learned tons of stuff! And I think, thus far, I have a better grasp on what is socially acceptable, and what is not, in terms of sharing about my battle with my disease.



-The Lyme Warrior

(If you have any tips or hints as to how you have figured out how much to share about your chronic illness then please leave a comment below, I am not at all an expert at this, and could still use any help in this area.)

How the Chronically Ill are Effected Socially

On my blog I focus a lot on how I am feeling mentally and physically and even occasionally emotionally, but one thing that I have maybe mentioned here or there, but never dedicated time to explaining was how a chronic illness, just in general, effects one socially.

I have had my chronic illness since 2013, but I didn't know about it until September 2014. Since then I have had to drop out of college, cut back heavily on my working hours, and move home with my parents. At age 21, when you are culturally in the prime of life, you are going to school, picking a major, internships, dating, going on fun spring break trips with friends, living with roommates, etc. It is all part of the experience that is socially normal.

But with someone with a chronic illness, like myself, it feels like it is everything listed above, and more, that we miss out on. The normal for us is 14+ hour day in bed. A monthly, and sometimes even weekly, trip to the Doctor is the only time you will get ready for the day. And getting ready just means changing into some clean sweats, and actually putting on a sports bra.

So, now that I am slowly on my way to recovery I have to get back into the swing of what wasn't my "normal" for 2 years, it now has to be. So here are a list of a few struggles that the chronically ill struggle with in social situations.

1) "Netflix and Chill"

With the chronically ill the word "chill" should NOT be in their vocabulary, because there is no "chill" about chronic illness. It doesn't exist. Netflix, however, plays a very big part in the life of the chronically ill. In fact, don't be surprised if they have seen every episode of streaming movie that you want to watch. Netflix was invented for the chronically ill that are on bed rest (in my personal opinion), but that doesn't meat it doesn't involve them feeling super sick or in constant pain while watching. Netflix is a way to distract from the pain, not so much a numbing agent.

2) Catch up Conversations

When you see your high school friend that you played basketball with during a holiday break when you know you have to get your christmas shopping done, or you know it won't get done, you play catch up. But eventually, the chronically ill run out of questions to ask (even though they probably already knew their whole life story from spending 5-6 hours on average switching from FaceBook to Instagram), and the questions are turned on them

-"What are you doing in life?"

What runs through my head: "Does getting to know your pharmacist on a first name basis count? I shouldn't mention that I'm only on 20 mg of Adderall Extened release once a day instead of twice, even though that is my biggest accomplishment so far.

Me: "Nothing really, just trying to get better..."

-"How have you been?"

Me: I've been alright, just trying to stay busy.

What I think about saying: I have been better, that's how I've been! I have been in bed for the past 48 hours watching normal people live their normal lives that I feel I want and deserve but I don't get. So I've been depressed, I've even been having suicidal thoughts and have been seeing a therapist weekly along with my regular doctor visits. Thats how I've been.

-"Are you working, school?"

Me: "Yeah I'm just working, saving money..."

What I think: Ha! I'm lucky to get 10 hours a week, and I won't mention that I lost my scholarship because I keep deferring with a hope that I can one day go back.

-"Are you dating anyone, or been on any good dates lately?"

Me: "No not really, just living the single life..."

My brain: Bahahahahahaha haha, hahahaha... *sniff* *wipe a tear away* what dates? Big raisins?

-"Well you look great."

Me: "Oh thanks, so do you!"

-What I want to say: "Yeah my doctor took me off gluten and sugar indefinitely and when I finally had the motivation to do it I dropped 30 pounds in 3 months, he also wants me off dairy but he said I can't lose anymore weight, but now I have zero clothes that fit, I've added 3 extra holes in my belts and everything I own is baggy.

The fact of the matter is, I would actually be fine saying those things, or maybe most of them but then they lead to the big question that is hard for the chronically ill to answer:

3) "What even is..." or "What does [insert chronic illness of preference here] do?"

The moment comes in every single person afflicted with a chronic illness that they can't tell their whole story anymore or they will ring the persons neck. It might just be because it's been a bad day, or you have explained it one to many times recently, or something else. But when it comes, after that you will do everything to avoid having to explain as little bout yourself and your illness as you can, because 1) explaining it won't do it justice and 2) do they even really care? and 3) if so, they still won't understand, so why bother. And 4) how much is too much information?

So what I have found is you can offer the person a short version, or the long version... the only bad thing is, the short version usually is followed up with questions that turns it into the long version.

This is a problem for those dealing with a chronic illness, how long can I go on with my story until they don't care, or until they look at me as something less than human because I make my suffering sound awful, or scare them into thinking they have it... Or worse, have them start chunking medical advice at me? It is a huge dilemma that is very hard to figure out. Sometimes, I think seriously about printing out fliers so I don't have to explain myself.

4) Finding a conversation that you really find interest in

It is hard when you have been sick for so long, and dealt with real things like depression, political awareness of your illness, insurance holds on medication that you will willingly give up your arm and leg for, and even sometimes suicidal thoughts, to suddenly get thrown into a conversation about the latest celebrity gossip. Or about the "big game" or the latest new album. Those are hard to not feel like you are wasting time and energy, when you haven't practiced them for a while. And it might sound silly, or selfish. But it's not so much that the chronically ill is thinking "I have so much more pressing matters to worry about." but it's more like "How do add to this conversation, I know nothing about any of this stuff." Or they could be thinking, "I can't think about this when I'm worried about when my next seizure will be, or when I can go back to bed again." So many other things are pressing on their mind, they can't mentally connect with the conversation.

There are ways others can help the chronically ill. They can really sincerely listen if they choose to open up about something. They can notice if the chronically ill aren't adding much to a conversation, and not judge, or feel like they have to include them, sometimes it just doesn't work for them. Let that be ok. Ask if they feel comfortable sharing their story, before diving in. If they say they don't feel like sharing about their disease, that doesn't always mean no, and never ever. It might just mean, not right now. Catching up is hard, instead of asking them how they are, ask how they have been improving, or if they don't look so well, ask if there is anything they need. It is up to them to then be honest about themselves, something that I have found is sometimes super hard to do generally, not just for the sick. Whatever happens try not to let them feel more awkward than they probably already are.

All in all, the social aspect of being chronically sick is hard, and challenging. It is never easy to just get back into the swing of what is socially normal after being out of commission for so long. But if you don't want to feel even more of an outcast than you already are, you have to work to get yourself back into it, socially. It's almost like a healing process all on its own. It just goes to show that it is more than just your health that suffers in with Chronic Illness.


-The Lyme Warrior

LDI "Overdose"

Hello! A ton has happened lately and I'm sorry I haven't been around to blog about it.

This post is just a quick update about my shots. But I should have a longer post coming sometime this week as well. 

My LDI shots have come to a complete hault for 7 weeks. You see since they have been shooting me up with dead Lyme Bacteria every 10-14 days I have been doing much better. And when day 12(ish) comes along and I feel it wearing off I get another booster. The only thing is they dilute the shot less and less each time. They can't give you the full blown dead bacteria because that would cause awful herxhimer reactions because the antibodies aren't built up to fight it off. It would sorta be like cannon balling into the worlds hottest hot tub. You need to slowly work your way up to where your body has just enough stamina to fight off the LDI (and thus reprogram, essentially your immune system to fight off the Lyme). As your immune system gets stronger the idea is you will then need less and less of the booster so that your body can just take care of the Lyme itself. 

I am at the stage where they are still finding just the right amount of dilute to dead Lyme, so that I feel good for a full 2 weeks with a decrease in symptoms. The ideal way to find it would be to just have me say "these past 2 weeks have been great, let's see how long I can go on this booster until I feel I need another one." Like I said, that's the ideal pathway of the concept of LDI for Lyme... But that's the key, it's Lyme, it throws a wrench in everything somehow, it finds a way.

December 22nd I went in for a shot I started at "15c" and had worked my way to "9c" (I'm not sure what the "c" stands for), I still felt like it was wearing off at day 9 or 10. So naturally they went from 10 to 9. And it was too high! It sent my body into a huge Herxhimer Reaction! I am still feeling the effects. My doctor had told me that I would know if it was too high because all my symptoms would come back, and I'd herx (if you want to know what a herx is click here)... 

December 23rd I had a mental break down. I was aching all over. My depression and anxiety kicked in full swing, with in one day I went from excited for Christmas, to not even wanting to participate in the season at all. With my thoughts dark again and myself feeling like I was being hit with emotional tidal wave after tidal wave, I was a mess. I knew it was too high. I had gone a month and a half without needing a nap, and I had gone 3 weeks of sleeping all night! Suddenly, I am now laying awake until 2 or 3am... Or waking up at 1 and not going back. My brain fog has kicked in full swing again. I'm in pain. It's just all super frustrating. 

The good thing is, we know that "9c" is too high. So now after we wait 7 weeks for my antibodies to calm down and it all to get out of my system, I can drop to "10c" and stay there. And work my body into it. That is the new plan with moving forward. It's a minor 7 week set back. But the doctor thinks within 2 or 3 years of these shots, and spacing them out I won't need them anymore, I can officially be in remission! And that's the goal. That's the destination. 

So here's to a new year of fighting Lyme in a new way! 

-The Lyme Warrior

Acceptance

I remember when I first had it suggested to me that I was depressed. It wasn’t just that I wouldn’t believe it, but I couldn’t believe it. I knew that depression wouldn’t just jump at me when I was doing some of the best things at the time in my life when I was loving life. I was serving a Mission for the Church of Jesus Christ of Latter-Day Saints. It was fun hard work. I loved it, but why was I feeling not just sad? It was like I emotionally could not be happy. It wouldn’t happen. So when it was suggested to me that I see a doctor and get professional help I just could not believe it.

Then when I eventually had to break down and go to a doctor and get put on some anti depressants I was embarrassed, frustrated, confused, but most of all I couldn’t accept it. I kept saying “this is not me.”

Then when I came home early from my mission I was diagnosed with Lyme Disease which mimics other illnesses, the Lyme in my brain was mimicking Bipolar Disorder and Manic Depression. So at that point it was easier to accept that there was a cause to the disfunction inside my brain. I just didn't realize how much worse things were going to get.

From the Herxhimer reactions, to the brain fog, to the nausea to less and less sleep at night, plus the constant dark cloud of depression and anxiety hanging over me, I found myself wishing it was just Bipolar disorder again. In my brain I thought that if I accepted what was going on all around me it would make things worse. If I said "ok I have Lyme." It was like me saying "Ok, I am Lyme." and there is a big difference that I didn't know about.

If someone decides they are going to be a brain surgeon and they are going to start school, they can't say, "hey I'm a brain surgeon." They can say that they are going to become one, or that they want to be one. But that doesn't mean they are yet.

Maybe that is a bad example... If you are going to go cliff jumping, and haven't ever been, you can't say "I have cliff jumped before." It's a lie, you haven't experienced the thrill, or butterflies in your stomach as you jump off the cliff. You haven't felt the wind rushing past you as you fall down to the water with a splash. And right before you jump, there is a moment, where you have to accept that you are going to jump. you are going to allow your feet to either step off the cliff and fall, or to run and leap off. It is your choice, but I know for me, the first time I jumped, I took about 5 minutes to allow myself to accept that I was going to jump. It is scary, and your brain is probably screaming at you not to. I know I had a list going of everything that could go wrong with that first leap. But when you finally just go, it is a thrill, and your brain doesn't hold you back anymore...

It took time, but the moment I was able to say, to myself, "ok, I have Lyme. It doesn't mean Lyme is me, but I do have it." In that moment when I said it and accepted it, I could then start healing the healing that needed to take place that wasn't exactly physical. With any chronic illness that last for long periods of time, you have to heal physically, but you also have to heal mentally, and emotionally. Something happens to a person when they have been sick for a long period of time. The inability to function as a normal person should be able to, can do mental, and emotional things to said person. As the chronic illness takes over the body physically, the time starts to take over the mental and emotional well being of a person. 

So, how do you accept it? How did I accept it? I am not a professional at acceptance, but there are a few things I have learned about accepting hard things.

1) Meditation

When you have a chronic illness you start to have a lot more "you time" then is probably healthy. You can A) binge watch netflix B) depressingly stalk all your friends on Instagram and see how awesome their lives are as you fall farther and farther behind where you want to be. OR, you can practice healing techniques of the mind. There are so many studies done on how healing the mind, can help heal the body. Take time for yourself, (netflix doesn't count) go for a walk outside, if your too sick to do that sit somewhere quiet and focus on your breathing. I don't want to sound  like a hippie or some crazy mainstream hipster. I just know that mediation can help with healing, but mostly acceptance. 

2) Trust a medical professional

This one is probably really hard for anyone with Lyme, and many other chronic illnesses. You see, trust in a doctor, or doctors (plural) is hard when you go from doctor to doctor telling you "it's all in your head." Or where you go to one physician and they tell you something totally different from the second opinion you just sought out. Trust is so hard. But I know when I had no idea what was going on, and why I was having crazy mood swings, and after I had come home early, I was stuck. I was in pain, and I went to my chiropractor. He had helped me through many out of place ribs and bruised tailbones during my high school basketball career. And so I went for an adjustment, just to try and relieve some of the pain. He told me there was something more to my depression. He knew me very well. He said he didn't know what was wrong, but he wanted to help relive me of pain until some doctor that I was seeing at the time could figure out what was going on. The fact that I had someone outside of my family believing me, and in the medical field was such a relief! 

Now, I realize that some people probably think they will never trust a doctor ever again. Some people might not even know what is wrong with them, they just know whatever they have is chronic and no doctor will believe them. So have at least one person in your life that trusts you, that believes you are really suffering, and don't lose that. My sister knew it wasn't really me. While my parents supported me all through this of course as loving parent do, I knew my sister knew that something else was going on. When I told her I couldn't do something, she believed me, and left me alone. My parents would still try to get me to go places with them, when I knew I couldn't get up off the floor, this was their way of supporting me, I know that. But it was probably the least helpful thing at the time. My sister realized when to give me space, and she gave it perfectly. And I'm so grateful for that.

3) Find Hope

Once you have found trust from a doctor, and trust that what is going on in life will have some common relief, you can now search for hope, for more meaning. I have so many reasons to hope. I hope that my trust in my doctor is the right choice for me. I hope I can get through a day doing more than just functioning. I hope my Savior is there carrying me when I feel like that dark cloud of depression is looming so close to me that I can't breath. I hope that the medication I've been prescribed is not withheld from me by my insurance. 

There are always things to hope for, but unless you have trust, or faith behind that hope, the hope is more like a wish. I came home knowing that I just wanted to help people. That is what I did on my mission, and I loved it, and that is still, to this day, what I want to do. But when you can't get out of bed, how do you help people? My new hope was to figure out a way to help people while I was in my state. And that is what I did. I started this blog, to try and help others who were suffering through the same thing. This is my hope, that I can help spread awareness about my condition in hopes that it will help someone. Whether it's someone suffering with Lyme, or someone who has come home from their mission, or if someone just really struggles with depression. I don't know! I just know that finding a way to still help people kept that hope alive in me. And when I have that hope I have a renewed purpose.

4) Understanding

For me, acceptance can only be found as you gain more understanding. For example, I know my parents didn't fully understand how i was feeling, they still don't. But when they have an understanding of what is going on with me medically it is easier for them to accept, and for me as well, what is going on. If someone doesn't believe or accept a religion, lets say, it might be because they don't understand something. I have talked about, in pasts posts, how there is a fear that comes with one doesn't understand something. If an elderly person is afraid to upgrade their old dial up internet to new Wifi, it is probably because they have a lack of understanding. The more I understand what is going on with my body the less scared I am of Lyme, and what it is doing to me. I have learned that you can't have acceptance of something where there is fear. It either needs to be shoved aside, or given time to gain understanding.

5) Loneliness 

There are things in life, that we have to understand, and they are hard. And one of those things is that somethings we have to do alone. With any chronic illness nobody truly understands what is going on with you. And when you realize that, and accept that, it can be lonely and depressing, but when you can accept that loneliness you can realize that some things you just have to experience on your own. It's just part of life. You can look at it as a negative hard and sucky thing, or you can choose to allow yourself to grow during the times of loneliness. This one I struggled with for a long time.


All in all, acceptance of any chronic illness, not just Lyme can take a very long time. It did for me. and these are just a few ways that I have come to acceptance of where I am at in life. There are many other things that can help us accept where we are. Reaching out and finding others that are feeling the same things we are is also a way for us to gain acceptance of where we are at. Reaching out to others as played a huge part in my acceptance of not only lyme, but also coming home early from my mission. Acceptance is gradual, but it is crucial in the gateway to healing.

-The Lyme Warrior

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