Sunday, December 13, 2015

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








Saturday, November 14, 2015

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






Thursday, October 22, 2015

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




Thursday, October 15, 2015

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!


video


-The Lyme Warrior





Tuesday, October 6, 2015

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




Wednesday, September 23, 2015

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




Thursday, August 20, 2015

PTSD and Depersonalization and Derealization


Usually when I post things they are what has happened in the past. When I am over whatever has been happened to me. Mostly because it's easier to talk about something that has already happened. And also, becuase I'm not good at sharing what is going on in my life right now. But this post is different. This is what is going on right now with me. And it is one of my biggest challenges so far...

Let me rewind to last August. I was waiting for the results of my Western Blot Lyme test to come back. But the Doxycycline I took to see if I had lyme had made me super sick. My doctor had said that if it makes you sick, you have Lyme. Just because I didn't have a paper back from Palo Alto, California stating that I was a positive carrier of the highest vector disease in America, didn't mean that we were pretty sure I had it. I was researching Lyme more and more everyday. 

When I wasn't doing that, I was laying on my bedroom floor, unable to get up form the depression and exhaustion. I was dealing with anxiety more so than ever because my mom was in Switzerland and I had serious attachment issues after coming home. Do deal with all of this, I was cutting. I cut to escape the feeling of complete hopelessness that entrenched me since coming home early. I cut to feel normal. To release the pain and worry I felt inside mind that I couldn't explain and couldn't understand. I released the pain physically because it was easier to deal with, and it numbed the mental and emotional pain... I was in a bad spot.

Now fast forward past the official diagnosis, past dealing with the PTSD that came after all that trauma. Fast forward past the new symptoms that appeared, losing my reading and focusing ability, locking my keys in my car, feeling nauseous all the time, fast forward to now. A year later... My PTSD is back. And it is known as the "Anniversary Reaction."

Anniversary Reactions happen when the brain is trying to process certain memories, but can't because they are stuck in short term memory. While the brain is trying to process the certain memories into long term the memories are being replayed in the brain. The body is experiencing these memories as if they are real and react the way the body did originally. For example there was a woman who was caught in a burning building in New York, but escaped and ran away. And on the anniversary she found herself in that part of town running away, even though there was no fire, and no danger.

One theory about why reactions like this happen is because it is believed that encoded in a memory is information on how to cope with the trauma. These traumatic memories tell the body what they should be afriad of, how to look at something and react, even how to think and feel in a certain situation. So if the memory is being replayed over and over again, the information is being sent repetivley too, thus the body reacts the way it is told. The woman caught in the fire ran away from a non burning building a year later because her traumatic memories were being triggered by the date and sending the information to her body to "run".

Right now my body and brain are doing the same thing, but with a twist.

An artists depiction of Derealization
It started a couple weeks ago, I noticed people would sound like they were underwater. Super muffled, and I felt disconnected. I didn't know how to explain it, but it felt like my depression was back again. I explained it to my doctor and we switched up some medicine. But things started to get worse, soon I was in what I felt was a "dream-like state" I was watching myself do everything. I was completely detached from myself and society. I was there but I wasn't. I was watching myself do everything. I felt like I was going insane! I was so scared. But still I didn't know how to explain it. There really aren't words to describe how detached I felt, and still feel.

At the beginning of August I never once felt like I was one with myself. I was stuck in my "dream" and I had stopped sleeping, and if I was asleep, I was still watching myself sleep, it was maddening! That was when the thoughts came back... And they were so strong, they weren't fleeting, or subtle, it was as if my detached body was telling me (floating above it), to cut myself so I could feel level headed again. And I started to do it again. I only felt attached to myself, and also to the world if I was in pain. So I picked up the razors again...

It's important to note that at this time my parents were both in New York, like my mom was gone a year prior to Switzerland... I eventually broke down (see my last post about my good friend "LEO") and called my doctor, I explained how I was feeling, they immediately went to action, and I am once again showering without a razor, I am doing all the old things I was doing last time I was in this state of mind.

Then this week, I went to my therapist. I explained to him everything. I told him my frustrations with feeling like I have back slid and I'm not actually getting better. I told him that I was cutting again. That I felt disconnected still, detached. And in a dream. I tried to find the words to describe it, like I am now, but I couldn't then, and I can't now... That is when my therapist said it was probably an Anniversary Reaction, of PTSD... As he explained what it was (like I have done above), all the pieces came together:

My mind is dwelling a lot more on the fact that it was my diagnosis anniversary. I am thinking about it more, and my body is reacting how it had when the events were actually cutting. However, I asked my therapist about my detachment and "dream-like state", because that is new. He said it is probably other parts of my brain trying to get as far from the traumatic memories of hurting and cutting myself as they could. The Irony of it all, I realize now, is that because I am experiencing the detachment it is causing me to cut, which the detachment is trying to avoid in the first place. It's a vicious circle.

My therapist also explained that there is a word to describe my "dream-like" state. When I feel separate from my body it is called Derealization. And when I am separate from others or society it is called Depersonalization. They are real disorders, but can also come from PTSD.

I now am in the process of what is called "Grounding." For some reason it is really hard to do! I have all these techniques that I use to try and keep my mind in my body and my body and mind in the now with others. I practice a lot of breathing techniques, those are easy. But the hard part is when I feel way separate, whether it's Derealization or Depersonalization, I have to find 3 different sights, and notice the details. Then 3 different sounds, then tastes, then smell, then touch... If I am not "grounded" I have to repeat with 3 different kinds of the 5 senses. The idea is to get my brain to recognize reality and focus more on the now and staying in my current state. It might sound easy, but it's not if you are floating around way above your head.

Beginning next week I will go through some therapy called EMDR. It is super hard to explain but it is the process of helping the brain process the traumatic memories stuck in short term, and helping them move to long term... If you want to know more about EMDR CLICK HERE.

When I found all this out. That I had PTSD again, along with Derealization and Depersonalization, and that it was all because of the Anniversary Reaction, you might think I was more discouraged... But actually I felt more hope! I felt relived! In my mind, before I new everything, I felt like I had back slid, and was getting sick and again and that treatment wasn't working because my thoughts were back to self harm. In reality my brain is working hard to get better, it's trying to process those memories, and at the same time I have all these things going on, but it is a relief to know my body hasn't quit fighting along with treatment. I am grateful for it. It may be slow, but I am definitely still fighting. And grateful to know that there is still hope in fighting this crazy disease as well as PTSD!




-The Lyme Warrior






Wednesday, August 5, 2015

A random and nonspecific story:



Once upon a time there was a girl named Shadie. Shadie had lemon disease, it was always making her tired and what not, it was pretty miserable. But had started a blog to help raise awareness as well as help other people with lemon disease know that someone out there knew how they felt as well. Shadie's blog was a success. She didn't want to look at it that way, she just saw it as helping others through her own crappy experiences. 

Then one day Shadie couldn't write anymore... not about the real stuff anyways. She was troubled. The bad monkeys had returned... Shadie had bad monkeys and good monkeys just like everyone else. But the bad monkeys were overtaking the good monkeys again, like they had about 9 months ago. The bad monkeys told her to do things that she did not want to do. She was scared! Why would her own monkeys want her to hurt herself?

Shadie was NOT going to give in! Instead she tried to pretend they weren't real... that only made the monkeys yell louder. Then she tried to train the bad monkeys to be good. But she didn't know how. she wasn't an expert monkey trainer! Eventually, she slowly gave into what the monkeys wanted. It was the only way she felt better anyways. Because from the monkeys screaming at her, and Shadie trying to act like everything was peachy, she was losing her connection with people again, just like before...

Shadie started walking around like she was in a dream state. Like she was displaced and was watching herself do everything. She became disconnected again, and not much would bring her back. But giving into the bad monkeys seemed to make things a little bit better. But she knew what she was doing was wrong. And she began to hate herself again for doing it. She was feeling guilty for listing to those bad monkeys.

Shadie had lost the desire to blog and share with others her struggles with lemon disease because she didn't feel like they were real anymore. Shadie felt fake. Which made her hate herself even more. Which made the monkeys start to win. The monkeys would minipulate the self hate Shadie had to try and get her to turn on herself.

So one day, but not any day recently or anything like that, Shadie's friend, (because this is a nonspecific, random story we will call her Leo, and not because she is a Leo or anything like that) Leo read an article Shadie was in the process of writing. Shadie had not been able to edit the article and send it back to publishing in over a month. She was preoccupied with the monkeys. The article was about how Shadie had learned to overcome trials by sharing her experiences with others. Leo read it and told her to publish it. Shadie said she would, but didn't really say when, she was good at being vague now. Then for some reason that Shadie couldn't figure out Leo asked Shadie how she was doing with her monkeys. Leo was one of the few that knew Shadie struggled with bad monkeys, but Leo didn't know how bad it was. But still even those that had some idea never asked. Nobody ever thought to ask "Hey, how's your monkeys?" Because people don't usually do that.

Shadie didn't want to tell Leo because she felt ashamed about the bad monkeys. But Leo somehow knew to straight up ask. And Shadie couldn't give her a half-crap vague answer. So she told Leo the truth about the monkeys. That they were telling her to do harmful things to herself that she didn't want to do, but that the had given in agin. Leo told her to tell other people that could help her. But Shadie didn't know how and was scared. Then Leo pointed out that Shadie was being a hypocrite by writing all this junk on her blog and for newspapers but not even living up to it herself. 

Shadie realized Leo was so freaking right! How could she tell people to stop pretending they were fine and get help, when she was doing the exact opposite! That is when Shadie also realized why she didn't want to blog, and why she was putting off publishing her article! Because deep deep down Shadie knew she wasn't taking her own advice! She knew but the bad monkeys were distracting her and she was using all of her energy to try and pretend that she didn't have any bad monkeys. 

By Leo telling Shadie that she was a hypocrite, it was like a slap in the face. But not the bad kind of slap, the good kind. The kind you see in the movies where someone is freaking out and then someone else slaps the person freaking out and tells them to essentially "get a grip" and then the Leo did for Shadie. And Shadie was so grateful for that. Leo had slapped Shadie in the face, in a good way.

Leo had ignited a spark inside Shadie. Shadie started to act instead of being acted upon by the monkeys, it was a slow process but Shadie slowly started to turn outward. Shadie is still going to try and work on getting the bad monkeys to go away. But it is like she is starting over again.

Only Shadie feels like it's harder the second round, maybe because she is more aware of what the monkeys are saying and telling her to do. She doesn't know exactly. But she is going to try and not be a hypocrite anymore.





This was a random, nonspecific story by:


-The Lyme Warrior