Sunday, January 25, 2015

Sick or not sick? That is the question.

Somebody asked me this week how I still act and look normal even though I am actually really sick... Now I have thought about this, at the time I didn't know what to say, I just signed and said that I didn't know. But as I think about it, I have a couple theories as to why I try and look as normal as possible.

Theory #1 
The bacteria is in my brain. This is a fact. And as such it has not only given me early Alzheimer's symptoms and depression. But sometimes I wonder if the bacteria has also given me the multiple personalities... How do I act normal? Well it's because I have 2 people up there in my brain! And the sick one is over crowded by the one trying to be real. Now this theory would be more accurate of I named the crummy personality from the happy personality, but I don't like this theory so I won't go on this one and have it become real. Actually this one is probably the dumbest theory of them all, ah well, get rid of the worst first.

Theory #2
My pride. Ya see I don't want people to know I'm suffering from depression. So instead of being down about it and letting the world know (I guess I'm kinda eating my words here by posting this on a blog!!), I just put on that happy face and go with it. I'll send a couple of funny snap chats to friends and if all they see is someone who seems happy, then good for them! Yeah I might be feeling really bad inside. Majority of the time I'm probably really down about something. But do I tell them? No! I am not one to burden people. Even on the mission I had the hardest time towards the end because I felt like a giant burden to my mission president, and to my companion. I can't stand feeling that way. That is why I feel like this might be a possible reason I don't look so sick, because my pride is bigger than my sickness.

Theory #3
I still have a strong belief of "fake it till you make it!" I had it on the mission, and even though I know I don't always "make it", I just can't quit. This was probably my last survival skill I used on the mission. I started being what I loathed the most, and it was a fake missionary. I don't like being fake, but for some reason deep inside me I am everyday, maybe because it is to protect my pride like in Theory #2, either way this is a possible reason as to why I won't walk around like a zombie everyday.

Theory #4
This theory ties in with #3. You see sometimes I wonder, because I can fake it, I have become quite the thespian! Haha I'm not bragging, I'm just saying that I can take it as a sort of compliment when someone says "well you don't look sick." I can look at it as a critique, my acting skills must have gone up another level! Now I'm not saying I can go be in the next marvel movie, but I am saying that Kristen Stewart better watch out! Hahahaha jokes!! This theory is also another probably not true, but it does give me a laugh.

Theory #5
I am a firm believer in the saying "misery loves company" and I don't want to be the miserable girl making everyone else miserable along the way. That is NOT what I am about. I'm the one who makes people laugh when they are down. I don't get down and bring people with me. That isn't me!! And I felt like on the mission I started to do that towards the end. I guess you could say I was in pretty bad shape towards the end because everything just seemed to hit rock bottom. And now that I can look back and see the things I did because I was so sick, I now know my limits. I can tell when I am getting to that miserable "rock bottom" spot and I can either remove myself from society for a little bit and take a nap, or lock myself in my room or whatever is needed at the time. I don't like making people miserable with my own misery. 
Sometimes I feel like people think like Calvin's mom, but lately I've been thinking like Calvin.
All this being said, it is a good thing when someone tells me I don't look sick, or that they never would have guessed I was so sick... Or whatever. It's good because whichever theory you want to use, it's working, I'm not bringing people down, I'm not burdening others with my problems, I'm excelling in acting, whatever it is, I'm accomplishing it. Some days more than others.

I realize that it is also a little bit of a bad thing. It's bad because day after day I wear myself out extra. I fake being one person when really I am hurting inside, mentally, physically and emotionally. And then I end up getting into these big deep pondering moments where I ask myself who am I really? Am I this happy girl? Then I say "heck no! She's so fake!!" And then I say, well I guess it means I'm this tumultuous messed up crazy thing then. And I don't want to be that either.

All in all, I feel like if you take all these theories and squashed them together I'm either sick or fake. Miserable or Schizophrenic. I either have a future in acting or a deeply wounded pride. I can't seem to find that in between. All I know is that I wake up each morning and all the negative things that I say to myself about not being able to make it, or that I can't I push them out and get ready to face each day with whatever comes my way.

-The Lyme Warrior

Sunday, January 18, 2015

"What is Lyme Disease like/What is the worst part?"

Sometimes you don't have the words to explain what you are feeling. I feel like most people with chronic illnesses and/or depression find that to be true. I feel like because of this they feel extra distant from society. Not only does society not understand, but those with depression, for example, can't explain how crummy they feel besides "I feel really down today, I don't think I can go running." To society that sounds like an excuse. "You're down? Well get up! Let's go." And that's how I saw it too. But not being able to explain how you really feel to make someone understand is enough to drive you into an even deeper depression than before. 

As human beings we are always trying to express how we feel. Some more louder than others, and some in how they talk, or dress. Some in how they do their hair or whatever, it's how they feel. For me it's sweats, glasses, a Nike Tshirt, ponytail, and no make up, everyday? Yup, Lyme Disease! That's me!

So I'm gonna attempt to try and explain what it's like. And you'll find a lot I'll say "that's the worst part" and that's because at times that one thing is really "the worst part". And another day something else might be "the hardest part." It's just a roll of the dice, day to day, hour by hour. So here is my feeble attempt to try and explain and enlighten y'all about my experience so far.

What is the hardest part?

-sometimes it's exhaustion and that is usually what I explain lyme as. When asked what lyme does to me, I'll usually say I'm always tired. But that doesn't even touch it! I can't explain how crippling constant exhaustion and fatigue are. I don't have the words.

-sometimes I feel like an old lady. There is nothing that can get me to run up and down the court. I couldn't do it to save my life. Not because of pain but because I literally can't do it. I physically cannot get myself to run or move the way I should be able to. And part of that is lack of motivation and depression. The problem is when you realize that, it just sends you into deeper depression knowing that you can't do something that should be simple. It's a vicious circle. And it's not just with basketball. It's everyday stuff, like working with kids. I used to dance with them. Play way more games, bench press kids, tell stories. I can't find the energy or the will to make up stories or do any of that other stuff.

-going out with friends and eating something and thinking to yourself, "I'm going to regret this in the morning." Eating a milkshake (or nearly anything sugary of any kind) and knowing because of that deliciousness you are shoving down your gullet you are going to have a really crappy day tomorrow. But you are out with your friends. You haven't hung out with anyone in weeks! So you indulge. And the next day you can't move, the walls are spinning, you ache and the day is just bad. All from a stupid milkshake. And it's not just that, a bowl of ice cream, candy, chocolate! 2 days after Christmas of not caring and eating whatever I want had me super sick! It was the pits!

-The depression. I want to just pound that thing in the face. It is a crippling handicap. Lacking motivation to see people. To talk to people. To be yourself! It changes you. I don't have words to describe this either, and that is also one of the most frustrating parts, I can't explain how I'm feeling a lot of the time. Depressed doesn't cut it, and it just sounds like an excuse coming from my mouth, so I rarely use it or acknowledge it, when I explain how I am feeling. Besides most people don't understand it anyways.

-sometimes, (and this is still part of depression) the worst part is Feeling like you just need to cry... All the time! Wanting to hide! Feeling like you are in a giant pit and each time you try to climb out you inexplicably get deeper and deeper. That's my best analogy. It makes no sense, just like depression.

-Anxiety. Being glued to your bed in the morning because of either being too exhausted and/or having anxiety about the day ahead. Being so anxious that you are just going to sob. Your heart picks up and you breath super fast. And you can't control anything with in your body. Sometimes you shake. And you just feel completely overwhelmed and out of control. Then when it is over you are left exhausted. If you fight the anxiety for control you are even more exhausted. If you let it take over you cry for 2 hours and are exhausted! It's a lose lose.

-Sometimes I eat nothing. Sometimes I eat everything! There is no medium. I can't be satisfied. Either I am starving. Or food sounds disgusting.

- I have said this before but it's not so much a bad day or good day. It's a bad hour or a good hour.

-Going to church is one of the hardest things I'll do during the week, and I hate that. Church shouldn't be hard! You shouldn't go to church and on the way there be thinking of ways you could be invisible and not see people. I hate that! Because I know it's depression! And I know it's not me. So I fight it. Because that part is NOT gonna win!

-Sometimes the hardest part is waking up at 730 am to take 12 pills and then 830 to take another pill that can't be taken with the other 12. And then remembering to take your other pill at 1pm and then take your next pill at 830pm and then 9 and a half at 10! Sometimes it's the biggest chore to have to do. I think all the time, "freak lets just skip out on all this today" I don't because I know that's stupid. And I learned from the mission you don't skip your meds! But some days taking all of them and lugging around your back pack with all your meds in there all day is the hardest part. I feel like my day is ran by alarms on my phone to take my medication.

-Sometimes the hardest part is seeing people's lives go on, and seeing how you still have a year to a year and a half of recovery and treatment. And it's so hard to not compair yourself to all your friends that are getting closer and closer to graduating, and you are over there like "hey, I have only completed 1 semester yippee!"

-Sometimes the hardest part is going to bed because you know that alarm is going off way to early.

-Sometimes it's getting up after your alarm has gone off 3 times. And you have never used a snooze button in your life. You have prided yourself in not snoozing ever. And now you crave to push it one more time, and you find yourself most days of the week jumping out of bed because your mom is calling you up to scriptures and you know you are going to be running late, again.

-Sometimes having lyme I wish that it would give me green bumps on my arms, or a green tongue. Or something on the outside of my body so people can see that how crappy I'm feeling on the inside is on the outside as well. I'll tell someone I'm sick and they will say "really? You don't look sick." And I'll want to point out the bags under my eyes, but even those can be hidden under glasses or if you wear them for so long they just become natural. So I shrug. Sometimes I just wish I could have something on the outside so people could see how real it is. Even cat green eyes would be cool. But that's a plus probably and there isn't really any positives of being a lyme patient. Just all you can eat prescriptions.
I can probably come up with a bunch more of "the worst things" about Lyme disease. But these seem to cover my basic thought process over how I have felt about the disease. And I still fell like I haven't done justice in explaining it, and again, that's because there aren't very many words that can describe how I'm feeling all the time. But these are a few.

-The Lyme Warrior

Sunday, January 11, 2015

Asthma and Lyme

This is a post that I wrote about a month ago, around the beginning of December. I didn't post it because I started reflecting a bunch more on my mission and how I should have been coming home around that time, so I didn't post this. But I think it's an interesting point of view to look at. How my Lyme Disease got to my lungs a little bit. And where I am not hacking up a lung constantly anymore. I do notice that when I play basketball and actually do start to work up a sweat I do have frequent Asthma attacks now, so here is this post, better late than never right? 

So if you read this blog, you are obviously familiar with the fact that I have Lyme Disease, but what many don't know is I also have another disease, not as serious as Lyme, but has been a part of my life since I was about 4 years old. It is called Reactive Airway is also known as Asthma. They are used interchangeably basically with Reactive Airway Disease you have a trigger that makes you have an asthma attack. My trigger is when I get a cold, or sickness of some sort my airways constrict and I get a nasty wheezing cough along with my sickness.

It has been easy for me to live with Asthma, I was able to get it under control from age 8 to age 13 by doing swim team in the summer, it opened up my lungs and I felt great. I always had flareups during winter and basketball season, but I could easily get a handle on it and keep my asthma in check.
On my mission the humidity was good for my lungs, I never had an attack, I had an inhaler close by but never had any use for it. Coming home and earlier this year getting diagnosed with Lyme I had that fear in the back of my mind of my asthma kicking in because I am so sick. It hasn't happened until this past month it finally hit.

Reactive Airway Disease and Lyme Disease have clashed together in my body this past week. Not only do I have flu like symptoms, and a fever and an early onset Alzhimers brain infested with spirochete (the Lyme bacteria), but now my lungs are reacting to the sickness and I am struggling to breath.

There are some I good things that have come with this, I have been all but forced to take desperate measures that I wouldn't have done otherwise... I have gotten a gym pass. No not to work out, I wish I could but I have absolutely no energy to work out. No, I got the pass so I can detox and sweat it all out in a sauna.

I have also tightened up on eating better. Having green smoothies for breakfast, all but cutting sugar out, and just all around trying every possible way to feel better. I may have to even go gluten free, and gosh darn it, I'll do just about anything now to feel better. I got to the point where I finally said "I can't handle both diseases!" I told myself that I can handle lungs being inflamed, OR I can handle an infested brain. But both is just killing me. And now that I have a portion of it under control and can breath a little bit better, I just know I don't want to get so run down by Lyme, that I can't breath and my asthma flares up again. Because it's just too much!

That is how I was feeling those couple weeks in December, I felt like I couldn't handle both. I was very overwhelmed. Things from the asthma aspect have obviously calmed down since then and I don't feel super run down, but for a little bit there I was very overwhelmed. 

Friday, January 2, 2015

A new year, a new goal

On my mission my mission president was big into goals, he had us sit down and think up some goals during the time we were on lock down on New Years Eve. I wrote out the best new years goals and I was going to accomplish them, I had 1 year left of serving so I was going to make the most out of it. I read my goals ever morning before starting study time, to help refresh and keep me focused on the things I wanted. I worked my butt off, I wanted to meet these goals, I felt like I would be very satisfied with myself and my work at the end of my mission and the end of the year if I worked towards these goals.

Then, of course, things changed. I came home 6 months later. So I read those goals from last year and think, yeah I did a good halfway job on my goals. I did alright. But it is strange how the only goal I have now is to get better. That is the big outcome that I want, and I know I will have made it to that destination when I can go back to school, and I have little things to help me and gauges that I have set so I can notice if I am getting better.

I want to be able to read books again. Not just school text books, but catch up on all the series of books that have come out since the mission. I know part of me not being able to read is Lyme, but it also is part of the depression too, I just don't want to.

Another thing that I am gauging myself on is my desire to listen to music. Again, it's the depression. I don't listen to music in my car when I drive, I don't have any desire to try and catch up on the music that I missed out on the  mission, I just really don't care. I didn't really listen to Christmas music. And sometimes I try to force myself to play at least something, but I just can't get back into it. So that will be something I will try and work towards.

Another thing that I have noticed get better a little bit is my anxiety towards socializing. It is not as bad as it used to be. Just getting together with my extended family used to make me really nervous, and I wouldn't even want to come out and be with them. Again, it's the depression, but I have worked on this one with my therapist and forced myself into to do those hard things, when the anxiety and brain are screaming "no way jose!" And I don't feel as nervous anymore. This is a big one that I need to fix because I can't be an antisocial bump on a log up at school.

There are many things that I have already been doing to help speed up the process of getting better that I will keep on doing through the new year. Detoxing is the biggest one. . I have talked about the Herxhimer Reactions, and how they are pretty much a couple days of me wanting to rip my eyelashes out, and detoxing is the way to try and somewhat prevent Herxing. And so with that I have gotten a gym pass, not to work out (I don't have a prayer of even trying to work out right now!), but to use the gyms sauna. It feels like I'm in South Carolina again, I sit in it for a half hour and sweat. I imagine all the dead Lyme Bacteria carcasses dripping out with the sweat. This half hour process, or any process of sweating leaves me pretty worn out. I don't know why I get so tired after I sweat but I assume it is once again, the ticks fault.

The ultimate goal of it all
Another Detox-ism that I have picked up that I never thought I would is the drinking of strange concoctions that may not always taste like a bag full of gummy worms, but are supposed to help with detoxification so I swallow it. I make green smoothies. I have one every morning, I will shove kale, spinach, cilantro, any kind of fruit I can find to try and mellow out the nasty taste of kale, and anything else that seems healthy. I drink that down for breakfast.

The most recent thing that I am still in a little bit of disbelief over is the juicing that has taken place. My mom got a juicing recipe book that has got me juicing almost every morning. Our Blendtec blendor gets a double work out in the morning as I juice and then drink a green smoothie. Juicing is interesting and it's not so much a flavor problem as it is a texture issue. See I don't mind the strange fruit and veggie combinations, it's just the pulp that is created from the blending process that sometimes makes it hard to swallow. But if you don't think of the strange combinations in the juice and just swallow, the juices really aren't that bad.

The last thing I have tried to do is eliminate sugar and gluten intake at all costs. This is a lot harder than it sounds. I am not pro at it, the sugar is easier than the gluten, but desperate times call for desperate measures.

All in all, these are my goals. And where they are much more different than last year, and I way more different than goals I would like to be setting towards school and an education and such, I have high hopes of these goals being met. It has been 4 months since I started treatment and was diagnosed. I was bit a year ago December 27th, but the symptoms really didn't start to kick in until mid January. Usually 18 months to 2 years of treatment is the average for a Lyme patient. If I can be well enough to go back to school by next year, that is 14 months. But heck, I'll take anything before that too. But getting better to get back to school, that's what I want, and I am going to meet my goals, I at least have motivation for that.

-The Lyme Warrior