What Hope Means to Me

Hope is such a short, but complex word.

When I think of hope, I think of fear. The two go hand in hand. We really only need hope if we’re scared and unhappy with the way things are. We hope for better health, more money, better relationships, a better job etc. When we need hope it’s because we aren’t content in our current life situation. But really what we need to work on is living in the moment and being satisfied with how things are. We are taught to think about the future and plan things. We need to start living day to day and moment to moment.

People in my life have told me that I need more hope to get through this illness. But I don’t really understand hope. It’s not something I feel I need. I don’t want to be sick, but I try to live day to day. I try to find the good moments in everyday, because no matter what’s going on in your life, there is always something good. Even the smallest of things, you just have to learn to notice them. I have had to learn to be content with where I’m at. Believe me, I haven’t always been like this. I used to struggle a lot with my life changing so drastically when I became severely sick. I have learned to let go and live despite what I’ve been handed. I still struggle with this sometimes, don’t get me wrong. It’s a work in progress, being one hundred percent content in your life.

If I were to have hope, it would be because I’m scared of never getting better. I’m not though. I believe we’re all on our own paths, and we are given struggles so that we can grow. I don’t know why I have been given the things I have, but I know there is a reason. I’m actually grateful for the struggles, because I know that I wouldn’t be the same person today. I wouldn’t have learned the many lessons I have, and the many more I will learn in the future.

A man I met recently told me this quote, “pain is inevitable, but suffering is optional.” It’s very true. Everyone is going to experience pain in their life, but we get to choose how we handle the situation. We get to choose if we are going to suffer, or if we are going to live despite the circumstance. I feel like hope plays into that too. If we choose to suffer, we need hope for a better future. But if we choose to live and be in the moment we don’t need hope. We don’t need hope because we are not scared. We are at peace with the position we are put in. Now this is hard, it’s something you have to work at. Being at ease when you’re given something not so pleasant to deal with is tough, but it’s possible.

So now that you’ve read this short summary of what I think of the word hope, what does it mean to you? When you really think of the word hope, what comes to mind? I offer you the challenge of really sitting and thinking about hope, and why you feel you need it.

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Thoughts from a Lyme Patient Pt. 2

So this is what I’ve been thinking about lately, I know it may be similar to previous posts, but I hope it’s still interesting.

The emotional things you go through with a chronic illness can be even harder then the physical symptoms…

The other day I cried for hours. I felt so horrible about myself. I just wanted everything to stop. I almost wanted to curl up in a ball and die. Sometimes I feel like I don’t have any more energy to keep fighting. Like there’s so many what ifs. I can’t think like that, but it’s so hard. I don’t know if I’ll ever get better. Why fight if I’m going to be sick for life or die anyways?

I remember watching a video and a man said he thinks Lyme disease is worse then prison. In prison you have a time of when you will get out. You know, okay I’ll be here for three years or if it will be a lifelong sentence. I honestly think it would be better if someone could say to me, you have however many years to live. I could have some kind of understanding of what’s going to happen to me. Right now I have no idea.

The other day I watched RENT with my mom. I love the story and lyrics in that musical. It’s about the AIDS epidemic which is very similar to the Lyme epidemic. If you haven’t watched it you should. My mom and I cried the whole movie. It felt good seeing a story similar to ours. Often we see Cancer on TV or in movies. Most of the time Cancer is a different experience, at least from what I’ve seen.

Last week everyone started school again. It’s so hard for me to watch everyone around me live their lives. I’ve talked about it before, but I think it’s the hardest part for me.

I want to watch my old friends having fun and living life, but it can make me feel so sad. I see their photos on social media and it sucks. Sometimes I think maybe it would be better if I didn’t see it, but then I crave to. It’s such a weird thing.

I’ve lost basically all my friends. Only one has stuck with me, Sara. She has been amazing and so supportive. Everyone else moved on with their lives. I know that they didn’t mean to hurt me or anything, but sometimes it still hurts to think about everything I have lost.

Sometimes I feel like I’ve lost myself. I feel un-human, worthless, and pathetic. I know that isn’t true, but when you can’t do anything, its hard to believe you’re important.

I see everyone around me succeeding at various things. People younger then me, driving, taking the SAT’s, and doing things I thought I would have done years ago.

This year I would have been a senior. I feel like I didn’t get any high school experience. I dropped out the middle of tenth grade and even when I was in school, I still hardly ever went.

Now I am going to get my GED. I’m hoping that will help me feel proud of something.

My parents say I should feel proud of what I’ve gone through, but it’s different to me. Yes I should, and I do; but I want to be proud of something happy. I don’t want to be known as the sick girl. I want to be proud of something I did, because I wanted to. Not something that I had to get through.

I want people to smile at me. Not cry and hope I’m not dying.

I realize I’ve also gained a lot of things. I’ve gained experience that a lot of people will probably never have. I’ve gained my best friend, Anais. She’s my massage/physical therapist and I wouldn’t have met her if  I wasn’t in so much pain.

This disease is really hard, but I have to stay strong and hope for better days. I have to focus on the things I am able to do, not the things I can’t. Someday I’ll look back and remember what I’ve gone through. I’ll remember how strong I am.

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Klinik St. George in Germany

I haven’t posted in a couple months, because I have been super super sick. This post is going to be about my experience at a clinic I went to in Germany. I went for a little over three weeks.

Before I went to Germany I was so sick. I was unresponsive, having seizures, couldn’t eat or drink, couldn’t get out of bed, super bad vertigo and neurological problems etc. I was going to the ER 1-2x a week. Now I am able to walk short distances, I’m able to eat and drink, I’m able to speak, I haven’t had a seizure, I can get out of bed at least to get food and go to the bathroom. Sometimes I’m even able to leave the house and hang out with friends. Like today I went to the swimming pool with my friend Anais. I can’t swim, but it was nice getting fresh air. I am definitely better. I still have a long way to go until I’m 100%, but I’m getting better instead of worse. I still have to detox and kill my co-infections. Co-infections are basically other diseases you can get with Lyme. I’m pretty sure that I don’t have Lyme though, because that’s what the doctors in Germany said. I still have most of my symptoms though. I’ve heard that the co-infections are usually what’s making you so ill. Anyways here’s what happened in Germany…

My mom and I went on June 11th 2016. Neither of us had ever been to Europe before. We took a direct flight from Denver to Munich. It was about a 10 hour flight. We then took a shuttle to the clinic which was about an hour away. The clinic is named Klinik St. George and it’s in Bad Aibling Germany.

When we got there one of the doctors met us and showed us our room. It was a nice room, but still looked like a hospital. It had buttons to press, so you could call for a nurse. It also had an IV stand and hospital beds. The kind that your feet can raise or you can lay on an incline. I remember us thinking that the pillows were huge too. We then went down to eat lunch. After lunch I was supposed to do tests, but they didn’t have my schedule yet. We didn’t do anything until the next day.

First day of treatment I did some tests and got IVs. We still had to wait for my schedule, so I didn’t start treatments until the afternoon. I had different treatments depending on the day.

Initial and Final Lab Controls

– Dark field blood analysis (when indicated by our physicians, this may also be substituted by other tests like VCS)

– CRS

– Infusions with Vitamin C, chelation, selenium, procaine, antibiotic

– Ozone Therapy (intravenous and rectally)

– Singulet Oxygen Therapy

– Laser Therapy (red and green)

– Magnetic Field Treatment

– Detox footbath

– Colon cleansing

– Systemic Whole Body Hyperthermia

– Detoxification Program

– Infusions/detoxification program are established by the physicians according to the individual situation of the patient.

The biggest treatment was Hyperthermia. They heated my body to 108º and the chamber I was in was about 148º. I had this done twice. This was the hardest treatment. I was put to sleep and hooked up to many machines, so they could monitor me. It takes about 7-8 hours. I don’t remember two days after that treatment. All I know is that I got really sick. I was unable to eat so they gave TPN, I couldn’t move, had bad vertigo, horrible nausea, pain, fatigue, and the second hyperthermia I was unresponsive. Both times I had it on Friday, so on Monday I would start the detoxing treatments. The second time I remember more. I actually woke up in the chamber after the treatment was done. A nurse helped me into a wheelchair and brought me to a recovery room. You stay in a recovery room for a night just to make sure you’re okay. I thought I was fine. I felt tired, but not overly sick. I watched Modern Family with my friend Kaitlyn. The next day I felt super sick though. Basically the same as the first one. I didn’t start detoxing until a bit later then I was supposed to, because I couldn’t make it out of bed, but I got a lot of IV’s. Through my whole time at the clinic I was almost always hooked up to some kind of IV. I’m so glad I got a port!

I stayed a third week, because of how sick I was. I got Plasmapheresis and Cell therapy. The Plasmapheresis was pretty intense too. Not as intense as Hyperthermia, but still not too fun. I was totally awake during it. They took out half my blood, maybe a bit more and cleaned it. They separate the blood into bad plasma and cells. Then they gave me new plasma in an IV with the rest of my good blood. I remember feeling faint, but 100x more. I looked at my arm and it was white and purple like a dead person. I wasn’t told what was going to happen before the treatment, so I didn’t know what to expect. Plus the doctors didn’t speak much English, so I couldn’t ask them questions. It’s supposed to take 4 hours, but mine took 7. They had to use my port and the needle was small. The machine beeped the entire 7 hours. Apparently it was still working though. It also kept stopping, so they had to give me a lot of heparin. I passed out a few times. It was super weird, I thought I was going to die at the end.When it was done I felt like the inside of my body was buzzing. I then went back to my room and ate, so that I would feel better. That night I went out to dinner with my mom, crazy! I wish I had done two, because it’s very good for detoxing.

The last week I also had two shots a day for 5 days. These were the Cell therapy shots. They were cells from sheep and pigs specific for different parts of my body. I don’t know much about it, but it’s supposed to help your body create new healthy cells. It lasts for a year.

The best part though, other then getting a bit better, was meeting so many people who understood me. The community was great. We were all going through something so hard. It didn’t matter if you had Cancer or Lyme. We all did very similar treatments. We all felt horrible. It was amazing! I wish I had that community here in Boulder. The doctors and nurses were nice too. My favorite doctor was Urs, he was very sweet and kind. The nurses I liked were Kristof, Mo, and Christine. They treated me like a person, not just another patient. I hope I never have to go back there, but at the same time I miss all the people. It get’s pretty isolating at home. I’ve lost all my friends, but two. I’m so grateful that Sara stayed with me through all of this. I also have Anais who is my massage/physical therapist, she is my best friend. I see her at least twice a week for a couple hours. I’m glad I get some kind of social interaction regularly. I wish I had Lyme friends I saw in person, but it’s actually looking up. I’ve talked to two girls who live in Boulder who have Lyme. Both would like to meet me. Hopefully I can become friends with them. I have Gabbi and some other Lyme friends who live in other states, but I want to be able to physically see people.

I know people wanted to know what my experience at the clinic was like, so I hope this helps. If you have more questions, you can comment and I’ll try to answer them. I didn’t go into too much detail, since I was there for 3 weeks. If I did this would have been a very long post.

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A New Beginning for a Lyme Disease Patient

The last few days has been going well for me. I’m so happy! I’m still sick, but I’m pushing myself to get back into my life as much as possible. I started going to a LGBTQ+ youth group on Wednesday nights. That has been fun. It’s nice to be around people again. Everyone was super nice and supportive. This coming week is Pride where I live. I’m volunteering to help when I can, that should be fun. I am also going to start going to my voice teacher again. She does voice rehabilitation, which I think would be good for me. I have major lung/breathing problems, so I’m hoping she can help.

Today I did a lot. I woke up at 7:00am and didn’t rest all day. I went to my GED orientation and took several pre-tests. This was so they could see where I need help. I tested in math and literature. I didn’t think I would do well on the math tests, but surprisingly I did nicely. I also got advanced on my writing and reading. The tests took a couple of hours. Luckily I finished early and I could leave when I was done. I’m proud of myself, because I have many brain issues due to my Lyme disease, but I still succeeded. Plus I haven’t been in school for a long time.

After I was done my mom and I went to lunch. That was really nice. We ate outside in the sun and talked. It felt like I was really living again. My mom kept saying that she would look at me and couldn’t believe I am able to do what I’ve been doing. After lunch we went to go get a gift for a friend we met in Germany. All of this took up most of the day.

I’m really tired, but I haven’t crashed yet. I’m trying to push myself as much as possible. I’ve been walking more, even though it’s hard. I didn’t use my wheelchair at all today, only my cane! It’s amazing how far I’ve come. I still have most of my symptoms, but they are less severe. I realized that once you’ve gone through so much, you get pretty tough. I think if I was like this a year ago, I would be in bed. Now that I’ve gone through much worse I have became stronger.

I hope this inspires other Lymies that you can get better. It may be slow, but you just have to stick it out. I know it’s really hard to do that sometimes, but keep hope. Like I said, I’m not 100% better, not even close, but I’m on my way to being healthy. It may take years, but eventually I’ll be symptom free.

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No Recognition with Lyme Disease

Hey everyone! I haven’t been able to work on my blog, because of how sick I have been. Today I have an idea though and wanted to write.

Lyme disease patients often don’t get recognition for their illness. Many people question if we are really sick, or if we are just making it up to get attention. Doctors question us, because they are not taught about Lyme disease. Family members and friends question us. This is the worst… When someone I care about and who should care about me questions me it makes me feel horrible.

Everyone has problems and I understand that. We all go through ups and downs in our lives. I try to be compassionate and caring for those who complain to me. I realize that their problem is probably very big for them, even if it wouldn’t be for me. It’s sometimes hard to listen to though… often when I talk about my illness people ignore me and move on to a different topic. I don’t get recognition for what I am going through. Most people don’t think that Lyme is that big of a deal. It is though… It has changed my life significantly. It’s annoying when someone complains the whole conversation and then ignores my life.

It makes me feel insignificant when people ignore my disease. It makes me want to cry, especially when it’s someone I care about. My family always tells me to be compassionate to others and I try. It’s sometimes hard though, when I feel like what they are complaining about is something I wish I could do. For example, school. Kids will complain about going to school. School is such a privilege though and I wish I could go. When I dropped out of school, some friends told me how lucky I was. Personally I don’t think I’m lucky to have to drop out of school, because I can’t function anymore. I loved school and wish that I could live a “normal” life. Another example, is when people are sick. I know being sick sucks. At the same time I wish that I could have a regular flu or cold. It seems so insignificant to me. I don’t mean to sound judgmental or rude, because like I said being sick sucks. I know that everyone has different ways of dealing with pain and illness too. Sometimes it makes you feel better to complain. Having the flu could be huge for someone else, while for me it is nothing. Everyone is different…

When my family tells me to be compassionate I understand where they are coming from. It’s just hard when I feel like I don’t get much compassion in return. Even though my family is around me all the time, they still don’t know what it’s like to be chronically ill. I’m so glad to have my Lyme friends who understand and who I can talk to.

I’m sorry if it seems like I’m just complaining in this article. This is how I’m feeling right now though.

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OCD, Anxiety, Paranoia, and Hallucinations with Lyme Disease

I live with OCD, anxiety, paranoia, and hallucinations. These are some of my symptoms from Lyme disease. Luckily I have never thought I was crazy, like some other patients. I do know that I can’t tell doctors about these symptoms. Unfortunately, most would think I have mental illnesses. I don’t, but it can seem like I do. For example, they may thing I have Schizophrenia, because of my hallucinations and paranoia. I know that other Lyme patients have been put in mental hospitals and even jail. We have to be careful on what we say and who we say it to.

What it’s like to live with these symptoms…

I used to love the outdoors. I loved sitting outside in the grass with bees everywhere. I would sit by a beehive and let the bees surround me. It was peaceful and relaxing. Now I’m anxious when I go outside. I don’t know why. Maybe it’s because of the dirt and germs. I don’t like touching anything without gloves or something covering my hand when I’m outside of my house. It freaks me out. I also don’t like sitting on dirty places. Everything has to be clean around me. I can’t walk around bare foot in the house. I always have to wear slippers or at least socks. I don’t like sitting on the couch or chairs in the same clothes I wear in bed. To me the clothes are contaminated and I don’t want to get my bed dirty. I’m getting better with this one though. I dislike when people sit or lay on my bed. It makes me anxious, because I think it makes my bed filled with germs. I don’t like touching other people sometimes, because it makes me feel very nervous. I think I’ll get germs. I also pick at my skin and scalp until I bleed. I feel an uncontrollable need to always pick, that I do it without thinking. These are my OCD symptoms.

My paranoia and hallucinations kind of go together. I have paranoia all the time. I always think that people are out to get me, to attack and murder me. Even though I know that I am safe, I can’t help thinking these things. I can’t sleep with the lights off, because of the hallucinations. It scares me not being able to see anything. I picture and hear people. Not good ones… ones that are scary and evil. They look scary… dripping with blood and mangled. I can’t watch anything scary on TV, because it makes my hallucinations and nightmares really bad. I can’t even watch Harry Potter or Psych without getting scared. Sometimes I have insomnia due to my hallucinations. Some rooms or places freak me out. I hate the bathroom. Maybe it’s, because there’s always bad things happing to people in them in movies. I can’t take a relaxing bath. I have to watch TV and my mom usually sits with me. I also hate showers. I picture people dead in them or that I’ll be stabbed. I have to pull the shower curtain, so that only the clear part is showing. I have to be able to see out. When I wash my face in the sink I get uneasy. I think that someone is going to attack me, since I can’t see anything. I also can’t sleep with someone in the same bed. I think they are dead or that they look scary.

Maybe these are just my Lyme symptoms or maybe they are triggered from my past. I used to get hit and kicked from a bully. She also forced me to make out with her. I don’t know if my past combined with my symptoms made me so fearful. I do know that lots of other Lyme patients also have these symptoms though, so who knows.

My anxiety comes from all of these things. They all mix together for me. Luckily I can still go outside with my family. I know some people who can’t leave their rooms. I don’t go out at night, because it scares me. Even in the day I don’t like being by myself. When I first got really sick, I was terrified about being alone. I had to learn to get used to it, because I’m often alone. Now I’m a bit better. I can handle these things. I don’t have panic attacks anymore, at least I haven’t in a while. I know that I have these symptoms and that it’s not real. Hopefully they get better and I can live more normally soon.

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Awkward Social Life with Lyme Disease

When people ask me how I am I often lie. I think that all chronically ill patients can relate. We always say “I’m okay” or “I’m fine.” We aren’t, but that’s what people want to hear. When people ask how you are, often it’s because they’re trying to be polite. Usually they don’t want to hear your long story about your symptoms and medical history. Whenever I’m out being social (which isn’t often) I want to act as normal as possible. I want everyone to treat me like they would anyone else. I don’t want to be negative and all about my disease. It’s hard though, cause my whole life revolves around my illness. I don’t know what small talk is anymore or what it’s like to be a “normal” teenager. Often I feel like an outcast. I feel different and uncertain on how I should act around others. I don’t know what my friends go through on a day-to-day basis. All I know is being sick. I don’t remember what it was like being healthy. So when someone tries to talk to me, often I don’t know what to talk about. If I mention my disease the conversation dies and it becomes super awkward.

Tomorrow is Prom… I’m going to try to go hang out with a group of people. Some of them I know, some I don’t. They are going to get ready while I hang out. Then we are going out to dinner and taking photos. I wonder how it’s going to go. I have been really sick lately, so I  will definitely need my cane, maybe even my wheelchair. It depends on if I go to all of it. I know that I can’t go to the actual dance, because of my neurological symptoms. My mom said that the restaurant will be crowded and loud too. That is not good for me, cause I’m very sensitive to light and sound. For example, when someone is talking at a normal volume, to me it sounds like yelling. Everyone will be nice, but sometimes it can be petty uncomfortable for me to be social. I wish that I could be social without it being difficult for me. I wish that I could do everything I wanted. Unfortunately, that’s not how it is. It’s okay though. Everything will fall into place like its supposed to eventually, including my social life. For now I have my family, my Lyme friends, and a few other friends supporting me. In the future I can make new healthy friends. All I need is to be myself. That’s always been one of my values. If people don’t know how to act around me that’s their problem. I should feel comfortable being me. I shouldn’t feel embarrassed or ashamed about being ill. I don’t need to worry about what other people are going to think. I need to live my life to the fullest.

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The Good Side of Technology for Lyme Disease Patients

I used to be really bad with technology. I know many people probably don’t believe that, because teenagers are supposed  to be really good at it. I however, hardly knew how to use my email or the internet. Now that I have been really ill, I have learned to used technology pretty well. I am definitely not an expert, but I’ve come a far ways.

I used to think that media was bad. I still think that it can be bad in certain situations or for certain people. For me though it has helped me so much. Basically my whole life is online and through the internet. Most of my friends are on Facebook, Instagram and other social media sites. I also text and Skype my friends. If there was no internet or these social media sites, I would feel very alone and isolated. The way that I see what is going on in the world and to people around me is also through these sites. I am very lucky and thankful to be able to use technology in this way. I think that it is amazing that I can have a friendship with someone across the country, and even across the world. It’s an interesting way of living. I don’t go out that often, so this has become my world. Before I had face-to-face conversations with people; now I mostly text, call, or Skype. There is a bad side to social media though. It’s hard for me to see my friends go on with their lives. It’s hard to see people out in the real world living. For me, I get more good things out of it than bad. I still wish to be able to have a social life, but this is at least something. I feel grateful that I get to talk to other teens going through the same thing I am. This is how I stay connected to life.

I just recently got involved with all of the Lyme disease sites. I remember before I felt very depressed and isolated. When I met my first friend online, life instantly got better. I remember smiling for the first time in months. I was so exited. Now I talk to her everyday and we even watch TV together through Google Hangouts! It’s cool, because I have so much in common with her. I feel like with all my Lyme friends (not just her) we have an instant connection. We all know what it’s like to be chronically ill. We’re strangers, yet the first things we ask are, “how are you?” and “what treatments are you doing?” You know that you are going to be supported by this person.

I think that there is a time and place for technology. For chronically ill patients it can be very helpful in keeping us from feeling alone.

 

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Thoughts from a Lyme Patient

Whenever I go back to my old school and see all the kids laughing and hanging out, I wonder what it would be like to be one of them. When I go see my friends perform, I wonder what it would be like to be on stage with them. I guess I will never know what it’s like to be a “normal” kid in high school.  That’s okay though. I get an experience most people don’t get. Yes it can be lonely sometimes, but I have also met people I wouldn’t have. I have met my physical therapist who is now one of my friends. I have met my Lyme friends. I have met doctors and nurses; some good, some bad. I have gotten to see how people react to chronic illness and disabilities. I have seen how awkward and ignorant people can be with these two things. I have seen that as humans we don’t like to see each other suffer, so often we don’t know how to respond to illness.

I have learned about myself. I have learned how strong I am. That even if I think I am at my limit, I can continue on. I have learned who in my life matters to me, who cares about me, who knows how to deal with my chronic illness. I have learned how to let go and be okay with asking for help. I have seen fellow Lyme warriors who have gone through so much, yet they’re not giving up. I have learned how important love, compassion, patience, empathy, and kindness are. These things can make all the difference when going through hard times. I accept my illness and I’m okay with where I am. Yes I want to get better, but I know that everyone has struggles and this is one of mine. It’s okay to need help. It’s okay to be vulnerable. I used to think that I always had to be strong, and pretend that everything was okay. Now I know that it is okay to cry and be upset. But after you breakdown you have to pick yourself back up and keep going. I think that a lot of people think that being strong means that you can never show weakness. To me being strong is when you can be vulnerable and then keep living with hope. I think that it’s brave when people show emotions that others consider weak. I recently have been crying more in front of my family. I realized it’s good to be able to breakdown in front of people who care about you. It’s important to trust that they will be there for you and comfort you. I’ve also started being more honest with people about what is going on with me. I used to think that I shouldn’t share things about my disease, because it makes people uncomfortable. Now I understand that if I’m not honest, there is no way for people to know how I am. I want to educate people on Lyme disease and the only way to do that is to talk about it.

 

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Yesterdays Good Day with Lyme Disease

Yesterday I had a fashion show. It was very fun, but tiring. I woke up at 5:00am and had to be there at 8:15am. I didn’t feel well, but decided to go anyways, since I was exited. I had to stand in heels for about 3 hours and walk the runway multiple times. My mom said she was worried that I was going to fall over, since I had to walk so much. Luckily I didn’t fall or get too sick. It was also very loud which is hard for me, because I’m very sensitive to loud sound. Even though it was hard, it was very rewarding. I feel proud of myself for being able to get through that successfully. By the way, walking is a rare thing for me. My legs tend to stop working and I collapse unless someone is holding on to me.

After my fashion show we went to go pick up my mobility scooter (wheelchair). I’m exited I got one, because now I can get out of the house more, especially this summer. Last summer I wasn’t able to leave the house much with my family. I’m hoping now that I have one I can go downtown with them while they walk around. Usually I can’t walk much, especially for hours. Now that I have my own wheelchair I’ll be able to go out even when I’m feeling sick. I have been using my cane, but that is still tiring for me. Also when my legs stop working, it is hard for me to walk using a cane. Anyways I’m exited to have more freedom now!

We then drove to a different area of Denver to get lunch. We went to this small Mexican restaurant. The food was really good and we got to sit outside, since it was warm out. By this time I was very tired and we headed home.

When we got home I took a nap. When I woke up from my nap I was even more tired then before I decided to lie down. I never understand how that works. At around 7:00pm my mom, dad, and I went to an Indian restaurant for dinner. We go every Sunday. It is my favorite kind of food, and I tend to eat more there. We talked about the fashion show, my wheelchair, and other things. It was nice having dinner with just my parents. My sister and brother decided to stay home and eat pizza. When we were done we went home for the night. I went straight to bed, hoping to not feel too sick the next day. Luckily today I am not too bad. I am in pain and tired, but it was a long day for me and it went well. I’m hoping to have more good days like this in the future.

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Looking “Normal” with Lyme Disease

A lot of people are confused when they see my photos on Facebook. My mom has talked about how she will be talking to someone and they think I am healthy, because I look fine. The truth is, is that when you are chronically ill, you have to push yourself and do something fun every once in a while. When I go out and do my modeling and acting, it takes every ounce of strength from my body. I get really sick afterwards, but it is worth it, because I get to have one fun day. I get to feel human and worth something. About a month ago I had a photoshoot. Afterwards I was so tired and sore I couldn’t move. My back hurt an insane amount, that I  couldn’t sleep. But to me, all of the pain is worth it.

Often when I tell people that I have Lyme, they say, “oh, but you’re so pretty” or “well you’re still beautiful.” That doesn’t make me feel any better. Compliments are nice, but not when you just told someone how sick you are. It makes me feel like my disease is invalid. I know they are just trying to be nice, but it actually makes me feel worse. So if you ever encounter someone with an invisible illness, never say “at least you still look beautiful” or “at least it’s not Cancer.” When you say that, it makes it seem like my disease doesn’t matter. Like it’s not bad enough to be validated. Just because I don’t look sick, doesn’t mean I’m not suffering. What does sick even look like?

The best things you can say to a person with an invisible illness are, “I believe you” or “tell me about it.” When people say something like this, it makes me feel validated. It makes me feel less crazy. This is very important for a person with an invisible illness. When people ask about my disease and want to be educated, it makes me feel amazing. It makes me feel like they care about me. If you care about me, I also want you to care about the disease that is effecting my life so much. I think that most patients with an invisible illness can relate to having to deal with people not understanding how you can be so sick, yet look so “normal.”

It’s hard to be so sick and look “normal.” People always think you are faking being ill. I am really sensitive, so I can’t take a lot of medications. Some people with Lyme have a port, a picc line, or other things that signal that they are somehow sick. I can’t do any of that. Which in some ways is good, because all of those treatments are hard. But it can also be frustrating not having anything that signals I am ill.

I have to use a cane or wheelchair sometimes, because I can’t walk far distances. We have a handicap placard for our car, so that I don’t have to walk far. I always get confused faces when people see my family get out of our car all walking. I’ve talked to other Lyme patients about being in a wheelchair. I’ve found that a lot of people think that being in a wheelchair is black or white. Either you can’t walk at all, or you can walk perfectly fine. That is not true. Many people in wheelchairs are in them, because they can’t walk far distances.

When I go out, it takes me a while to look healthy. I put on regular clothes (not my PJ’s), I put on makeup, and do my hair. Now I don’t always do this, but when I want to look healthy I do. When I am going to modeling it usually takes me two hours to get ready. That’s crazy! I think that the hardest and most tiring part for me is getting ready. Taking a shower is a lot of work for me. My makeup, to cover up dark circles and dull skin from not sleeping. When I don’t leave my house I am constantly in my pajamas, no makeup, my hair in a bun. I usually don’t take many showers either, because like I said it’s a lot of work. These are some of the things people don’t know. When I am around people I try to be enthusiastic and happy. No one except my family sees me at my worse. I fake being healthy when I go places, because it’s easier. These are some of the struggles I deal with having an invisible illness.

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Hard to Have Friends with Lyme Disease

Lately I’ve been questioning my friendships. I know that my friends care for me, but it’s hard to have a chronically ill friend. Especially junior year of high school. I understand that my friends have their own lives. They have homework and clubs. I’m happy that they are having fun and enjoying life. It’s hard to be the one left behind though. It’s hard to watch everyone go on with their lives, while you lie in bed. I hardly talk to any of my friends, that I don’t know if I can still consider them friends. I have one friend that use to come over often. She said when I first got sick, that she wanted to be there for me, like her friend had been there for her when she had Cancer. It’s different though… My friend was well within a year and didn’t have to drop out of school. I’ve been out of school for almost a year and a half and there’s not a cure for me. Recently she has been really busy though, so I haven’t seen her. She texts me that she should come over or that she has to come over. I don’t want to be an obligation. I want friends who want to come over, not ones who feel they have to. I’d rather have no friends, then have ones that think of our friendship as an obligation or pity me. Now I don’t know what is going on for my friends, so I can’t speak for them. This is just how it feels on my side. I know it’s hard to be friends with me, because I can’t do much and can’t commit to hanging out. I wish that my friends texted me though. That would make my day. A simple text letting me know they are still thinking about me. I wish they invited me to do things, knowing that I may say no. Sometimes I feel forgotten, like I don’t exist anymore. It feels like everyone has moved on and forgotten about me. I think part of it, is that most people don’t know what I’m going through and how sick I truly am. I wish people understood. Even my closest friends and family don’t get my illness. I guess it’s hard to keep relationships going, that’s just how it is. I’m hoping to meet more Lyme friends, who get what I’m going through. I hope that this helps people know some of my thoughts and feelings. Thanks for reading!

P.S I didn’t know how to end this article. :-p

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What It’s like to Live with Lyme Disease

Most people around me don’t know what it’s like to have a chronic illness with no cure. They don’t know what it’s like to be severely sick, but have people tell you you’re crazy and making it up. To tell people you have Lyme and for them to not think anything of it. To lie in bed all day with crazy symptoms feeling like you’re slowly dying. And to be honest, you are. Most people don’t know anything about Lyme disease, but they especially don’t know that it is fatal. The hardest part about having a chronic disease that no one believes in, is you hardly ever get empathy or support. This sounds horrible, but sometimes I wish I had Cancer. Whenever someone says they have Cancer, everyone always wants to help them and they get so much empathy. I know people who have had Cancer and it’s a totally different experience then what I’m having. Some of them were better within a year. They had support. People believed them. I know that many Cancers are not curable and that it is a horrible disease, but Cancer gets way more attention and empathy. The crazy thing is, there are thousands maybe millions of people with Lyme in the world, yet no one knows much about it.

I remember when I started getting really sick. I couldn’t take showers by myself, couldn’t get a glass of water, sometimes I couldn’t walk down the stairs without help. I felt useless…

Most people don’t know what the symptoms of Lyme are… Now the complicated part is that everyone is different. We all have different symptoms due to different co-infections. Also it depends on how long you’ve had Lyme and how strong your body is. I’ve had Lyme for 9 years and I have a very low immune system.

I probably left some stuff out, because honestly I forget about some of my symptoms. When you have so many things going on for so long you get used to it.

I wrote this so that more people know what it’s like to have Lyme and what some of the symptoms are. Crazy thing is, I’m pretty well off. There are a lot of people who have it worse then I do.

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My Near-Death Experience with Lyme Disease

Hey, so I was just talking with a girl who is trying to raise awareness about Lyme disease. I was telling her my story and my death experience from a little over a year ago came up. I haven’t shared this story with many people but thought that maybe people would be interested in hearing about that night.

It was just a normal night. My aunt was coming in to town so that she could help out. I had gone to bed and was just expecting to wake up and see my aunt in the morning. While trying to fall asleep I started feeling really nauseous, so I decided that I would go downstairs to eat something. I went downstairs and everyone was still awake. My brother, sister, mom, and aunt were talking. My dad had left earlier that day to go on a business trip. I was talking and eating, but not feeling any better. I started laughing for no reason and couldn’t stop. I started feeling airy (like I was a ghost). It felt like I was tiny and I was inside my brain. It was like I was a robot and my brain was the control room. Everything around me was bigger and it felt like I couldn’t physically touch it. Like I said I felt like I was inside a control room in my brain and looking through glass. I don’t remember this, but my mom said that I got really weak and had to be helped up the stairs. I got in my bed and continued to feel weird. While lying there I could hear my aunt and mom speaking. I couldn’t speak back to them though, and couldn’t move any of my body. I was trying to tell them to take me to the hospital, but couldn’t get the words out. It was like my brain couldn’t signal my mouth to actually say any words. Then I felt like I had left the earth… I pictured myself holding on to a rope in a deep black tunnel. If I had let go I would have died, at least that’s what I thought. Then I pictured a different scene. I was standing in a forest that had a lake. It was night out. I was standing by a tree looking out into the lake. There in the lake I saw my dead body. I was dressed in a white dress and floating in the water. I turned to the right and I saw white light. It was so bright I could hardly keep my eyes all the way open. I didn’t know what was happening, but decided to pray. I’m not religious, but I thought why not? It couldn’t hurt anything… So I prayed that I wouldn’t die. Now this was a game changer for me, because when this happened I was suicidal. I realized when going through these different scenes that I didn’t want to die. I thought about all the things I want to do in my life, all my dreams. Then I heard a voice. It was a deep mans voice. I never saw anyone; I only heard the voice. I don’t remember exactly what he said, but something along the lines of I wouldn’t die. I think that this happened to me to show me that my life is important. That even though life is hard sometimes, I couldn’t give up just yet. I’m so glad that that happened, because I haven’t been suicidal since.

Anyways, after that, I came back and saw my aunt and mom. Then I went back to the other world or whatever it was; I guess I will never know. This happened three times. Finally, my mom decided to take me to the hospital. I still couldn’t speak or move. My mom had my next-door neighbor carry me to the car. When we got to the emergency room a few nurses came out with a wheelchair to help get me out of the car. I still couldn’t talk to them but could understand what they were saying. They put me in the wheelchair and took me to one of the emergency rooms. My mom asked me questions… I blinked once for yes and twice for no. Apparently, I was crying through all of this, but I didn’t even notice. The doctor came in and pinched me really hard in different places to see if I could feel it. When I was finally able to talk I yelled at him. I mean I couldn’t speak or move! How was I supposed to tell him to stop? I had to spend the rest of the night there. They told me that I was fine and asked me to talk to one of their Psychiatric people. I told them they didn’t need to worry. I wouldn’t hurt myself or anyone else. The worst part though was how conceding all of the doctors and nurses were. They said I just had a panic attack. They made me feel like I was crazy, but I knew that I wasn’t. I lay in the hospital bed for the rest of the night. During all of the craziness, my dad had come back from the airport to be with me. Funny thing is I even asked my mom if I could go to school the next day… She said no of course.

I’ll always remember that night. I’ll remember that even if I’m having a rough day and don’t feel like living on, I have things to live for. I have to pick myself back up and keep going. That is my story of what I call my near-death experience. I will never know what truly happened, but all I know is that it taught me a big lesson. Don’t give up!

 

 

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Spring Break with Lyme Disease

Spring beak just started for my siblings. My mom, brother, and sister all went to South Carolina for the week. My dad and I are staying home, since I can’t travel. I don’t feel that left out, but it still kind of sucks to not be able to leave my house much. On my good days I can go out and see a movie or get food, but most of my time is spent resting in bed. I’ve felt pretty isolated, but recently I met a new friend who also has Lyme. She and I text a lot and we’ve even watched TV together through Google Hangouts. It has been nice talking to someone who understands what I am going through. I try and stay positive and hope that the future will be better. Sometimes it’s hard though… Sometimes I do think having Lyme sucks and I wish I could me “normal.” Sometimes I wish I could hang out with friends, workout, go to school… But I realize that is not the path that life wanted to take me on. I have to accept that, learn to enjoy the little things. Like having an appetite or having a little bit more energy. I’ve learned to let go a lot. I’ve learned that family and health are the most important things. I continue to push through the hard days hoping one day this will all be in the past. But for now I will rest, take my medication, and continue on with this journey.

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