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4.14.18 Life with Chronic Illness

I have Hypermobile Ehlers-Danlos Syndrome. It makes my joints dislocate from the smallest motions. Other symptoms come with it, but those are my main problems. If you saw me, you wouldn’t be able to tell that I’m sick except for when I’m wearing slings. Chronic illnesses aren’t always apparent from the outside. Some people even think that I’m faking my illness because there are no visible signs besides when I have a dislocation. I think that is the hardest part of my health problems, the doubt people have. Yesterday I saw a post about how people think that we are faking our illnesses, but we are actually faking our wellness. Meaning, we pretend that we’re okay sometimes, because the pain is embarrassing and we don’t want to burden people with it.

Pain is difficult. Everyone has their own tolerance. While most people would feel a lot of pain from stubbing their toe or hitting their knee on something, I might not even notice it happening to me because I’m used to different pain. I’m used to coughing my shoulder out of socket. I’m used to putting too much weight on my leg to the point that my hip dislocates. I’ve had four shoulder surgeries in the past two years; three on my right shoulder and one on my left. I have cadaver tissue, screws, anchors, and other things in my shoulders. Now, every dislocation pulls all the hardware in my shoulders and sometimes stretches, rips, or moves them.

Most days, I’m in a lot of pain, but I won’t tell anyone. I won’t tell my mom, my doctors, or even my best friend. I know it causes my loved ones pain to know I’m hurting so much, so I fake it. I smile, I laugh, I go on with life, because I’m tired of being a burden. If I do talk about pain, I minimize it and make it sound nowhere near as bad as it truly is. I hate being dishonest and leaving out the truth, but I do it to protect people I love from pain. I’d rather carry the burden alone than burden others with the thought while still carry the physical pain alone.

The pain often makes me feel nauseous, which makes eating difficult. If I’m not feeling nauseous at the time, then I usually eat a lot because I know that later I won’t be able to eat because the pain will get worse.

I have to sleep on my back because if I lay on my sides my shoulders will dislocate and my hips get really sore. It’s hard to fall asleep while only being able to lay on my back. It’s hard to fall asleep while in so much pain. When I do fall asleep, I always wake up in the night from rolling onto my sides in my sleep. I either wake up from a dislocation or just pain from the weight being on my already painful shoulders. Once I wake up from pain, I usually can’t fall back asleep for a few hours at least.

Ever since my body has experienced these issues, I’ve had to give up many activities, dreams, and joys in my life. I was an archer. I loved biking, running, walking, and hiking. I loved climbing trees and sitting in them while reading. I loved tossing a football with my brother. I loved soccer and wished I could play on a team again. Now, I can’t even tie my shoes, cut my food, or brush my hair. I wanted to be a special ed teacher or coordinator. I wanted to be a personal care assistant. Now, I can’t help people physically and I need my own personal care assistant. My dreams were crushed. I nearly gave up on my future. I still struggle with it.

My mom has been my rock. She takes care of me and is pretty much my personal care assistant (bathes me, helps me use the restroom, and every other need). She has worked with people with disabilities and has a heart for them like I do. One thing that my mom has told me since I was little is, “People with with disabilities aren’t really ‘disabled’, they just have different abilities than other people.” This morning, I was telling my mom how upset I am that I can’t help people with disabilities. She said, “Well you have a mouth don’t you?” What she meant by that is that I have my words that can help.

I have read many blogs, social media posts, and books about people who have gone through medical or mental health struggles. Every blog, post, and book has helped me feel less alone in my struggle and has motivated me to keep going. If I can help just one person realize that there is hope, peace, and purpose in their struggles, then this is all worth it to me.

I’ve struggled with depression, anxiety, ptsd, and insomnia. Managing both mental illness and chronic illness has been very difficult, but they go hand-in-hand with each other(even though my mental health issues started first). Sometimes my depression and anxiety make it hard for me to get out of bed. Sometimes my pain makes it hard for me to get out of bed. On days where it is both I really struggle.

I never want to sound like I’m complaining about my medical and mental struggles, because I am grateful for them, but I hope that explaining my struggles could help others too. It may sound weird that I’m grateful for my chronic and mental illnesses, but I really am. I have become stronger mentally and spiritually. I have learned so much and have gotten a new perspective on life and my purpose.

I know now that my pain has meaning and purpose even though I might not always see it at the time. I have hope for my future even if my chronic illness continues to get worse. I have even more passion to help and love people than I did before. I have new hopes and dreams that still give me the opportunity to work in the same general area that I have always wanted to work in.

I hope to become a psychology professor (get my PhD). I want to be able to teach people about psychology and also advocate for mental health. I hope to get married and become a mom some day (although I’ll most likely have to adopt which I would love). I hope to finish my poetry book and get it published. I hope to possibly write a book or continue with this blog more. I hope to love the forgotten and lost. I hope to share the hope I have with every person I encounter.

My mental and medical struggles don’t get to control me or my dreams and future. They affect each area of my life, but they don’t get the control. My body is simply a vessel, not who I am.

He replied, “Because you have so little faith. Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there,’ and it will move. Nothing will be impossible for you.”   -Matthew 17:20

Thank you for taking the time to read my blog, it means a lot to me. Feel free to message me, share this, or leave comments. I am open to talk to anyone about anything or pray for or with any of you, so don’t be afraid to contact me.

National Suicide Prevention Hotline: 1-800-273-8255

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Impact of Music

I asked what my friends(on Facebook, Instagram, and Snapchat) would like me to blog about, and the majority of the responses were about music. Some people asked me what music I like, others asked why I love music so much, and a few people asked specifically why I love Twenty One Pilots. I’m going to try to cover all three of the requested in this one blog, so BARE(haha) with me!

Alright, let’s start with the easiest one! I like almost every genre of music, but I love pop, contemporary, worship, and just so many more! I would say some of my favorite bands/artists are Twenty One Pilots, Johnny Cash, Vesperteen, Linkin Park, AJR, Rend Collective, Jon Bellion, Skillet, Fall Out Boy, Panic! At The Disco, Paramore, Sia, and Ed Sheeran. That’s only a few of my favorites and I’m sure I forgot some. Since I am an individual person I obviously don’t agree with every topic these artists or bands talk about. In my opinion, you can like someone’s music without agreeing with all of the lyrics or beliefs of them. There are songs I don’t like by these musicians, and songs I love, but it’s all based on my own beliefs and morals.

The next most popular topic people asked me about is why I love music so much. I believe music is a beautiful thing. Music can reflect our thoughts, feelings, and culture. Music has helped me realize I’m not alone in struggles or really anything. Music can create communities and help people get to know each other. I believe God gave us music to enjoy, but also to worship Him through. He’s definitely used more “worldly” or “non-Christian” bands and artists to help me through tough times. God doesn’t have limitations of what He can use to help us(within reason and healthiness of course!). Music is such a powerful and helpful thing that I am so thankful for.

As anyone can tell from my clothing, jewelry, posters, or even way of speaking(ahem, many song lyrics used in conversations), I love Twenty One Pilots. Many people think it’s just me being a weird, nerdy fangirl, but it is so much more than that. A lot of my friends, family, and followers know that I’ve struggled with depression, anxiety, suicidal thoughts, self harm, and other hardships these past few years. My aunt brought my sister, my sister’s friend, and I to a Twenty One Pilots concert one night. I hadn’t really listened to much of their music, but I wanted to experience another concert because I love concerts. At the time I was at one of my worst periods of my life. I felt alone, worthless, and just hated myself a lot. We got to the concert and I was excited because I wanted to have fun and be able to distract myself from my problems for a few hours. Fortunately, I had fun. Also fortunately, I wasn’t distracted from my problems. In fact, my problems were shoved in my face and I was forced to acknowledge the fact that I needed help. Twenty One Pilots have lyrics that Tyler Joseph(the singer/songwriter of the band) wrote when he was feeling the same way I was feeling at that time in my life. His lyrics showed me that I’m not alone, there is hope, and it’s okay to have feelings and thoughts that I might not see others experience. At the end of the every concert, Tyler Joseph says “stay alive”. He sometimes varies it at shows but always involves the “stay alive”. At the concert I went to, he said, “stay alive everybody, it’s worth it”. As a very suicidal, depressed, hopeless person, what he said gave me the hope I had been looking for. I got home and knew I could never end my life because I am here for a reason. I looked up the lyrics to all of their songs over the next few weeks and fell in love with the lyrics. These lyrics got me through my darkest moments and continue to help me with my depression and anxiety. I believe God did this all on purpose. He got me to go to that concert to help me find hope. He used this band to save me and keep me alive because He is not done with me. My life is not my own, and I am alive for Him and only because of His provision.

I want to clarify that I give all the credit to God with this. He is the One who saved me and is saving me. He may have used the band to help me see that, but God still gets all the glory in this. My relationship with God is more important to me than loving a band, and balance is obviously very necessary. I love God. I love Twenty One Pilots. But most of all, I love that God has always provided for me and given me hope when I thought it was lost forever.

Music is a very important thing to me and I believe it is a way that I’ve felt most connected to God.

Stay alive.

Thank you so much for reading my posts and supporting me! I will try to be more consistent in blogging. Feel free to comment topics you want to hear me talk about, or message me if you need someone to talk to!

-Amelia Jo

Brave

When I hear the word brave I automatically think of my grandma. That might seem silly to people who didn’t know her. Most people think of old people as weak and incapable, when in fact they are SO much more. The Bible actually talks about this quite a bit. For example, Job 12:12 says, “Wisdom is with the aged, and understanding in length of days.” One of my favorite things is just sitting and talking to elderly people. They have been around longer and had more experiences than me, made more mistakes I can learn from, and it is also just so amusing sometimes. However, it wasn’t by my grandma’s experiences through her life or life lessons she gave me that made her stand out as the bravest person I know. All my life I’ve been a pretty shy person because of anxiety, but even being around my grandma empowered me to speak my mind. She was not someone to hold their tongue; she said what she wanted, when she wanted. This is one of the reasons that I have always looked up to her. To have the confidence to say what you want is so incredible! As someone who has always struggled with self worth it’s always been a goal for me to speak up more about things I’m passionate about. I think one of the most powerful things we have is words. I wrote a blog post about words already, I think it’s so important to realize the affect our words are though. One of my favorite books is Speak Love by Annie Downs. I’ve met Annie a few times and it’s great to see her passion on this subject.

Labeling my grandma as the most brave person I have ever known means I obviously have many reasons for it. The second main reason I admire my grandma’s bravery is her attitude while she had cancer. Being in constant physical pain is not easy at all as I know from experience. Being in pain is an easy excuse for being crabby or just shutting people out, but for my grandma it was the opposite. The amount of nurses who have talked about how great it is that my grandma is so happy during the pain is amazing. I’m not sure how she was doing on the inside all the time, but she wouldn’t complain during chemo or appointments for the most part.

For Christmas this year my sister, Grace, bought me a necklace from lovishly.com and it says “be brave.” I don’t consider myself a brave person. I like to be by myself and keep my thoughts and feelings to myself usually. This year has changed a lot for me, especially in the area of bravery. I realized that I have confidence in being a daughter of the Creator of the universe. I have the joy of the Lord in me, and all that matters is that I live for Him and share His love. Along with these realizations has come a voice I didn’t have. I learned how to stand up for myself, speak love, and really just share my struggles when I know it can help others or if I need help. I have more confidence in who I am and that is key to being brave. So many times I have wanted to give up, but I remind myself to be brave. Being brave is definitely a difficult things during tough times. It’s easier to give up or keep to myself, but admitting my struggle and then pressing on has been essential to my mental health.

Please don’t get me wrong, I have said and will say unkind things and so has my grandma. I want to build people up with my words, not tear them down, and the only way I can do that is by being brave. There is a fine line of being too outspoken versus too quiet.

If I’ve learned anything from Annie Downs, it’s that my words matter.

Letter To Myself(and anyone struggling)

Amelia Jo,

You are probably wondering why I’m writing(well typing because my arms still aren’t great) to you. I just want to address something that is hurting you. Your depression and anxiety. Yeah, no more ignoring them. They’re really affecting you, so stop pretending they don’t exist. Admit that they are hurting your soul and life in general. Pay attention to them, acknowledge their existence. However, don’t give in to them. They will lie to you. They want to hurt you. They want to separate you from God’s joy. Grab ahold of them. Shake them. Make them listen to you. Tell them that you are a daughter of the One True King! Tell them that you have the joy of the Lord, and they aren’t allowed to bring you down anymore! Show them that they aren’t welcome here; kick them out! Declare truth over those lies! Stop letting them shove you around! It’s not okay at all! Remember, YOU ARE NOT ALONE. You have people who love you and want you to love yourself and be happy! Now knock it off! Get off your butt, and do something about it! You are loved. You are beautiful. You are powerful. You are amazing. All because Christ gave His life for yours! Please stop hating yourself. Treat yourself right. You are a temple.

I love you.

Go kick butt.

Amelia Jo

 

12.15.16 Refocus

“I will give them a heart to know me, that I am the Lord. They will be my people, and I will be their God, for they will turn to me with all their heart.” -Jeremiah 24:7

Jeremiah 24 is about the two baskets of figs. One basket had good figs, the other had very bad inedible figs. God used the good figs to represent the exiles from Judah whom He sent to Babylon. He used the bad figs to represent the king of Judah at the time named Zedekiah and his people and officials. God said that He would bring justice to what the king and his people had done and that He would “send the sword, famine and plague against them until they are destroyed from the land I gave to them and their ancestors.” However, with the good figs, God promised to return them to Himself and that they would be taken care of.

This afternoon while taking a shower, I was thinking. I was reflecting on this past year, what I accomplished in it and what I wish I could’ve done differently. That got me thinking about next year and what I would like to achieve. I realized that the problem was that I wasn’t turning to God for direction. I wasn’t asking Him to work in me. I wasn’t thinking about what really matters. I began praying. Praying that He would show me what He wants from me. I asked God to change me and the way I think. I asked Him to help me to give my whole being to Him and make me His vessel. After I got out of the shower, I got changed into sweatpants and a t-shirt. I looked at the huge scar on my shoulder from my most recent surgery. All my life I have had older sisters who are drop dead gorgeous. Accepting my body and overall who I am is something that I have struggled with for a long time. But when I looked in the mirror this time, it was different. I saw someone else. I saw a gorgeous, confident, strong daughter of God. I didn’t recognize myself. All of a sudden I felt God’s comfort surrounding me. I started crying. I had realized that I am more than I think. I can be strong, beautiful inside and out, and confident.

This experience was a wake up call to me. I put myself down daily, while I could be so close to God and accepting of myself. I got this desire in me to dig into who I am because of what He did for me. I have the opportunity to have an amazing relationship with my Creator, and I wasn’t putting forth effort to. Now, I have the spark in me to really feel His love and learn to see myself how He sees me.

The new year is approaching, and what an awesome timing opportunity for all of this to happen. Goal setting has always been something to motivate me, and I plan to change my lifestyle this upcoming year. A good family friend who I’ve known for about five years helped me set goals last year. She does it by looking at the different aspects of life. All of my goals can change as I continue to pray and ask God to guide me in everything.

Here is my rough draft of goals for 2017:

Spiritual-

  • I want to try to pray and look for answers in His Word before I make decisions(Philippians 4:6-7)
  • I want to try to worship God in everything I do and really make an effort to pray and read the Bible more to grow closer to God(1 Chronicles 16:11)

Physical-

  • I want to be able to write without pain by the end of the year
  • I want to exercise regularly once I am able to(1 Corinthians 6:19-20)
  • I want to ease myself into eating more healthy foods and get all the nutrients I need(1 Corinthians 10:31)

Mental-

  • I want to focus on really connecting everything back to God(John 3:30)
  • I want to be confident in myself because of how God sees me to the point where I’m not scared as much of how others see me(Psalm 139:13-15)
  • I want to build myself and others up and pay attention to the affect of my words(Ephesians 4:29)

Social:

  • I want to not just stick to my few close friends all the time, but learn to be more comfortable around others(Matthew 28:19)
  • I want to work on being myself no matter who I’m around(1 Samuel 16:7)
  • I want to have a good balance between listening and talking(Proverbs 25:12)

This might not all seem to connect, but to me it does. I am going to work towards a healthy lifestyle where God is involved in every aspect and where He is my main focus.

I believe everyone is like the exiles of Judah at sometime in life, where they need to turn back and have a heart for God. Today was a day of refocusing on what really matters, my relationship with God.

How can God and pain both exist?

If God is all powerful and all good, then why would He let pain and suffering exist?

At some point in everyone’s life, they will experience some kind of pain. Because pain exists, then it must have a reason or purpose since God is a purposeful and fair God. I believe that since God is just, that He would not let us go through pain or suffering for no reason. The reason that God allows pain and suffering in our lives, is because sometimes that is how He can best teach us or change us in a certain way. Often times, people reject God because He allows the pain and suffering when He could stop it since he is all powerful. I think that our pain and suffering is meant to bring us closer to God. As I said before, everyone has experience pain, and I have experienced plenty. I lost my grandma, who was my best friend, to cancer and I have suffered from depression, anxiety, insomnia, and physical pain. I have a physical problem called hypermobility. It causes my tendons to stretch way too far and my joints to be very weak. My shoulders and hips dislocate everyday from it, and it is very painful. There is no cure to it, only treatments that may help lower the pain or symptoms but not make them non-existent. My grandma was my best friend for most of my life and cancer took her life in October 2015. I dealt with severe depression, anxiety, insomnia, and PTSD. Due to all of this pain I’ve had, multiple people have asked me why I still love God with all that I am and live for Him. My answer is that after these struggles, I have seen the purpose behind them. My grandma passing away taught me that I cannot depend solely on earthly things or people because they will all pass eventually, but that I need to depend fully on God because He is eternal and will not fail me ever. From my physical pain, one of the many things I have learned is that God made everyone unique and who we are is something we never have to be ashamed of because in His eyes we are beautiful despite the flaws. As for the depression and other mental illnesses, the most important lessons I learned is first that life is precious and worth living because it is beautiful despite the pain, and the second lesson is that your story can encourage and help other people who may be experiencing the same or similar struggles.

Our God is all-powerful and just even though He allows the suffering and pain. He uses the pain and suffering to shape our character, show us our purpose in life, and to draw us closer to Him because He loves us and desires to have a relationship with each of us.

I know I have already shared this main concept before, but I felt like God was just reminding me of how good He is even through the tough times. Hope this encourages at least one person 🙂

Keep fighting

Once Upon A Time…

ONCE UPON A TIME there was a young girl. Her name was Mel Jo. Her life was great and she was always so full of happiness! She had everything a little girl could ever want, right? No. Her parents got divorced. She felt broken. Living in a broken home. Was this good? Not at the time. Was it bad? Not necessarily. The happiness never disappeared, not on the outside. But in reality, the little girl felt sad and anxious inside. Maybe she didn’t realize it though. Maybe she thought she was happy, but was actually not doing well at all. 

Things started to happen. Mel Jo found a friend. He was her Savior. That’s right, not savior, it is Savior. He saved her from despair and condemnation. Her mom got married and had a baby. Mel grew up going to her grandparents a lot and they became her best friends. Suddenly, out of nowhere, her grandma was diagnosed with cancer. Lung cancer.

Of course, Mel Jo did not take this well. Her best friend had cancer! Little did she know that this would drastically change her life. For better or for worse? Yes, both. She fell into a pit. It was dark and scary. It consumed and swallowed her up. She was sinking and felt nothing to grab onto that could save her. It pulled her and refused to give in and let her leave. It held her captive. Depression. That is what it was, depression. She felt hopeless.

Along with her grandma having cancer, she decided to support her by shaving all of her hair off. She was only going into seventh grade at the time. That’s right, it made her a target for the bullies. She started to hate herself and felt worthless. Mel Jo started to get anxious to do anything, scared she would mess up. The anxiety and the depression started to rip her apart inside while her best friend was slowly dying. She knew that her best friend wouldn’t make it. She had a weight on her and sickening feeling in her stomach everyday because she saw no way of her grandma making it out alive.

During the summer, Mel Jo was staying with her grandparents for a week, since she was helping take care of them. One night, she went to sleep with her depression and anxiety still having a hold on her. When she woke up the next morning, she saw her grandma on the floor in the living room and her grandpa was trying to get her grandma to open her eyes or talk to her. Mel thought that her best friend had died and froze. Her grandpa sent her to her room, but changed his mind and had her call her uncle. She was panicking the whole time. When her uncle arrived, he called the ambulance right away. The sheriff and other police officers showed up fairly quickly and Mel stayed outside waiting for the ambulance to show them where her grandma was. Mel Jo still thought that this had to be a dream and that it wasn’t happening. That was until the ambulance pulled up the driveway. It was real. This was happening. Her grandma was taken away from her to the hospital. Her family immediately rushed to the hospital. Her grandma was alive and turned out to have an unknown reason for her collapse and confusion. 

Ever since that day, Mel Jo relived that event often. She got nightmares of her grandma, her best friend, dying. She developed PTSD. The depression and anxiety mixed with her PTSD made her fall apart. 

The next year went by and things stayed the same. Then, Mel Jo started having her shoulder dislocate, something that caused her more physical pain than she ever felt. Both of her shoulders began to dislocate after some time. It caused more bullying and more trouble and stress than she needed.

October 6th, 2015 came along. Mel Jo was about to head out to the car to go to school when her mom told her to stay inside. Her stomach dropped. She didn’t know what was happening and started to freak out. Mel Jo’s mom came upstairs crying and said the words she never wanted to hear, “Grandma passed away this morning.” Mel Jo sat for a minute, waiting for her brain to process. Once her brain understood, she began to sob and say, “No, no, no. She didn’t. No!” She fell apart and sobbed for a long time. Her mom brought her and her siblings to their grandparents’ to go say goodbye to her grandma. Turned out she had passed away in her sleep. On the way to their house, Mel continued to sob the whole way there. When they got to the house, Mel went into her grandparents’ room to see her grandma. Once she was in the room, she saw someone. It wasn’t her grandma. It couldn’t be. Her grandma wasn’t ever cold and lifeless. Her grandma wasn’t pale and strangely colored. No. Her grandma wasn’t that body on the bed. Her grandma was the jokes and love she got. The rest of the day, Mel just slept to try to get the pain away.

Mel lost hope. She didn’t want to live. She wanted to be numb to the pain. Mel Jo began to drag a razor across her arms and legs to feel the pain outside and not inside. It didn’t work, but she continued for months and months. She didn’t want the pain and suffering, so she tried to kill herself. It didn’t work. When she continued to want to die, she told her mom she didn’t feel safe with herself and needed to leave. Mel ended up in the teen psychiatric ward. She was there for 16 days getting therapies that barely helped. One night while at the hospital, she had a dream that Jesus was with her in her grandparents’ woods and saw a cardinal, which was her grandma’s favorite bird. The next morning, she didn’t feel suicidal. She had hope. After a few days, she went home and continued to get therapy and learned to cope with the grief.

A few months after that, Mel got surgery on her shoulder. The months after the surgery, she continued to heal emotionally and physically. Five months after the surgery, Mel Jo woke up and her surgery shoulder was dislocated. That meant that the surgery had failed. The pain of dislocation was about a thousand times more difficult after surgery compared to dislocation before the surgery. She didn’t understand why all of this was happening to her. Had she done something wrong? Was God punishing her for sinning? No.

Mel Jo noticed something. God was using her circumstances to change her. She started to lean on Him because of what was happening. She was stronger and more on fire for Him. She found hope in the place she never looked, to God. She found worth in who she was, a daughter of the KING OF KINGS! She realized that she is loved and adored by the Creator of all things, for the glory of Him who is greater than all things, and that she is awesome!

I am Mel Jo, I’m Amelia Jo. I love my Savior and I would never erase the pain and suffering I’ve been through because I wouldn’t be me without those things. I praise God for the work He has done and is doing in me. The moral of the story: pain and suffering don’t make God not all knowing or all powerful or all good, they make Him more of all those things because He is a good Father who knows what is best for His children. He loves me. He loves you. And He is faithful, was faithful and always will be faithful.

Thank you to everyone who has supported me and loved me during all that has happened. I love you all so much and I hope that my story has helped you.

-Amelia Jo