The Walk to Cure Arthritis Juvenile Arthritis

So I was not sure I could participate the walk this year since I had an ankle fusion 11 days ago. I talked it over with my mom and we decided that I will participate. I have had Systemic Juvenile Rheumatoid Arthritis since I was 6 months old. I have been on medications and IV treatments, in and out of surgical and hospital rooms, and in/out of strollers, wheelchairs, and scooters since. In 2007 I was scheduled to have a stem cell transplant, but 2 weeks before I was scheduled to have I went into septic shock. Having going into septic shock I was in a coma for 2 months and in rehabilitation for another 2 months. After having rehabilitation I went back to school being able to go as much as I could while losing my toes, finger, hooked up to an IV, and losing my hair. When I as 13 I had my left hip replaced. And in 2016 I lost a really good friend/mentor to lupus. This year I turned 21 and January 16 I had my ankle fused and cleaned, and my tendons lengthen. But I stayed strong because I knew I had to not just for myself, but for my family, my friends, classmates, teachers, nurses, doctors, and all the people I would meet in the future. I also stayed strong for the people I would have met when I am helping people in a similar story, I can’t wait to help people like me. I’m the fall I plan to go back to college at the University of Minnesota Twin Cities to study Graphic Design so one day I can have a photography non-profit organization that will benefit children and families just like my family and I. You can help children just like me who have been diagnosed with arthritis by joining the walk to cure juvenile arthritis or by donating to the arthritis foundations. People with an autoimmune disease such as arthritis or lupus have struggles that a person shouldn’t have to struggle with such as showering, getting dressed, brushing their hair, walking, and spending time with friends and family. By donating you will help find a cure for arthritis or send a child to a very special camp. By walking you will raise awareness to this children. Please donate or walk you have to do little but it will do a lot to those people with arthritis. disease that not only affect adults but also children. Please donate or walk you have to do little but it will do a lot to those people with arthritis. So I was not sure I could participate the walk this year since I had an ankle fusion 11 days ago. I talked it over with my mom and we decided that I will participate. I have had Systemic Juvenile Rheumatoid Arthritis since I was 6 months old. I have been on medications and IV treatments, in and out of surgical and hospital rooms, and in/out of strollers, wheelchairs, and scooters since. In 2007 I was scheduled to have a stem cell transplant, but 2 weeks before I was scheduled to have I went into septic shock. Having going into septic shock I was in a coma for 2 months and in rehabilitation for another 2 months. After having rehabilitation I went back to school being able to go as much as I could while losing my toes, finger, hooked up to an IV, and losing my hair. When I as 13 I had my left hip replaced. And in 2016 I lost a really good friend/mentor to lupus. This year I turned 21 and January 16 I had my ankle fused and cleaned, and my tendons lengthen. But I stayed strong because I knew I had to not just for myself, but for my family, my friends, classmates, teachers, nurses, doctors, and all the people I would meet in the future. I also stayed strong for the people I would have met when I am helping people in a similar story, I can’t wait to help people like me. I’m the fall I plan to go back to college at the University of Minnesota Twin Cities to study Graphic Design so one day I can have a photography non-profit organization that will benefit children and families just like my family and I. You can help children just like me who have been diagnosed with arthritis by joining the walk to cure juvenile arthritis or by donating to the arthritis foundations. People with an autoimmune disease such as arthritis or lupus have struggles that a person shouldn’t have to struggle with such as showering, getting dressed, brushing their hair, walking, and spending time with friends and family. By donating you will help find a cure for arthritis or send a child to a very special camp. By walking you will raise awareness to this children. Please donate or walk you have to do little but it will do a lot to those people with arthritis. disease that not only affect adults but also children. Please donate or walk you have to do little but it will do a lot to those people with arthritis.The Walk to Cure Arthritis

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Help Me Fund My Life and Purpose

https://www.gofundme.com/funding-for-life-and-purpose

My life has been a roller coaster of ups and downs, but one thing that has always been consistent(even when I had to miss some); my education. I was diagnosed with Systemic Juvenile Rheumatoid Arthritis when I was just six months old. Many people believe that arthritis only affects the joints, but the reality is, it affects your whole world.

My arthritis has not only affected my joints, but also my organs, and mentality of life. When I was ten I was two weeks away from having a stem cell transplant when my life was turned upside down. I had developed sepsis. I ended up being a coma for two months and rehabilitation for another two. Sepsis caused my toes and left fingertips to be necrotic, making them turn blue and fall off, all in a span of a year. While I was in a coma the doctors ended up doing an exploratory surgery on my abdomen to see if they could find the cause of sepsis. An early removal of staples caused my abdomen to reopen and become infected. I ended up having a wound VAC on for a year to close the wound. During the span of 1-3 years of recuperating I went to school trying my hardest to be at school as much as possible.

I promised myself that no matter what I would finish school trying my hardest. I believed, no matter what it took I was determined to earn a degree, whether that would be a meteorologist, doctor, child life specialist, or a photographer. I had a dream and I was going to make it a reality! Middle school was a very hard time for me socially and mentally. I pushed through it with all my might, I just kept saying only 7, 6, and 5 more years till I’ll be a senior. I went to school even while I was healing from a total hip replacement. I was on so much pain medicine that I was driving into walls, and a full day at school became unsafe. So, again I was stuck at home when all I wanted was to be at school learning.

In high school, I once again had to conquer complications from my arthritis and my weaker immune system. My freshman year I had eight ear infections. I kept being put on antibiotics, oral than IV. I was going to school with a needle and a tube stuck out of my chest, but I was still determined. In the spring of that year I had a mastoidectomy. When the surgeons went to take it out they found that the infection had ate through my skull and I had cerebral spinal fluid leaking out of my ears. This put me on bed rest for two weeks where i had to lay flat. Though I persevered my way through high school, I still ended up missing a half of the school year. Even though I had As and Bs a couple Cs that year I was failed in two of my classes. I eventually made those classes up in summer school. I still feel as though, it was unjust to give me those since I was not given the same opportunities to keep up my grade. The rest of my high school career I knew I had to work extra hard. By the time I graduated in 2016 I had earned a 2.9 GPA and a spotlight student. I finally did it! Despite all the obstacles, I was able to get into my number one school; Edgewood College in Madison, Wisconsin.

At Edgewood I met many new people but felt secluded. I was even discriminated against by a teacher and not given the same opportunity of other students which affected my grade. I was five hours away from home. Every week my mom had to drive back and forth, sometimes in 24-hours for me to be able to get my 6 hour treatments for my arthritis or to spend one on one time helping and caretaking. The campus was really hard for me to get around on.

In the spring my family experienced a tremendous loss of my grandfather, as he was my step father’s employer his death was felt in multiple dimensions. Even though I had successfully earned a 3.2 GPA, all the harder life situations had me thinking, my family needed me closer and I was ready for an different college experience. I had came to the conclusion that I would like to transfer to the University of Minnesota-Twin cities for my Sophomore year of College.

Than of course, life throws another challenge for me. Money. At the end of June we found out I could not apply to the University of Minnesota-Twin cities because of a financial mistake early in the year by my school, I now owed over $5,500 to Edgewood. I can not work, my mom earns a unlivable wage as my PCA, and due to the major death in the family we were already not financially well. I decided I would take off the fall of 2017 so we could figure out what to do.

Another bend in the river, in the fall I found out I needed an ankle fusion in January and the another after that is healed. Still unable to pull together the cash I need to get my transcripts released and with the fusion, I now had to take off the spring of 2018. With a plan, my specialists and I have figured out how to get me better off physically to start at the U of M in the fall. I am excited to have a new chance to experience college with more physical ability or at least less pain. I have risen to the challenge over and over. I have proved with ultimate strength and courage that I am able to meet my goals with complete and utter determination.

I am asking for help. I still need to find the money to pay back Edgewood, so I can apply for the University of Minnesota-Twin cities and pursue my education in Graphic Design. I am asking for your financial support in helping myself to realize a very possible dream and goal, earning my degree in Graphic Design. With your support I can give back to our communities in one of the most beautiful ways, capturing life moments in my personal perspective of photo artistry. My ambition is to support many organizations who give back to others, such as the Arthritis Foundation, and in doing so live the life I have been fighting for all along, a life of purpose. PLEASE DONATE. THE PRIORITY DUE DATE FOR THE APPLICATION IS FEBRUARY 1ST.

Sincerely,

Arrian Madden an aspiring Graphic Designer.

After surgery

My room for the next 10 weeks

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Hi everyone,

Yesterday I had my big ankle surgery. I had an ankle fusion with an arthroscopic cleaning to get all the junk out (Which the found a piece a bone floating around.). I was able to wake up very quickly from a nearly 5 hour surgery. I was in major pain when I woke up, but then they came in and gave me another pain blocker. I will either be getting out today or tomorrow. My pain from the surgery is tolerable since I had to get multiple pain blockers in my leg. I will either be going home right away or I will be going to a rehabilitation place for a week to learn how to do things right since I have to be non-weight bearing for 10 weeks.

If you have any questions please ask.

Thank you,

Arrian Madden

Where Have I Been?

This fall I took off of college because I decided that Edgewood College was not the right school for me. At Edgewood College I was over looked a lot while I was there. I was even discriminated against by a teacher. Though while I was there I did meet many great people who will be there for me. In the summer I had decided that I was going to transfer to the University of Minnesota- Twin Cities just to be closer to my family. When I tried applying I found out my transcripts were on hold due to money not being paid. The money that was not paid was because of the refund check that they had sent me and didn’t know I was having a 3rd party helping me pay for school so when they found out that I had a 3rd party they decided that I needed to pay back the $4,000 that they refunded me. I am not able to work due to my arthritis, so this put a huge gap on us. Upon finding this information out I decided that I would not be going back to school this fall. While I have been off I have been helping out my family.

On September 21st I went in to the podiatrist to get my feet looked at since I had extremely dry skin on them. The podiatrist had me get x-rays of both of my ankles since I have had more than arthritis pain and they have fused to walk on the outer edge. The doctor came to the conclusion that I have a stress fracture on my left ankle, so I have been using a boot to help the fracture. Along with the boot, he gave a recommendation to go to see his partner. I had the appointment with his partner and he decided that I will need to get a bi-lateral ankle reconstruction surgery along with scoping of both ankles. To get more opinions I went to see three other doctors and they all said the same plus they recommend a fusion and an arthroscopy. When we went back to the guy who is going to be performing the surgery we agreed on doing all three of the procedures. January 16th I will be having an ankle scope and a debridement, subtalar joint fusion on my left foot for now. Of course the doctor said that even though this will not get rid of all the pain it will help to elevate some of it. He said the recovery period for this surgery is 4-6 months. I will have to be non-weight bearing for 10 weeks.

I know it has been long since I last updated you guys on my life. My life has been a bit crazy since I last updated. From now on I’ll try to update at least once a month. Thank you.

World Arthrits Day 2017

Today is world Arthritis Day. I am one of the 300,000 children in the U.S. who has Juvenile Arthritis. I was the perfect baby and standing up by 6 months but then I was in a car accident and that changed everything for my mother (who was only 19) and I. After weeks of chronically projectile vomiting I went to see a rheumatologist who first diagnosed me with Kawasaki disease. Then after that they finally diagnosed me with Systemic Juvenile Rheumatoid Arthritis. A lot of children get missed diagnosed which if not treated right can be dangerous. As I grew up with a great supportive family I was in and out of strollers, wheelchairs, scooters, powered wheelchairs, and walkers. As I was growing up with JRA I was turned into a Guinea pig trying medicines that only adults were being put on. Up until I was 8 my mom was taking car of 3 kids alone. She was not able to have a decent job where she wasnt fired with in the first month. By the age of 10 I was ready to start a new life I was supposed to be one of the first children in the United States to get a stem cell transplant. But course life doesn’t always go the way you planned. Two weeks before I was supposed to fly out to Seattle to get the stem cell transplant I had sepsis. Sepsis caused me to be in a coma for two months. While I was in a coma my heart was pumping blood to my brain to keep me alive but when that happens sometimes limbs can become necrosised which happened to me. I am very thankful that Sepsis only caused me to loose my toes and fingertips on my left hand when I was supposed to loose so much more. As my family was getting ready to say goodbye to their daughter/sister I was slowly recovering; it was a miracle I woke up from something I wasn’t supposed to survive from. I was in the hospital for another 2 months recovering and learning how to live my life as a new person. 

When I was 12 I was able to go to a camp for kids with Arthritis and I have been able to go every summer since. Since I am not a camper anymore I have been able to be on the planning committee for camp and be the camp photographer for two years now. Which I am so happy that I able to lend my help to them since they have helped me in many ways. Before going to camp I felt alone but since my first year I have built relationships that will never end and if I ever need anything they will be there. By the age of 13 I was receiving my first total hip replacement. My freshman year of high school I had 8 ear infections in a year which resulted in me having a mastoidectomy where they found out the infection had ate through my skull so once again I had to miss a month of school for. Being this was my freshman year of school and having to miss half of the school year; this resulted in me having a bad GPA for the rest of my high school career. In 2016 I graduated high school with a 2.9 GPA even though since freshman year I had only earned As and Bs. Last year was my first year of college at Edgewood College which I received a 3.4 GPA and having to go back and forth to Home and school every month for my treatments. This semester I had to take a break for health and financial reasons. Next semester I have to have reconstruction surgery on both ankles I hope I will be healed by the time I start school next fall. I am now 20 going on 21 I am glad to say I have had Arthritis since I was 6 months only because if I wouldn’t have had it then I wouldn’t have been able to meet all the wonderful people I have. As you can see my story has been a roller coaster but I could not have lived my life with out my family and friends. 
Thank you to everyone who has been there for me. Thank you for supporting me. Thank you to my nurses and doctors who has helped me. Thank you to my teachers. And to anyone else who has believed in me. 

Remember, if you can’t fly, then run. If you can’t run, then walk. If you can’t walk, then crawl, but by all means, keep moving.- Martin Luther King Jr.

Standing Up to Bullies

29070-Robert-Frost-Quote-Never-be-bullied-into-silence-Never-allowMany people are bullied throughout their life, frequently people do not stand up for themselves. Morality can often depict people’s personality. Though people may be strong, but if they do not stand up for themselves, other often think that they are weak. Robert Frost once said, “Never be bullied into silence. Never allow yourself to be made a victim. Accept no one’s definition of your life; define yourself.” I did the exact opposite I allowed myself to be bullied into silence.

Throughout my school career, I was in and out of the hospitals, which made it hard for me to make friends. The reason I was in and out of the hospital is because at six months, I was diagnosed with Juvenile Rheumatoid Arthritis. Arthritis has given me a roller coaster of medications, treatments, surgeries, infections, as well as hospitalizations. My family has always been there for me no matter what. Even when I was in a coma for two months and another two months for rehabilitation they were there every day. Once I was able to be at school again, people started to bully me. I have always been strong as well as fought through things in personal health issues and family aspects. When this happened to me, it was people I thought were my friends, I could not stand up for myself. Something I believe one should be able to do is love them self, which is a lifelong challenge in itself. I could not do that personally, and I could call myself a hypocrite.  I feel that my decision to not stand up for myself was immoral. Instead of sticking up for myself, I told only my mom, which was fine until she went and fought my battles for me.

It was around lunch time, in fifth grade, when people started bullying me. I was at home, recovering from a hip surgery, meanwhile I received text messages. At first, I left them alone. I was severely tired from all the pain. However, my phone kept buzzing, and I decided to see what was going on. On the screen, there were multiple messages from two or three of my classmates. The first couple of texts were talking about my looks, and the next few were about my personality. I now know that I am not that person who they were talking about, although as a fifth grader, I did not know that.

My mom could tell something was wrong just by looking at me and talking to me, and so she took my phone away from me. After I told her, she went to the school. The school took away their phones and called their parents to pick them up at the office. Over the course of the weekend it continued, the school then said they were not able to do anything because it was not their property. After hearing that, she posted on her Facebook wall that I was being bullied, and the school did not do anything about it. Somebody who had connections to a news channel contacted the news network, and there was a report done about this incident. The report did not help with the incident at school, however there was a lot of individuals across Minnesota who reached out to me in support and shared with me their stories of being bullied as well. When I went back to school after the program aired, I continued to be bullied even more. My past friends called me a “tattle tale,” a wimp, and that I should not be at school. I chose to ignore them.

That summer (after the incident), I was playing at a park with my three younger brothers, and some boys from school were there. As my brothers and I continued to play, we were harassed by a group of five to ten boys. They taunted me and once again called me a “tattle tail,” “wimp,” and to “run back to mommy.” I felt that my brothers did not need to be around that behavior. I wanted them to be respectful to everybody no matter how old they were, so we left.

When school started back up, one of the boys who bullied me had moved to a different state. He sent me a message saying, how sorry he was for all that he had done. As time went on, I forgave him. Throughout middle school, I was bullied, further, but not as severely as before. Again, I did not tell anyone what was wrong, or stand up to the bullies. My first two years of high school, I was ignored; which is worse than being bullied in itself. In classes, I would end up having to do group projects alone. I would go down to nurse’s office to eat lunch, or I would end up sitting at a table by myself. Even though, I did not have many friends in my high school, I had many outside of school. They would help to keep my spirits up, nevertheless many of them lived hours away.

I feel, not standing up for myself was immoral. Moral codes often keep us grounded. When one of our own morals is broken, everything else just unravels with it. Morality means, living by your standards of what is acceptable. It does not have to be exceptionally right or good, it just should be the standard. The standard of the golden rule should be upheld by ourselves. I think we should treat ourselves as we would want others to treat us. If we do not stand up for our self, then society will take advantage of that, and will kick us down when we are not strong. When we look into the mirror we will be disappointed in our self, that we did not stand up to the bullies. To be moral, I imagine, we need to be kind to ourselves, others, and the environment. individuals need to have empathy for others and contribute to society. If a person lives by their standard of love, respect, and compassion, for themselves, others, and the environment, they are moral.

From the experience of being bullied, I learned that it is best to fight your own battles. To this day, I still have low self-esteem and anxiety. If you do not fight your own battles, in my own opinion, it will cause pain to our loved ones and to others who are bullied, both now and in the future. By standing up and putting myself out there, I and others will gain a lot respect, which will help us gain confidence. I feel, if I would have stood up for myself, maybe less people would have been hurt, including myself. My voice could have been a voice for the survivors of bullying. I could have been the voice of encouragement instead my voice stayed silent and it was hard for me to ever learn how to stand up for myself. My mom was specifically more affected then I knew at the time. She saw the pain I was going through, even though many others did not. When she saw I was in pain, she would ask me what was wrong; I was persistent in not showing my emotions and held it all in, which resulted in me fighting with her. My mom and I have always been best friends, with the exception of this period, our relationship ended up getting bruised, either by stuff I said or did or vice versa. I started laying the bricks of the wall that surrounds me starting with not using my voice with the first bullying experience, and I have continued building my wall ever since. If I would have stood up to those children right when the bullying started, maybe I could have become an even better person, a stronger person, than I am today I could have shown others and my brothers, it is okay to fight back for yourself and what you believe in, not only is it okay; it is essential.

Being bullied made me learn to stick up for myself and for other people especially, when I am or they are being bullied. As cliché as it might sound, never judge a book by its cover; we never know what a person may being going through. I always put on a happy face and pretend everything is okay. I am learning that only causes more harm the good. When I pretend to be happy and I am not, I lash out at the people I loved. Being bullied affected me in a lot of ways. Once one of my morals was broken, I slowly started unraveling. If I would have stood up for myself, I would have been a stronger person than I am today. I suppose, I broke my own moral code by not letting the public know what was wrong, having my mother do it for me, and not using my voice. I made myself and others unhappy by not standing up for myself sooner, maybe this paper is the beginning of a new journey, using my voice.

Sailors, Ships, & Seas

March OwlCrate Box was Sailors, Ships, & Seas. The theme was based on the book The Daughter of the Pirate King. The box consisted of a compass pendant necklace designed by OwlCrate themselves, mermaid scales wash taped by SimplyGlided, an octopus notepad by Boygirlparty, and a tea towel from Kitch studios. The book that came in this box was The Daughter of the Pirate King by Tricia Levenseller. A signed bookplate, a letter from Tricia Levenseller, and a temporary tattoo was also included.