Shake it Off

Living with a chronic illness is a challenge beyond words when encountering people who don’t understand. We have all had an experience of rudeness beyond belief. There are stairs when taking medication in public. Rude remarks when using a walking device. 

 I cannot tell you how many times people have been disrespectful or stared at me because I use a wheelchair in a store. The majority of the time people either stand in front of me, unwilling to move or practically run away. People act like I have the plague. I have heard over the few years I have used a wheelchair in a store that I am too young to use one or too pretty. The stairs and remarks make me feel like I owe people an explanation. However, I do not need to explain my life to everyone I encounter. If the right doors are open to education someone I don’t mind but there shouldn’t be a social pressure to explain it all. 

 Many people doubt the intensity of our pain and they question if we are indeed really sick. No one seems to understand battling against your body and taking care of yourself is a full-time job. Simple tasks are draining. Some people go out of their way to upset us or to be rude. They offer unnecessary options on how to break free of the chronic illness chains.

 

Too often Spoonies lose friends due to their illness. Some people want absolutely nothing to do with us while others act strangely towards us. 

Too often people judge us before they get to know us. People treat us at times like we are nothing or are stupid. 

Too often we hear phrases like: 

But you don’t look sick

You need to be more positive

Have you tried…

You’re too young to be sick

It must be nice not having to go to work/school

You’re just having a bad day

You need to get more exercise

It’s all in your head

Maybe if you got out more

These things get under a spoonies skin, to say the least. When people mistreat you, SHAKE IT OFF. It is not your fault. Don’t let them get to you. You are an amazing person. Even though you are ill, you are so valuable. You have so much to offer this world. Shake off the stares, Shake off the negative and nasty remarks, Shake off the heartbreak…. Shake it off.. It’s gonna be alright

Hold your head up high, cause it’s gonna be alright. You have so much courage. You are an inspiration for thriving despite every setback. Sending lots of spoons, prayers, and hugs. ❤

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Great Spoonie Volgs

YouTube is an interesting place. Allowing for entertainment, vlogging, and education. I never used Youtube much until I went away to college and needed to force myself to rest. Of course,  finding tips for living with a chronic illness and encouragement was a plus.

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Kelly Patricia is one of my favorite YouTubers and a huge inspiration. Kelly has a gift for encouraging others. She also has amazing faith. Kelly has an interesting mix of chronic illnesses and is still partly undiagnosed. Her story is extremely relatable, especially with the struggle of finding decent doctors. Some of her illnesses include IBD, Endometriosis, and Arthritis.

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Lets Talk IBD

Maggie has a great channel featuring Inflammatory Bowel Disease. She has a J-pouch and information on doing feeding tubs as well as coping tips for life with a chronic illness.

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Inflamed and Untamed

Sarah also has IBD and is an excellent advocate. She is blunt. She has battled many surgeries, hospital visits, and flares. She has partnered with the Chrons and Colitis Foundation. She has been on multiple IBD discussion panels and has a lot of knowledge about IBD.

 

Helping Other Despite Illness

Before stepping into my currently reality, I was able to serve others regularly. I was able to help at free dinners, do yard work, mission work, help out with a retreat, youth group, and a few other small things. I love to help. I figured I would only need to step back slightly for half a season due to my health (mainly due to getting answers and five operations in four years). However, that was not reality. My limitations weighted me down as I realized how I had been serving was no longer an option physically. The desire to be used burned with in as I pleaded with God to use me in any way. This is still something I am working through.

I adore running Chronically Hopeful, but there are days it doesn’t seem like enough (there is plenty of work, but I wanted to serve more).  Most of you know that right now I am leading with a few other women two online Bible studies. I have also joined the ministry team for my online Church.

When God lovely nudged my heart to lead Come With Me, I attempted to tell Him I was too busy. Can you guess who won that disagreement? He did hands down. One of the chapters we are reading this week is about Jesus’ presence in a storm, specifically when the disciples woke up Jesus in a panic followed by Jesus simply rebuking the storm.

We all encounter different trials in different seasons of life. Trials come so that God can discipline us, mold us, enable us to comfort others, and bring us closer to Him all while bringing glory to His name. The Bible calls us to carry one another’s burdens. Do you know of someone in a trial? Trials are demanding. Support is essential during these times.

Most people who follow Chronically Hopeful are chronically ill, so the remainder of this post is written with you in mind. How can I support someone when I am physically limited? It can be intimidating to offer help when you feel flawed. You might be turned down completely, I have been many times, but that’s okay. Offer whatever you have to God, “not enough becomes more than enough when we give it to God.”

Keep in mind the little things make a big difference. Everyone needs encouragement. The simplest notes of encouragement go a long ways. Use Facebook, e-mail, or snail mail. A short note with a Bible verse or a line or two are excellent ways to start. If you want a little more of a challenge write an entire letter and be personal.

Find an in person project that is short term and can accommodate you needs. This might be assisting in the nursey at church, being a greeter, making a meal for a family, or helping a child with homework in the neighborhood.

There is nothing like being in person, but at times illness traps us either keeping us homebound or sucking the energy (and spoons) out of us. Volunteer online. I know at first it is a strange concept. Support groups can use help with events or managing pages or responding to comments. Online Bible studies are another option.

Do you find it difficult to reach out and help others? Share your struggles. Share ways you have been successful in this.

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General Medication Guide

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I can recall a time when swallowing pills were my worst nightmare. I was never able to remember to take my multi-vitamin. And I would avoid medication like the plague. Those days seem a lifetime away in my past along with carefree sunny afternoons of childhood. If you are newly diagnosed, there is a lot to learn, it can be intimidating.

If you are newly diagnosed, there is a lot to learn and a lot that sounds scary. The majority of people with a chronic illness will encounter a medication at some point in time, for many of us, it becomes a daily part of life. It becomes as natural as brushing your teeth.

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Constructing a treatment plan and sticking with it is essential making a big difference. The positives and side effects need to be considered before agreeing to any medication. Listening to the doctors expert advice is vital. In addition, I recommend doing your own homework and speaking with others who have taken the medication if possible. Keep in mind that everyone’s body reacts differently. Your body will not react the same way someone else’s has. If you have a caretaker or support system it is also wise to get their option. Personally, I always talk to my mom letting her know what I have learned about a medication, side effects, how long it will take to work, and my thoughts. It is okay to say no if you are not comfortable with taking a particular medication.

Vitamins and Supplements

Vitamins and supplements need to be discussed with your doctor and carefully thought out. I have multiple autoimmune disorders, therefore, my immune system is overactive. Vitamins and supplements boost your immune system, so I need to be cautious as I select only what my body truly needs. Which vitamins I take does vary on what my body needs and what other medication I am on. For example, with Prednisone potassium is one thing I know I need to have. With Depo, I need calcium and vitamin D. If I feel like I am not absorbing things properly I increase my vitamin C. Balance is key. The only other supplement I typically take is fish oil which can assist in brain fog and inflammation.

Over the Counter

Interactions need to be checked, whether it is with vitamins, prescription, or over the counter medications. Again over the counter medications must be discussed with your doctor to ensure it is the best thing for you. By simply talking to your doctor you can avoid terrible interactions and side effects.

Organization:

Organization is essential in many aspects with a chronic illness. If I didn’t have a system, I would not take my medication or vitamins ever. Especially considering most of us have brain fog. I keep all my medical supplies in a crate. This not only includes my medication but also tiger balm, braces, and chemo supply. I also have a daily pill organizer.

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Knowing when to take medication is important. Personally, I take the majority of mine after meals. Setting an alarm on your phone can be helpful. There are also free apps to help remind you to take medication on time. Having someone you are frequently with check in with you can also be useful.

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Whenever I go out I use old pill bottles to store the medication I will need or might need. I have a makeup bag that I put everything such as my inhaler, that I might need while I am out.

How do you stay organized with medication?

‘Tis the for midterms, testing, and finals. Tests were never my favorite part of school. Testing has become more of  challenge because of my illness. Brain fog interrupts as well as symptoms. Ideal testing conditions rarely happen, but I have learned to work through it. I am going to share with you a few spoonie academic testing survival tips.

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Prior to the test gather as much information as you can about the test. The more information the better this way you can plan accordingly.  How many questions? What type of questions (multiple choice, essay, fill in the blank, ect…)  How long is the test? Are you able to retake the test? This question is outside of  the norm, but I have taken two math classes that allow the student to retake quizzes as many times as they want.

If you are receiving accommodations make  your professor is aware of this and applies them. I get extra time. However, none of my professor remember this. I always send out an e-mail before the first test reminding them of my accommodations.

Where are you testing? Do you need to schedule to test some where different? Most schools offer somewhere other than the classroom to take tests if you receive accommodations.This is a great option. When I tested in a different room I was by myself or with under five other people, therefore it is much quitter.

If you  are testing at home it is important to set up your testing space effectively. Personally, I test in my room. I usually aim to take my tests in the morning. If the test is open notes I spread out everything I need. Of course I have additional material such as a calculator or text book or paper and pens near by.

I have my just in medication which includes my tachycardia medication, nausea medication, Tylenol, and my inhaler. I always have a minim of two drinks; hot tea and water. If you have POTS consider having Gatorade on hand.

For longer tests I have a snack on hand. My heating pad is never far away. I set everything up at my dresser (more or less it is my second desk). I am able to put my feet up on another chair if needed. I am able to sit on the floor or my bed. I also get up and walk around during my test because of back pain. Depending on the test and pain levels I either walk a few feet to my door or down stairs to my kitchen. Walking around helps relive some pain and helps lift some of the brain fog.

I always wear compression stocking. Comfortable clothing. I also have a sweat shirt and blanket near by. Testing at home allows me to control the temperature in the room which effects POTS symptoms.

If symptoms get intense know what to do. If you pass out, once you are stable who can you call and inform about what happened? Or if you end up ‘locked’ in the bathroom because of IBD (or another illness).

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I still have not come close to mastering any skills that assist with brain fog and testing. Please comment any ideas!

Five C’s of Coping with Stress

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Stress comes with chronic illness.  Get one chronic illness and receive more stress than you dream possible at no extra cost! Not the type of deal I was hoping to receive. We all know that stress is bad for us, especially for our illnesses though it is nearly impossible to avoid. Like pesky mosquito on a summer day.

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There is stress at work. Stress at school. Stress at the doctors, the pharmacy, with the insurance company, and stress from the endless testing. There is stress at home when the kids constantly bicker. Stress from the medications. Stress from the endless bills. Stress from the pain. There is no way to just avoid stress. Therefore we need to cope with it and this is not always an easy task.

The five Cs of Coping with Chronic illness Stress: a short guide.

Cry

I have always been an emotional girl. Look at me the wrong way and I’ll start to ball my eyes out. Crying is a wonderful and healthy way to cope with stress. Releasing the tears can help the body work through stress and regulate various levels in the brain. A good deep cry can assist in coping with stress.

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Cuddle

Who doesn’t love to cuddle?!? I mean seriously, what is more comforting then grabbing your furry friend and spending some quality cuddle time? Cuddles and hugs come with extra health benefits besides being awesome for stress like lowering blood pressure.

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Coloring

Yes, color. Your favorite childhood pass time is not only acceptable in adulthood but it is recommended and healthy. “When coloring, we activate different areas of our two cerebral hemispheres, says psychologist Gloria Martínez Ayala. “The action involves both logic, by which we color forms, and creativity, when mixing and matching colors. This incorporates the areas of the cerebral cortex involved in vision and fine motor skills [coordination necessary to make small, precise movements]. The relaxation that it provides lowers the activity of the amygdala, a basic part of our brain involved in controlling emotion that is affected by stress (huffingtonpost).” The bottom line? Coloring is a creative way to combat stress.

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Chatter

Call up a close friend and vent away. Letting it all out helps.

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Change

A change in scenery can make a difference. If you are able go for a walk, go over to a friends house, or to your favorite coffee shop.  Go some where different and engage in a different activity.

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Share how you cope with stress.

But You Don’t Look Sick

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“But you don’t look sick..” A saying that chronically ill people hear way too often. For those who have recently meet me I look like a normal 21 year old girl. But my family and church family are able to see the difference in me.

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The girl who stares back at me when I look in the mirror is someone I do not recognize. That girl is not me. She has a rounded face, pale skin, thinning hair, and tired eyes. I am…or in reality was a girl with dark olive skin, bight and energetic eyes, thin, and tall with thick dark brown hair that most people mistake for black. I have changed drastically sense becoming ill. I am not the same girl physically or emotionally. Not all the alterations have been negative. It is difficult sometimes to be so different compared to who I was before I became ill. Medications have altered my body somewhat, but the majority of the physical changes are due to Lupus. At times looking through photos is difficult. I like who I have become. But the physical changes are hard to grasp. My body doesn’t feel like my own… it is like borrowing something that doesn’t fit right. Appearance doesn’t matter as much as it use to. It is more about feeling healthy and functioning; living again. I try to focus on this and the hallmark of what inwardly make me, Victoria. Some days it works amazingly. With no make up and hair up I feel like myself and I feel pretty.  Other days, are more difficult after layers of make up and many spoons wasted tears of frustration wash it away.

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“But you don’t look sick..” is never a comforting phrase. People might think it is a compliment, but it is not. It makes us feel like you do not believe how sick we are. Our outwards appearance, does not reflect the war going on inside of our body twenty four seven. Thankfully the destruction is not visible.

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Those who are chronically ill learn all the make up, clothing, and hair tricks. She learns to fake a smile. To be a ray of sunshine. To pretend to be a healthy girl. Behind closed doors, everything is different. The make up comes off, the hair goes up, pj’s on, and the tears flow. With her head buried in her pillow she wonders how she made it through another day thankful no one saw though her mask. Insiting that she doesn’t look sick only adds to her struggle. Your words weigh more then you know.

Your world drastically changes in every way possible when you are chronically ill. It is like living on another planet in comparison to how thing were when you were healthy. Adjusting is difficult. You need to be patient with yourself. Allow yourself time to adjust to all the alterations your illness has imposed. Remember, that there is much more to you then the person looking at you in the mirror. Yes you might look different and that is okay, you are still beautiful. In addition to physical beauty, you have a stunning personality.

How do you cope with the changes your illness has caused?

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Picking A College

Most of you know that I’m a college student. My academics are important to me. Lately i have been struggling to keep my head above water in regards to my school work. My abdominal pain has been getting worse daily. It has taken over my life.

I have always enjoyed school over all. Of course there are days I don’t love it and subjects I don’t like.

Preparing for college was a challenge due to my illness. I began my search early but I wish I started sooner. I choose a college three hours away which was not ideal. I had e expected to be able to go to school full time and have a job. I thought once i began medication i would improve quickly. I had unrealistic expectations. I began school two months,after my fifth surgery. I don’t recommend this.

My parents add I soon realize me going to school so far,away want a good idea. My heath got worse. But i was determined to finish the semester. Over Thanksgiving break I had blood in my urine…game over. I knew I couldn’t go back to school. I completed my first semester online. My plan was to get better over break then go away to school again closer to home. However, with a sever double kidney infection that was not an option. Recently I scheduled my classes with the ‘local’  (which is an hour away) community college. I tired to be happy and excited about the change. I greeted the semester with a good attitude and an open mind. The semester busted at the seams with obstacles. I had to receive antibiotics though an IV, a bladder scope, and a few dozen kidney stones. The rheumatologist I had been seeing took me off of my Lupus medications, which complicated things.

I had been able to get ahead with my classes. The flexibility with online learning is great. I completed the semester with a 3.5 GPA. I had been told that I am not a smart person through out my school career. I never expected to do this well in college. Last semester I ended up with a 4.0 GPA which I have mentioned before mainly because I am so surprised by it.

Entering college is scary and ecciting.  Picking a college and filling out the paper work can be stressful. It is a challenge to find the prefect school for you. I don’t know about you but I don’t know how I’ll feel five minutes from not never mind in a few months to a few years. I recommend beginning your college search as early as you can, this way you will have plenty of time to consider your options and it will be less stressful.

The biggest question is: is it realistic to live on campus (if that’s one of your dreams). It is best to discuss this with whoever helps take care of you, anyone in your support system, a school counselor, and your doctor. You need to make sure your health is stable enough to make that huge jump to living on a college campus. I would recommend either picking a college fairly close to home or near relatives or a close family friend. This way if you end up in the emergency room, are going for extensive testing, or need support someone you know well and trust fully is there for you.

In addition to being close to someone who knows your medical history and you trust there are many other factors to consider when choosing a college.

Some questions to ponder while searching for what college you will attend:

  • Consider what the area is like compared to wear you live. Is it city, suburban, or rural? Will living in the city for example affect your health? Personally I cannot live in the city due to the air and noise.
  • How close is the nearest hospital? What type of a reputation does it have?
  • Will you need to switch doctors? (If so, it is best you do research on what options you have for a new doctor. You want to be sure they know what they are doing and can properly care for you.)
  • Where is the pharmacy?
  • How long can I expect to have insurance coverage? (For example, up to what age am I covered? Do I need to be a full time student to receive or “get” full coverage?
  • Is there a nurse or licensed practitioner?
  • How big is the campus?
  • Where will you be living? Is the dorm building handicap accessible?
  • How many people will you need to share a room and a bathroom with?
  • Whats the food like? Would your body be okay with what the serve?

Let me know your thoughts in the comments! If you are in college currently or have already graduated please share other things to consider when picking a college.

Invisible Illness Awareness Week

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There is more than meets the eye, don’t judge a book by its cover. Sayings we can spit out weightlessly in a moment notice. Our brains have memorized the words yet in many situations do not comprehend the depth of these words. Riding through the motions of life we jump to various conclusions based merely on what our eyes rely to us. We are quick to jump to conclusions and far too judgmental.

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Invisible illness awareness week is essential. “But you don’t look sick” is one of the most over used phrases in the Spoonie world. Our outward appearance does not clearly display the war raging inside our bodies. Many individuals with chronic illnesses lose their friends, are treated poorly by family members, and receive rude comments from strangers. There is a lack of understanding and a lack of empathy. People make assumptions based on appearance and many times are unwilling to listen to what is really going on with an individual who is ill.

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Invisible illness awareness week is a campaign founded by Lisa Copen over ten years ago. Lisa is the inspirational founder of Rest Ministries.  Invisible illness awareness week empowers those who live daily with a chronic illness.  Additionally it raises awareness for countless invisible illnesses. “96% of chronic illnesses are invisible.” This campaign strives to make the invisible…visible. While an individual might not see our illness that does not make it any less real. It is very real. A battle that must be fought without ceasing.

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My heart is heavy with passion for the invisible fight. Raising awareness for chronic illness is vital to me. I believe that educating people about chronic illness is essential. Knowledge is power. Educating people who don’t have illnesses enhances their empathy for those who battle chronic illness daily.

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The campaign and raising awareness in general impacts those who are chronically ill as well. It is empowering. It also encourages those who are chronically ill to keep fighting. Raising awareness reminds people that they are not alone, they are not the only one struggling with illness and the challenges it presents.

I feel obligated to share my story and assist others with chronic illness in any way possible. My hope is that others will be encouraged, learn, and find support through my openness. I am bursting with excitement for invisible illness awareness week. I hope you will join me in learning about invisible illnesses, celebrating those who have overcome obstacles their illness has presented, and sharing inspiring stories. Together we can put a stop to the assumptions of invisible illness. We can make invisible illness visible.

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This year invisible illness awareness week is September 28th – October 4th. The theme is My Invisible Fight. I will be posting invisible illness awareness things here and on my facebook page Chronically Hopeful through out the month.

Join us on Facebook:

https://www.facebook.com/InvisibleIllnessWeek/timeline

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There are many effortless ways to get involved in invisible illness awareness week. Check out and like both the invisible illness week and chronically hopeful facebook pages. There will be a wealth of resources on each page daily. Uplifting pictures will be shared, beautiful stories, and articles. There will also be online conferences throughout the week.

http://invisibleillnessweek.com/

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High School

High school is a roller coaster ride; adding a chronic illness makes things even more complicated. Before school begins I would recommend setting up a meeting with your councilor and someone else in the admiration departments such as the principle.  Make sure you have a parent or another care giver with you who know your complete medical history. Be sure everyone has an understanding of your illness. Discuss with everyone present accommodations you might need, let them know you are still under doctors care, what to do in an emergency, and what to do if you are absent due to a flare.

There are a few documents you might need to get, which include: a 504 plan, a doctor’s note, and a note from admiration of your school or councilor. A 504 developed to ensure that a student who has a disability identified under the law and is attending an elementary or secondary educational institution receives accommodations that will ensure their academic success and access to the learning environment. Find out more at this website: http://specialchildren.about.com/od/504s/f/504faq1.htm The 504 plan will “follow” you to college.

Sadly not all high schools are willing to work with students who are chronically ill. There are other schooling options. I had attending a public school my entire life. My health violently spiraled downhill every year of high school. Junior year I had seizures due to a medication I was on. I had a fairly mild one in school one day and locked myself in the bathroom stall. As a result I was put on homebound. My mother and I met with the principle in preparation for my senior year. During this meeting we were told if I continued to stay on homebound I could not walk for graduation. Many of my teachers refused to give my tutor the work while I was on homebound. (I have done homebound through a public school three separate times). After a lot of research and discussion my parents and I agreed Cyber School would be the best option for me. My only regret is not going into Cyber School sooner. There are FREE public school, cyber school options. Type Cyber School in your state into Google and you will come up with a lengthy list.

The school I went through was amazing. Public Cyber Schools give you EVERYTHING you need. They send you a lap top, microphone, text books, printer, and any other supplies you might need. They also pay something towards your internet bill. In the beginning of the school year I went to class every day. Yes you read right I went to class. I would log into the schools website and go into an online class room. I was able to hear my teacher, read power points, see videos they showed, and interacted with students. I was able to speak to the entire class as well. There was a way for me to private message the teacher, raise my hand, and even let them know if I had to leave my room to go to the bathroom.

I always liked school, but I found it more enjoyable while I was in Cyber School. I cannot describe how priceless the flexibility was. I no longer had to worry about keeping up with the rest of the class. I was able to focus more on my health. I went through a period of time that I got sick if I got up too early. I was able to avoid this being in Cyber School. I could access my work anytime, 27/7.  I was able to go ahead, which was another priceless asset. About two months into school I was approved for ascyncerness learning. This meant I did not have to attend class. I had to maintain a certain GPA to stay in that program. Ascyncerness learning is not for everyone. My teachers e-mailed all class sessions to anyone in case we needed to review. I was able to view all the lesson plans, notes, power points, and due dates. Some teachers allowed me to take tests and quizzes anytime I wanted but on the other hand some teachers locked them until a certain date. My grades improved greatly.

I found in Cyber School I received more support. My teachers were very caring they checked up on me every few days, I had a counselor, and a family coach. They all helped me achieve my goals while I searched for my diagnosis.

One of people’s concerns is lack of socialization. There were more chances for me to interact with other people than I could keep track of. Academically we were required to do message boards. This included writing an essay or answering a question then answering another students post. There were group projects and interaction with other students during class. There were over twenty clubs. Some online but others were in person. There were chances to do sports as well. There were field trips and get together weekly. The school also had dances, prom, a regular graduation, year books, and more.