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.

 

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Online Bible Study

Being mainly homebound is difficult. We long to be as normal as possible, yet our bodies seem to fail  repeatedly. Technology paves the path to socialization. Of course, being in person is ideal, but not always reality.

We weren’t made for isolation, yet slip into its trap all to often. Community is an essential aspect of life.

Online Bible study, is a fairly new concept. It provides a wonderful chance to get into the word of God, grow Spiritually, and to have some degree of fellowship. A Bible study or small group can also provide accountability. This is by no means only for those with a chronic illness. Just like at most churches, you get a mix of people coming from all walks of life.

About a week ago, I began my second online Bible study through Proverbs 31 Ministries. Proverbs 31 Ministeries is an excellent resource for women of all ages. ” Wherever a woman may be on her spiritual journey, Proverbs 31 Ministries exists to be a trusted friend who understands the challenges she faces, walks by her side, encouraging her as she walks toward the heart of God.”

I began participating in a Proverbs 31 Ministries Bible study about a week ago. We are reading, I know His name by Wendy Blight. In addition, to reading a section of the book daily (Monday – Friday) we have a private Facebook page where we are able to share with one another. For this particular study, there are a lot of women. For me, at this time, it is not realistic to read every comment (though I did try). I aim to read five to ten post and comment on a handful.

Another online women Bible study is Good Morning Girls, by Women Living Well. I highly encourage you to consider joining some type of Bible study or small group either in person or online. If you think you would benefit from an online setting make sure to do your homework, find out what the group believes. And, of course, pray over it before jumping in.

 

Memories Replay

Memories replay

Of dark gray days

Standing in the rain

With all the pain

Never forget

Every moment that took your breath away

When there was nothing to say

The scars are still there

Know that he cares

Safe in his arms

Away from harms

She told her everything will be okay

Sun will start shining brighter today

She is loved and accepted that’s where

She belongs

They’ll help her thought the rain

Stillness In the Invisible Fight

Chaos, one word to sum up the invisible fight. There are always phone calls to be made, medical testing, prescriptions to be filled, and doctors to see. And that is only the tip of the ice burg.The invisible fight is draining physically, emotionally, and spirituality. It demands all we’ve got and more. Sucking the spoons right out of our grasp. On top of the daunting tasks embed in chronic illness we attempt to be as normal as possible adding school, work, food shopping, and social events. It is a full time job.

There never seems to be a dull moment. We have become accustom to fighting, it is not a choice it is something we must do in order to survive. Accustom to the demands of this life. We fight against invisible illness, for tests to be run, with insurance companies, and to receive proper treatment. Our defenses are up. We attempt to be strong for those around us. Pretending we don’t need any support. We are weary yet dressed in a warriors optimistic attitude we continue to fight another round.

“The Lord will fight for you, you need only to be still.” Exodus 14:14

Finding stillness in the mists of the fight seems impossible. Putting our to do list aside and quiet our minds we can enter into the presence of the Lord.The Lord is a flawless example of a warrior. He has fought for his children restlessly providing a picture of his love that is beyond words, beyond human comprehension. We can confidently surrender our invisible fight into His sovereign hands. The Lord understands every aspect of our invisible fight. He will support us, substation us, provide for us, and fight for us. The only thing we need to do is be still and trust in Him.

How do you find stillness in the invisible fight?

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My Invisible Fight

If you know me, you know I am chronically ill. My illness does not define who I am but it is a part of me. I look at as a trait not necessarily positive or negative. Like having brow hair, an oval face, or having dimples. My invisible fight. Words that empower. Words that inspire. Words that sum up my life over the past few years.

Without a doubt I have become a fighter, in this invisible fight. Few people know the details of my fight. Chronic illness is much more than what is seen on the surface. The battle is within. Falling apart only behind closed doors.

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I had many encounters with terrible doctors. No one took me seriously (I still struggle with this today). Doctors downplayed any concerns. My mom was my advocate, my voice. Growing up I was dangerously shy. If someone were to look at me crossed I would shrink back into my shell. Hearing my middle name released a waterfall of tears. Speaking up, was terrifying for me. Gradually I began to find my voice and become my own advocate. I have educated myself on treatment options, my illnesses, and everything medical that is relevant. I have learned that I know my body and my illnesses better than any doctor. After all I am the one who lives with it every moment of every day.  I fought to find my voice. My mom and I fought to find good doctors.

My health began to spin out of control in high school. It became evident that something was really wrong. Little by little new symptoms would develop. A new rash, unbearable pain, sun sensitivity, collapsing, weight loss, hair loss, and that was only the beginning. Medical testing became the norm of my life. Blood work that included more than thirty tubes of blood, MRIs, x-rays, GI studies, CATSCANS, scopes, EKGs, EEGS, and other medical tests that I cannot recall the names to. In addition, I had five operations in high school. The operations ranged from removing my tonsils to removing cysts to explority surgery.I thought I had hit rock bottom my junior year of high school, after an encounter with a medication that caused seizures. Little did I know rock bottom was much further down. Little did I know that I would long to go back to those high school years and deal with that pain and those symptoms.

I felt like the pause button has been hit one too many times. I have been home bound many times over the past six or so years. Every time play was hit and I began to recover, get stronger, and move forward pause would be hit yet again. It seems like each time my life is put on pause gets longer and finding the play button becomes more difficult. 

My invisible fight was taken to a new level in college first due to pluricy. Then to finding bloody urine that indicated a sever double kidney infection lasting four months. I was taken off my Lupus medication which gave Lupus permission to recklessly attack. I began seeing doctors every few days, had medical testing weekly, and became a regular at urgent care. I landed myself in the cardic unit last September. I continued to get worse. More testing. More doctors. More pain. Hopeless.

My symptoms shifted. My abdomen began to give me issues again. This time it was worse. Abdominal swelling to the point of looking at least six months pregnant was my newest symptom.  I began to question how much more my body could take. How many more days of intense pain that sent me to bed screaming and doubling over. I was taped. Giving in to the fight was tempting. No one had answers. No one knew what to do.

Things were terrible. Eating was difficult and staying hydrated was nearly impossible. The fatigue was thick yet my body wouldn’t surrender to sleep. I had to rest going up or down the stairs. Breathing was a chore. Shower a hazard. Daily tasks seemed like huge projects. Some days I couldn’t bend down to put on my own socks.

Finally it happened. This past April, I hit rock bottom. I could barely move. The pain and fatigue were more intense than I can describe. I was admitted to the hospital for ten days. https://chronicallyhopeful2014.wordpress.com/2015/05/02/hospitalization/

Looking back I believe that being admitted was the best thing for my health overall. I was at rock bottom. It was more difficult to keep moving forward than I can describe.

When I received the message on Chronically Hopeful inviting me to help and participate in Invisible Illness Awareness week I was shocked and over joyed. I firmly believe that sharing our invisible fight stories is vital. Someone had shared the fight song. I immediately connected with it and shortly after fell in love with the lyrics. I feel like that is where I am in my invisible fight, taking back my life. Taking back life after dramatic pauses is difficult. At times it is painfully slow. Progress seems invisible.  Taking back my life and continuing to fight is a daily decision and struggle. I am mastering a new balance act with my invisible fight and the rest of my life.

My invisible fight has probably been the most difficult fight of my life. I know it will continue to be a tough fight. It has caused me physical pain, heartbreak, taken me on an emotional roller coaster, played tug a war with my faith, caused me to lose friends, and lose much more. Yes, there are countless negative attributions of my invisible fight, but I am sincerely and deeply grateful to be in this fight. First of all I am grateful because I believe that God will use my invisible fight for his glory. Through my invisible fight I have matured as a person and as a Christian. I have learned so much. I have meet some of the most inspiring people. I have had the honor of running Chronically Hopeful and helping with the Invisible Illness Awareness Campaign. My prayer is that my invisible fight will be a testomy, inspiration, and blessing to others.

Emotions & More

Emotions can very well be our best friend or our worst enemy or somewhere in between. They change rapidly many times without warning. Adding any medication provides them with an excuse to run wild within. This is downright difficult to cope with. Not only do our emotions run wild but some medications change how we physically appear which can be just another reason we beat ourselves up. We are many times our worse critics. Over analyzing and negatively speaking to our selves. God did not create us to be hated. He is love, he crafted you through and by his love. By his love and grace you were saved. He does not want you in toxic, abusive, or negative relationships. Like wise he does not want you to be consumed by shame and negative self talk.

So much has changed for me sense becoming ill. One physical trait that sticks out like a neon sigh is my lovely moon face. I hated it in the beginning, I was extremely self concuss. Now I am by no means saying that I love it now however I have learned to accept it. More recently I have encountered abdominal swelling which makes me look six months pregnant. The swelling is daunting. Every time I get ready to leave the house the gruesome thought meanders into my mind, what if a some asks if I am pregnant or just asks how far along I am. The things complete strangers come up and say can be mortifying. I struggle with surrendering this completely to the Lord; leaving it in his hands. I give it to God, then go right back to worrying. Letting go and letting God completely be in control of anything is a struggle. As humans we crave control. We try to make sure everything is in place and unfolds according to our plans. We also worry. No matter what physical or emotional changes we encounter God still loves us, we were created in his image. He understands the changes we are facing and he understands our frustration.

Everything here on Earth is temporary, even the side effects from our medication. Coping with physical changes is a challenge, however you are not alone on this journey. Frequently, we feel isolated. We digest the lies that no one understands, no one cares, we are worthless, and unlovable. It is worth repeating, God is with you on this tragically demanding journey of life with a chronic illness. He never leaves you side, not even for a brief moment. He wants you to depend on Him every moment of every day. To depend on him when you have an abundance of spoons, joy, and laughter. To depend on him when you cannot go a step further consumed with debilitating pain and weakness; as you endure medical procedures.

Being wrapped up in life, you might neglect to acknowledge that there are other Spoonies out there. We understand your frustrations, symptoms, struggles, and your journey. Our understanding is incomplete only in the sense that our story varies from yours. We try to provide the most understand, support, and encouragement to one another.

There are countless things to attempt to cope with while chronically ill, it becomes overwhelming quickly. You my friend are doing an amazing job. You have achieved more then you ever expected. You are a warrior. Though the road might be long it is filled with beauty and blessings. All these things will soon pass and only remain as a mere memory. Medications and chronic illness might alter aspects of you, but you are still you. You are stunning inside and out, a true work of art with a breath taking purpose.

A Reason Why

Maybe there is a reason

For all the storms in life

For all the tears we cry

Maybe there is a reason

For every season

Why flowers bloom

Leaves glide

Snow blankets the Earth

And the sun warms our hearts

Maybe there is a reason

I’m alive

Maybe I have a purpose

Maybe I could change a life

Have you ever thought maybe just maybe

There’s a reason why the sun rises and sets

Why people go through hard times

Why you’re alive

Maybe just maybe there is a reason why

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.

She is the Clay

Tears have made her face moist

She’s longing to hear your voice

Seeking guidance to make a choice

She’s waiting day after day

Knows you are the potter and she is the clay

Things will fall into place in your time

Not alone in this climb

You’ll get her out of this bind

Let her know you’re near

There’s nothing to fear

Make her path clear

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Just a Drop of Encouragement

“The goal is to move through challenges gracefully and to enjoy life amazing moments to their fullest.”

It is difficult when your illness dictates your life. When you are trapped with no way out. Unable to live. Merely surviving one moment at a time. Every day you are face with many obstacles, which you gracefully face with determination. You might feel like you are dragging your body through the day, like you are going to collapse from all the pain. Unable to plan, because you do not know how you will feel in ten minutes, never mind trying to plan something a week from now. If you can relate to this know you are NOT alone. Others feel this way as well. It won’t be like this forever. Eventually you will be able to live life to the fullest again.  Every day you accomplish so much.  You are doing an amazing job! You might not be where you want to be and that is okay, you will get there in time. You are doing a fantastic job where you are in life right now. Don’t be too hard on yourself. Be grateful and proud of the small accomplishments. We must hold on to this hope, for it gives us the strength to keep fighting. Gentle hugs spoonie warriors. Sending prayers and spoons.