Spoonful of Spoonie Encouragment

Mornings for those with a chronic illness are a struggle beyond words. Waking up and willing our bodies to function is a fight. Here is a spoonful of encouragement for spoonie warriors. Happy Monday, brave friend!

You have victoriously made it out of bed this morning. The symptoms and pain are already overwhelming, but you’ve got this. You only need to take today one minute at a time. You have all the strength you need, even though it might not seem that way. Anxiety and depression attempt to dictate your day. Take a breath. Take a break.  Get some rest. Keep fighting to make today the best day possible.

You have been chosen to walk this path. It is one filled with heartbreak, disappointment, and setbacks. Walking the path of someone who is chronically ill is a challenge to say the very least. Being sick has most likely disrupted your flawless rhythm with life. It has stopped you dead in your tracks. Your illness has tried to toss your dreams out the window.

Though this path is difficult, I assure you there is a lot of beauty to be discovered. Sure life is not what it used to be, but the song you sing is just as beautiful. There is hope, joy, love, laughter, and life to be found on this path. You will be able to recreate your wonderful dreams. You are still you, despite your illness. You are an amazing and beautiful person with a flawless story and a huge purpose.

    There will be days that you become overwhelmed and feel completely alone. Your feelings are understandable, however, I promise you, you do not walk alone on this path. There are people who care about you, people who understand how difficult the journey is, and people who want to support you.

I am proud of all you have accomplished. I know you will thrive today. This week will be lovely simply because it is the only choice. While you don’t need to be positive all the time you need to take baby steps forward. You are doing amazing. Raise your coffee (or tea) to a great week warrior!

Advertisements

New Year’s

2015 is drifting into our history. Countless changes and surprises transpire in a year; things that we would never dream happened. We have become better versions of ourselves; a step close to who God created us to be.

I hope as you reflect you detect the beauty from the pain. Though reflecting is wonderful, it can also negatively impact us. Slipping into harping on the negative events is easy to unknowingly do. It is hard to be joyful with a chronic illness, if, like most of us, the majority of your goals were not accomplished, and you are not even a breath closer to the dream that sets your heart on fire.

Acknowledging the negativities and let downs is fundamental, but we need to also need to gracefully be thankful for the countless positivities.

10858498_626964667413585_741464132227502910_n

If you follow Chronically Hopeful, you most likely know that the biggest event of my year was being admitted to the hospital last April due to elevated live enzymes and a severe Lupus flare. So, yes the most important thing I accomplished in 2015 is surviving. Every day is a struggle, still, but every day I’m grateful. It is hard to evaluate how I am doing in comparison to last  year. I am somewhat stronger, however, things are not where I need them to be. But I am determined to take steps forward towards less pain and a more normal life- whatever that might be.  You are not alone if you are battling similar health battles.

10580106_630091727100879_1333741413345155415_n

Making a New Years Resolution is more of a fad mixed with tradition. ‘Everyone’ is making them. No one is actually keeping them. By the time January is ready to make a graceful exit, resolutions have fallen away like a tear drop in the ocean.

I usually do not make New Years Resolutions. I can barely plan out this week without becoming utterly overwhelmed due to the fact that I don’t know how I will feel on any given day. I find that I personally do better setting a bunch of goals versus one big yearly goal. I have been compleating making a New Years Resolution. I have decided to set several goals including reading through as much of the Bible (cover to cover style),  to improve Chronically Hopeful specifically get 50 readers, and to improve things with my health.

So, what does the Spoonie New Years Resolution call for?

Flexibility: Make your resolution broad.

Realistic: Dreaming big is awesome, but keep your goals in your reach. Jump outside your comfort zone without putting your health at risk. You want to set yourself up for success.

Accountability: Share your resolution or goals with someone else. Allow them to hold you accountable. A little accountability goes a long ways.

Share some of your New Year’s reflections or resolutions in the comments.

 

Encouragement for You

 

Blessings are all around you though at times they might be hard to see. The fact that you woke up this beautiful morning is a blessing. You are a fighter with a sparkling and breathtaking personality. If you are able to walk on your own that is truly a blessing, but if you cannot and you have a walking device that is a blessing as well. Your senses are a blessing as well as all the amazing things your body accomplishes without you taking notice. Those that you hold dear to your heart are blessings so is every moment that you spend with them.

Not only have you received a great abundance of blessings but you have blessed other without even knowing it. You have been a blessing by welcoming a new person to your group of friends or your church. You have been a blessing by reaching out to a friend who was lonely. You were a blessing simply by being present and listening while someone was having a difficult time. Your life story and the story of how you have battled you illness has inspired many. It has given people hope, strength, courage, and peace. Many more people will be inspired by your story and blessed by your compassion. You have impacted more people than you are aware of, you matter to countless people more than you know.
Reflect on all the priceless blessings in your life and encourage someone in your life.

The Heart of Worship

Worship is essential to our spiritual well-being. We were created to love and worship God. However, God does not need  you to worship him. He desires to be in close fellowship with you. He craves, for you to understand his love for you. Worship renews us providing us with joy, strength, peace, and much more.

photo-1446974212588-b226d9d5e2c4

This song is a classic. Without knowing it many times our unfocused hearts, shove God out of the way; even during worship. We idolize other things or become prideful.  Our sin coved hearts begin to harden as we take steps backwards, away from the throne. How many time have we speculated how those around us are worshipping. In our minds saying, “She is showing off, that is not real worship.” Also allowing our minds to paint a captivating daydream. Consumed with our schedule, we fidget entertaining anxious thoughts.  Or we are more focused on the talent of musical ability than on the Sovereigness of God.  Music is a magnificent way to worship, but it is not the heart of worship, not the main focus.  Ironically, I am using songs to get me point across. The lyrics demonstrate truth,

“I’m coming back to the heart of worship
And it’s all about you
It’s all about you, Jesus
I’m sorry Lord for the things I’ve made it”

“The heart of worship is our heart, delighting in Jesus and expressing praise to him for the true things the Scriptures teach us about who he is and what he has accomplished for us.” God does not want us to participate in a drama production; he simply wants us to come as we are to authentically worship him. He knows our hearts. He knows every flaw and failure; every negative thing in our character and in our life. Despite this, he commands us to come as we are, as he lovingly extends his grace to us.

The majestic name of, the Lord is worthy of all honor. He lovingly crafted every corner of creation with passion. His fingerprints are evident throughout nature. “God’s glory is everywhere from the smallest microscopic form of life to the vast Milky Way, from sunset and stars to the storms and seasons.” Before God crafted the universe he construed a purpose for your life. Our righteous Lord is the source of life. Allow your heart to align with his will and worship his name.

QoR8Bv1S2SEqH6UcSJCA_Tea

It is good to passionate pursue things, striving to succeed as hard work pours out. However, none of these things should become a god in our life.  In the spoonie world chasing after the Spoonie dream is easy. The dream of a perfect treatment plan, pain-free living, healing, or aspects of a healthy person’s life such as a social life. “To treasure God more than pain-free living.”  Do you treasure God more than anything in your life?

I love the words to this song though it the Spirt has showed me a lot.

“We must not worship something that’s not even worth it
Clear the stage, make some space for the one who deserves it
Anything I put before my God is an idol
Anything I want with all my heart is an idol
Anything I can’t stop thinking of is an idol
Anything that I give all my love is an idol

And we can sing all we want to
We can sing all we want to
And still get it wrong
Worship is more than a song”

If we are not intentional about riding our hearts from idols we, fall into the trap of worshiping them without even noticing it. The enemy longs to disconnect us from our creator. Keeping us away from worship is included in his laundry list of ways to diminish our faith. He attempts to keep us too busy to spend time with God, “the primary purpose of Sabbath margins- of saying no when appropriate- is to diminish our devotion to all other suitors and crystallize our allegiance to God.” Spending a substantial amount of time with God on a regular basis is not only a command the Lord gave us, but it is also essential to life. Time in worship allows us to be renewed in a unique way. Enter boldly into the Lords presence’s and worship him fully.

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.

myfight2

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.

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.

A Caregivers Perspective. Part One.

Being a Mom of a Chronically Ill Child

Written By: Eileen Guyadeen

Being a caregiver of one who is chronically ill comes with countless challenges. Caring for an ill child is one of the most difficult things to do. Those who are ill rely completely on their caregivers. Being a caregiver can be a lonely, overwhelming, and blessed road. This post is to honor all caregivers, especially my own, my mother Eileen Guyadeen. Without her I would not be where I am today or who I am today. I could never express enough gratitude for all she has done for me.

-Victoria

caregiver-burnout-presentation-epilepsy-education-exchange-2014-4-638

My daughter Victoria who writes this blog for chronic ill people, ask me if I would write something for it. I will start at the beginning, Victoria was born on my birthday which is January 28, 1994. She was a healthy baby at 6 lbs 8 oz. A blessing in every way possible, especially when my own doctor told me it will be nearly impossible for me because of myself having endometriosis, and like I told the doctor he is not God, and I truly believe with God all things are possible. My pregnancy went pretty well, listening to my doctor and doing whatever I needed to do to have a healthy child.

19227_158558510959951_595662122_n

Victoria was an active child by the time she was two and a half I had enrolled her in ballet classes, and she simply loved it too. She was small for her age and I kept her first ballet and taps shoes for my keepsake, because the dance teacher had a hard time finding things to fit her. She always loved playing outdoors all the time, during the summer she played in her pool, with her toys, and even loved reading outside all thru the beginning of her teenage years. In every way possible Victoria was always an active child. However over the years since she was a baby Victoria always seem to get a lot of viruses, doctor couldn’t always explain it to me why she did, always missing a lot of school. I remember by the time her ninth birthday rolled around she had a lot of stomach problems, she was out of school for three months, I finally started to record everything she ate and it was the diary that was making her so sick, so I cut it out from her diet. I spent plenty of times in the emergency room with her stomach problems never to know what was going on, and more important never an answer for what was going on.

1512607_450376568444809_4447055495680873063_n

By the time she was in middle school when I took her to the doctor for the problem, her doctor thought she was trying to get out of going to school. I brought in her report card showing this child was an honor and high honor roll student, and loved being in school. Thru out high school my daughter’s health got worst, going thru five operations in four years. Her health got worst by the time she was a junior in high school that she was on homebound for school. By the time her senior year was about to start the principal of her high school share with us if Victoria miss more than ten days of school she would not be able to walk at her graduation. So with that statement Victoria ask me if she could Cyber School her senior year, and I agree that she could. She finished her senior year with 3.7 GPA, the night of her graduation it was very painful for her to walk at the ceremony, and I cried with her and said I know however you did it with honors in spite of your pain.

10330511_336330949849372_8439169349138009480_n

Since Victoria graduated from high school things for her with her health has gotten worst. Doctors never can make up their minds for a treatment plan for her, it makes a person’s head spin. I have been ask so many times, how I do this with my daughter’s health. My answer to the question is my faith in the Lord Jesus Christ. With everyone appointment rather a doctor appointment, a trip to urgent care, test, or even the emergency room, and hospital stay, I carry along with me my Bible, why because I begin to search the scriptures for God’s promises. In the book of Jeremiah 29:11 it says For I know the plans I have for you declares the Lord, plans to prosper you, not to harm you, plans to give you hope and a future.  Victoria is a gift from God and I do believe that he loves her even more than her dad and I could ever love her.  Every time my daughter cries in pain, I say to her that God didn’t give us a spirit of fear, and I can do all things thru Christ who gives me strength (Philippians 4:13) we have cried together, as well as something more important which is to pray together. For God to give her the strength going thru this, as well as wisdom for her doctors, to see what He sees inside of her, because Jesus is the great physician. It is never easy, right before my daughter went off to college I had a meltdown. Yelling at God what did my daughter ever do to deserve this horrible disease, and then finally after I stop being angry at God, I heard a voice in my heart then why my son (Jesus Christ) in your place on the cross, I never ask that question again. I am always asking God for the strength thru all of this, we travel two hours each way to her doctors, and yes there has been many times I am total drain with running back and forth. I also have two other children to care for, which at times I feel as thro I have short change them thru this. I try to remember different things to get me thru, Stop, Drop, Kneel, and Pray, I have relied on God to get us thru this with my daughter. Jesus never promises anyone that once we accepted him as our own personnel savior, that our lives would be easy, he promises , surely I am with you always to the end of time (Matthew 28:20) I have seen my own personnel walk with Christ change for the better. I wanted to show Victoria, as well as my other two children, that life can become very hard for us at times, and thru those difficult time we need to run to the Lord, not away from him. Lean on Jesus and give him our burdens. In the gospel of Matthew 11:28 Jesus says these words Come to me, all you who are heavy burdened, and I will give your rest, Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden light. If anyone ever read the poems Footprints in the Sand, as you read these words it says, Lord you say that once I started to follow you, you would never leave me, so I don’t understand why was it at the difficult times I saw once one set of footprints, and the other times there were two. He replied my precious child during those hard times, it was then that I carried you. So I can picture during these hard times Jesus is carrying my daughter. Victoria is in the process of finishing her second year of college, in which she has been doing on line for a while. In thru all of her pain, doctors, test etc. Victoria has manage to be on the Dean’s list at Sussex County Community College, with a 4.0 GPA, as well as being inducted into the international honor society this past March. In the fall she will finish her BA degree at Centenary College which is not far from us, and then hopefully on to Drew University for her Master degree. Thru all of the medical problems that my daughter has gone thru so far, I have totally relied on my church family for prayer, as well as other family or friends, because pray to me is an essential tool we need to have with our daily walk with Christ. For me thru all of this I continue to walk with my Lord, with prayer, studying the scriptures and being involved in my church and just serving him. I continue to thank God for choosing me to be Victoria’s mom, I have been the one who has been bless. Yes it has been difficult with her disease, you see she has lupus which is an autoimmune disease, however it doesn’t define who she is and that is she is the daughter of the most high king Jesus Christ.

11074702_10206517299077962_6986012901624926770_n

Brief Update & Summer

Originally I had a lot of blog posts plan for May and Lupus awareness month. Sadly, due to being in the hospital and trying to recover from it, I haven’t been able to blog at all. My body is still drained. I have been battling a lot of weakness and pain still. Sadly my treatment plan has been impacted by my hospital visit. I am no longer on  methotrexate or Benlysta. Not having those meds have negatively impacted me. Currently, I am on a lot of Prednisone. I am thankful for the help from it, but like anyone else I look forward to eventually coming off of it. I do really well on Prednisone in general. The only side effects I encounter are moon face, minor mood swings, trouble sleeping at times, and I clean a lot on it. In perspective, it is excellent. It has also helped me maintain my weight. My weight has stayed the same despite not eating for ten days. I am still seeing a lot of doctors and going through medical testing. Usually one or the other weekly.

Getting my strength back has been a challenge. I feel extremely run down; like I am dragging my body each time I move. I have had to rest so much due to the extreme weakness. Some days I feel as though the only thing I do is rest. It is frustrating.

Yesterday, I finally completed all my work for the semester. I am thrilled. My hope is to be able to work a lot more on my blog now. I am relived to be on break. There is not much I can do this summer due to my health. Because of my Lupus I get extremely sick from the sun which limits me. I will be utilizing my summer to prepare for the fall. I will be going away to school. The school is about an hour from my house, close to other family, and closer to my doctors. I am extremely excited. I have already begun ordering my text books for the fall semester. I enjoy going ahead with my school work. I find it works out best this way if I have a bad day I can rest more without it interfering with my school work. My plan is to read and outline as much as possible for my classes and to listen to related lectures on YouTube. I also have a nice pile of books to read for fun.

Hopefully, I will go back to posting regularly on here. My apologizes for not posting much, especially about Lupus awareness month. Thank you for your understanding. Sending lots of spoons, prayers, and hugs.

Share in the comments your plans for the summer.

The World Doesn’t Pause

The world doesn’t pause when your chronically ill. This truth hits too hard, too soon. A chronic illness soon becomes yesterdays news. People don’t understand that chronic is just that, it is chronic. It doesn’t take a vacation (though that would be great). It is something that we deal with every second of every day of every week of every month of every year. Symptoms may vary, we might have good days, but it is something we need to always be mindful of. People get frustrated that you aren’t getting better. Frustrated that you cancel plans. Frustrated that you can’t do the things you use to do. Slowly one by one the friendships fade. They don’t want to deal with being friends with someone who is sick. The promises that they would always be by your side has been shred.

The world continues forward full speed ahead. It didn’t pause when I stepped into the OR, the doctors office, or went for testing. This fact is plain as day. Yet sometimes it hits me in the face like a two by four. And the tears stream out wildly. The realization sets in of the events that I missed. Those events that everyone makes a big deal out of and you obsessively ponder moment after moment. Sure the events themselves might not be so glamours but the thoughts of them and preparing for them are. Such as prom. The remainder of my examples fail to meet the expatiation of a typical American my age, like a mission trip to Africa (Or any where else for that matter), spending the day at the beach, or going on a retreat. Yes, I am aware there is no correlation between these events other then I feel like I missed out on them to some extent.

Losing friends is an aspect of being chronically ill. Life isn’t like a movie where everyone is super supportive, helpful, and understanding. I never expected that many of mine would desert me. It leaves me utterly heartbroken, but I do understand to an extent. They have their lives, they are moving forward and embarking on new adventures. I am geniuenly happy for them.

That though is not my reality. I am still fighting for my life. It can be discouraging and frustrating for me to watch via Facebook my friends or acquaintances living life doing the things my heart desperately longs to do. It has been especially difficult to see people I know out there serving on the missions field. God has blessed me with a heart for missions. However His calling was not what I had expected. He has called me to serve in microscopic ways currently from my room or the urgent care bed. To run a Facebook page a simply encourage people. I know in my heart I am where God called me to be, but it is difficult at times. There can be discomfort in every season of life which is why it is essential to wait on the Lord and remember this is only a season which will gently come to an end.

ecclesites

God has used my chronic illnesses as a tool to shape me into the person who he crafted me to be. Some people don’t like the fact that I have changed, but the truth is we all grow and change regularly. Many do not understand the daily struggles of chronic illness. A good day now looks nothing like a good day two years ago, though I hope my good days will improve.

Coping with the world racing forward, as we are stuck in this spoonie world is a challenge. Like all aspects of spoonie life, we adjust and we learn to thrive despite the set backs and pain. One thing that has helped me adjust to the spoonie world is connecting with other spoonies. There are many online resources such as Facebook pages, private Facebook groups, YouTube Channels, and blogs. Talking to other spoonies helped me find my new spoonie normal. For more tips on coping with chronic illness check out my blog post :https://chronicallyhopeful2014.wordpress.com/2015/01/12/coping-part-two/

Share in the comments your experience with the world moving forward while you are stuck in the spoonie world.

My Faith

I’m fairly certain that I have mentioned my faith on my blog a couple of times, briefly. I have been a Christian nearly my entire life and my faith plays a big role in my life. I was saved at the early age of three years old in Sunday school.  People tell me from a young age I knew a lot about the Bible. I had an extremely close walk with God. I would tell my mom that God talked to my heart. I understood that prayer was a dialogue not a monologue. I understood the meaning of communion and a lot of Bible stories. I adored going to church, Sunday School, and Vacation Bible School. With all my heart I wished that Sunday School was five days a week and actual school was one day a week. Things made more sense to me at church and I fit in much better.  I counted down the years until I would be able to join the Youth Group. My favorite television shows included The Donut Man, Veggie Tales, Mrs. Charities  Dinner, and other shows on the Christian station. Outside of the American Girl Doll books every book I read had a Christian aspect to it. Despite the fact I was a shy girl, I was bold and confident in my faith growing up. I wasn’t afraid to speak up about it, even if that meant I did not have many friends and that kids would tease me. It was me and Jesus and that is all that mattered to me.

FAC11306

Once my middle school years rolled around I overflowed with excitement because I was finally old enough to join the Youth Group. I was extremely involved in my church during my middle school and high school years. Anything and everything I could do, I did. I spent as much time as possible at church. During my middle school years in addition to Youth Group I volunteered at every function the church had, was in the bell choir, puppets, and attended every youth group meeting. I enthusiastically participated in 24 Hour Famine. Just before we broke our fast I grabbed my friend informing her I couldn’t see, then passed out. Once I woke up I wanted to know when the next famine was. Despite passing out I had a lot of fun.  I did not have many friends at school so I would bring my awesome looking Revolve Bible to lunch to read. (If you are a teen girl check out the Revolve Bibles! They look like magazines, are super cool, and have lots of epic things in addition to being a Bible.)

download

Even though I struggled with my faith a bit in high school, it was still vital to me and I was just as involved in my church. I went on missions trips with the Youth Group and feel in love with mission work. I went on several retreats as well. I still adored reading. The Christy Miller series by Robin Jones Gunn impacted and changed my life. During my teenage years I battled some depression. It was difficult but in the end I became closer to God. I learned many valuable lessons through that chapter. Things changed in my home church, some ministries crumbled. I was on a committee and still volunteered frequently. I also helped run a retreat for five years. When I was sixteen years old I went to Taize France with the conference through my church. It was a pilgrimage and an indescribable experience.

1935553_1173294459259_2694011_n

img_2463

My dream had always been to go to a Christian college, which is what I did once I graduated high school. However that was not God’s plan for me. (Of course I was less then happy about it). The school I choose was three hours from home. I had high hopes for my health. I thought the doctors there would be the best and would help me feel better. But that was not the case. None of them wanted to help me and my health quickly declined. After finding blood in my urine over Thanksgiving break I had to stay home indefinite.  Having to come home was bitter sweet. I knew I had to do it yet I wanted to prove that I could be on my own. A lot had changed in my home church, as I mentioned before. As much as I loved everyone, I wanted a fresh start. Something different. But that’s not what God had in store for me.

images

I have been back home for a little over a year now. Things have gotten better at my home church. The spiritual growing pains have eased and I am able to see how blessed I am to have my church family. My walk with God isn’t where I want it to be. There is always room to grow. I have learned to trust him in new ways. I know that He will guide me and provide for me everything I need. Though I don’t know what the future holds, God does. I am content where I am right now, waiting for His direction and learning.

God Bless. Sending lots of Spoons, prayers, and hugs ❤