Welcome December

I adore the Christmas season, it is absolutely magical. Beauty overflows all around from stunning lights to warm smiles to traditions and so much more. Christmas carols sweetly fill the air. The Christmas season brings joy as it reassures us gently that things will be okay. It helps us connect with our inner child reminding us of the wonderful Christmas memories. At the same time, it encourages us to move forward filling us with a hope like no other. It unites us with those we hold dear in our hearts. I cherish every aspect of Christmas.

Unfortunately chronic illness and the stressful demands that go with it does not take a holiday. The doctors appointments, treatment, and testing still must be done. Chronic illness tends to complicate things and get in the way of our joy during this season. It is easy to lose focus of the beauty in this season when we are consumed with emotion and pain. When the world seems to be caving in on us and everything seems to be falling apart. Chronic illness isolates us. We feel the effects more so this time of year. Finding a balance between doing things and resting becomes more difficult. For some, this season is depressing, reminding them of all they cannot do.

I hope you are able to take the time to rest and reflect this holiday season. Take to reflect about all the ways you have grown as an individual, all you have accomplished, all the blessings in your life, and everything you have overcome the past few months. You, my friend, have come so far. I am proud of you. You deserve to take time for yourself this busy season. You are an inspiration. Your story is breathtaking and laced with beauty along with encouragement it will change lives. I pray your strength is renewed. The Lord will bless you greatly this season, be open to all he has to offer for you.

I pray you would have a flare free Christmas season. I hope that despite your pain you are able to enjoy this season of blessing. Cherish every moment with those you hold dear to your heart. Hold onto the Christmas spirit. I pray that this season would bless you with little to no pain, plenty of spoons, memories, joy, and love. “It’s beginning to look a lot like Christmas.”

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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!

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.

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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.

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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.

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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.

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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.

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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.

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.