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.

 

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!

This Is Chronic Illness

How the melody began of the symphony “the Spoonie Life” is unique to each of us. However, like a ton of bricks, the news crushed us emotionally, which no preparation could brace us for the sudden shift in song. Lumped into a group of over 125 million American’s who are in daily combat with their bodies due to chronic illness. After all, these are Invisible Illnesses.

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Adjusting to the new role. A list of things we can no longer do. Harsh comments as well as the stairs, seem to greet us everywhere. Friendships fade away. Symptoms and pain consume each day. Functioning seems nearly impossible. Daily medications. Frequent breaks. This is chronic illness.

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Well-meaning doctors increase anxiety levels. Medical testing is never ending.  No one seems to know what to do. At times our health is out of control and all we can do is ride the roller coaster and pray. Help seems just out of reach. This is chronic illness.

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Yet we cling to hope because our lives depend on it. Dreaming. We find that reason to keep fighting. This is chronic illness.

This week is Invisible Illness Awareness Week. A week to honor you and to give you a voice. To equip you to fight your battle a little better. Making the invisible visible. Making those around us more aware. Hopefully, others will understand the reality of chronic illness.

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My friend with an invisible illness, you are brave, diligent, and compassionate. You overcome  negativity.  You have battled your invisible illness gracefully. You are an inspiration. Don’t give up! You are beautiful. You have an amazing purpose and you are making a difference.

More Than an Accomplishment

Good Morning Warrior,

We compare ourselves from the time we rise in the morning till our head hits the pillow at night. Comparison feeds us lies. Consumed with thoughts of never living up to expectations. Negativity becomes the dictator of our day.

Your identity isn’t in the tasks you accomplish. It isn’t in the things yu can or cannot do. Your identity isn’t the symptoms, pain, medical test, or diagnosis. It isn’t rooted in other people’s options or the things you have loss. You are not defined by any flaw.

I wish you could see what I know, the beauty that radiates from your heart and the way your smile glows. The hope that you anchor in others. You are cherished, valued, and worthy beyond words. Your purpose is amazing. You are making a difference. You are changing the world. Keep pushing forward- even if you crawl go forward. You are stronger than any trial. You are not alone. I am cheering you on and wishing you a wonderful day.

Sending Spoons,

Victoria

Pictures of The Past

A picture is worth a thousand words along with a few dozen memories and emotions. Capturing the past the heartache of what once was bubbles over.  Sometimes, I avoid looking at my photos, but other days the temptation of a walk down memory lane wins. The days when laughter was plentiful and sleep was not vital.  Staying up half the night with friends was normal. And of course, anything seemed possible. Not knowing that all too soon minor aches would explode into full blown take over your entire life chronic illness.

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I look at the girl in those pictures overflowing with laughter and pure joy. The insecurities going through my mind as a teen now seem silly. Things weren’t perfect, but they appear that way. The past usually seems easier as we look back.  There are still days I miss the people who left me. The friends who said they would be there, but left.

 

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It’s true, you adjust to the chronic illness life, but little things happen that make you grieve your past. I try to not get carried away in the what if I wasn’t sick game or the things I miss. Everyone asks what you miss most, in reality, I doubt any of us can narrow it down to one thing. I miss how active I once was the energy. Being out in the sun or at the ocean. I miss dancing, hiking, and doing mission work. I miss my hair. Not needing to worry about passing out or running to the bathroom. I miss my old bad days.

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All in all most days I do well with being chronically ill emotionally. I have adjusted and know in my heart that God will use all the pain, symptoms, and every other little chronic illness thing for His glory. He has allowed Lupus and these illnesses to be a part of my life, therefore, I am okay with where I am. Yet, I am still human. I become anxious, overwhelmed, grieve, and ride the roller coaster of emotions. After last April, my emotions went on vacation, but they are back and we are learning how to live together once again.

To be honest, most days are hard in some capacity. Currently, this includes minor meltdowns, severe chest pain, dizzy spells, joint pain, and bladder pain. I have another halter monitor (I will do a review- if I don’t throw it in a lake first). A bladder infection with a side of kidney stones. To top it all off my summer class final is coming up. My liver is holding up though I am cautious due to the fact I need to taper off steroids.

This post is a bit long, but I will be doing a Bible Study update post to let you know more about online Bible studies, which I am excited about!

Can you relate to anything in this post? If so, let me know in the comments! You are the reason I share about my life as a spoonie.

Ticks

Technically it is summer. I technically graduated the end of May with my associate degree from community college. I was the first student to complete a degree at this school completely online.  Currently, I am completing my very last course for my associate degree, statistics. I got the midterm out of the way this week. I have applied to an actual online college, just waiting to work out all the details for the fall semester.

Last weekend, I found out that I was bitten by a tick after the tick and I swelled up. By Tuesday morning, I had a decent fever. I began antibiotics as a precaution. I am not too far into the course, but so far it is much better than my typical antibiotic combination. I have been dealing with mild intestine pain and extra fatigue, that I think is related to the antibiotic. I have noticed an increase in joint pain after the bite. I have been given multiple warnings, by my doctors, that more symptoms can appear. I can either run into a flare of all illnesses or some forum of remission with the antibiotics.

Ticks carry more than just Limes Disease. Some include Anaplasmosis, Colorado tick fever, and Tularemia. For a complete list check http://www.cdc.gov/ticks/diseases/. It is essential to check for them and to remove them as soon as possible and properly. Some hospitals or medical centers want to test the tick so you can save it in a zip lock bag.

How to remove a tick

  1. “Use fine-tipped tweezers to grasp the tick as close to the skin’s surface as possible.
  2. Pull upward with steady, even pressure. Don’t twist or jerk the tick; this can cause the mouth-parts to break off and remain in the skin. If this happens, remove the mouth-parts with tweezers. If you are unable to remove the mouth easily with clean tweezers, leave it alone and let the skin heal.
  3. After removing the tick, thoroughly clean the bite area and your hands with rubbing alcohol, an iodine scrub, or soap and water.
  4. Dispose of a live tick by submersing it in alcohol, placing it in a sealed bag/container, wrapping it tightly in tape, or flushing it down the toilet. Never crush a tick with your fingers.” (http://www.cdc.gov/ticks/removing_a_tick.html)

After a very brief google search, I came across https://www.lymedisease.org/, which seems to have additional practical information about Lymes Disease.

 

Honoring God With Our Time

Time is a precious gift that should be cherished. Even with the blessing of a different, perhaps more mature perspective we still have the habit of wishing it away. Who could blame us between pain, frustration, isolation, and layers of symptoms? Cherishing the moment when the moment isn’t all that sweet is not something that comes naturally.

How do we honor God with our time in the midst of a flare? Personally, I have become limited in so many ways and this is a question that has been turning over in my mind nonstop recently. I deeply desire to honor God with every second of my day and to serve Him.

My insecurities boil over, spitting lies like you can’t possible honor God with your time because you are sick, lazy, and useless or look at what so and so is doing you can’t even stand for thirty minutes God can’t possibly use you. He will never get glory from your life. I know in my heart that these are the enemies lies, but when I am drained it is easy to get caught up in them.

It is vital to remember that God’s salvation and love for us, His children is not dependent on our actions. Jesus already paid the price. Salvation is freely ours.

At the same time we can do all things to the glory of God- even the things that make us feel miserable like our symptoms. Pastor John Pipper talks about drinking orange juice to the glory of God,

“But believers can, and this is how they glorify God. Their drinking orange juice is “sanctified by means of the word of God and prayer.” The word of Godteaches us that the juice, and even our strength to drink it, is a free gift of God (1 Corinthians 4:7; 1 Peter 4:11). The prayer is our humble response of thanks from the heart. Believing this truth in the word, and offering thanks in prayer is one way we drink orange juice to the glory of God.

The other way is to drink lovingly. For example, don’t insist on the biggest helping. This is taught in the context of 1 Corinthians 10:33, “I try to please all men in everything I do, not seeking my own advantage, but that of many, that they may be saved” (RSV). “Be imitators of me, just as I also am of Christ” (1 Corinthians 11:1). Everything we do—even drinking orange juice—can be done with the intention and hope that it will be to the advantage of many that they may be saved.”

There are many tasks during my day that are less than lovely, tasks that make me feel terrible, but my prayer truly is that some how some way God will receive all honor and glory from everything in my life. I pray that I would continue to learn how to cherish the time He blesses me with as well as how to honor Him more with it daily. I trust Him to make something beautiful out of everyday.