Shake it Off

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

 I cannot tell you how many times people have been disrespectful or stared at me because I use a wheelchair in a store. The majority of the time people either stand in front of me, unwilling to move or practically run away. People act like I have the plague.

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

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

Too often we hear phases like: 

But you don’t look sick

You need to be more positive

Have you tired…

You’re too young to be sick

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

You’re just having a bad day

You need to get more exercise

It’s all in your head

Maybe if you got out more

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

Sending lots of spoons, prayers, and hugs. ❤

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!

College Chatter #Liberty

Stability. It is something most people crave. A schedule to glide through day after day it might sound boring yet there is comfort in the familiar. When one has stability he or she can  plan to do things.

This is one of those things you don’t realize how comforting it was until it vanished. Stability takes on different meanings for a healthy person compared to someone who is chronically ill. Stability is one thing I currently do not have enough of.

This past May I was able to complete my Associates Degree at my local community college. I had been the first student to complete a degree online. By the way, if a school does not have an established online program I do not recommend going that route. By God’s amazing grace, I was able to thrive, however, there were times of extreme frustration that could have been easily avoided.

I had been hoping that my health would be more stable than it is currently. I am still struggling with abnormal POTS symptoms such as tremors, collapsing, and slurred speech. And of course, battling my immune system.

I am beyond thrilled to be continuing my education through Liberty University’s Online Program. There is a wealth of resources such as touring and an online library . The online program is split into different terms in each semester. There are eight weeks of two or three classes than eight weeks of a different set of classes. I am entering into week two of developmental psychology and contemporary worldviews.

In addition, to the stellar academic program and access to online chapel Liberty also offers an online hangout for online students to interact with one another. It is meant to be a cafe type setting. It  might not be ideal, but I will take what I can get at this point, which I am sure any spoonie would understand, as many feel like they are starving for social interaction.

As a new academic school year arises, I want to remind you, there is hope for every student, there is hope for everyone, even you. “People do their best making plans for their lives, but the Eternal guides each step.” Proverbs 16:9 The Voice In general, we are more capable than we give ourselves credit for. A little encouragement goes a lot farther than imagined and baby steps are actually giant leaps. 

Helping Other Despite Illness

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

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

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

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

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

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

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

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

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

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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.