Shake it Off

Living with a chronic illness is a challenge beyond words when encountering people who don’t understand. We have all had an experience of rudeness beyond belief. There are stairs when taking medication in public. Rude remarks when using a walking device. 

 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. I have heard over the few years I have used a wheelchair in a store that I am too young to use one or too pretty. The stairs and remarks make me feel like I owe people an explanation. However, I do not need to explain my life to everyone I encounter. If the right doors are open to education someone I don’t mind but there shouldn’t be a social pressure to explain it all. 

 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 their way to upset us or to be rude. They offer unnecessary options on how to break free of the chronic illness chains.

 

Too often Spoonies lose friends due to their illness. Some people want absolutely nothing to do with us while others act strangely 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 phrases like: 

But you don’t look sick

You need to be more positive

Have you tried…

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

Hold your head up high, cause it’s gonna be alright. You have so much courage. You are an inspiration for thriving despite every setback. Sending lots of spoons, prayers, and hugs. ❤

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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!

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. 

Uninvited

 

Less than. Left out. Lonely. Rejection wasn’t new, yet this time, it would be less painful to rip my heart right out of my chest. I poured out the emotions, “God they promised they wouldn’t leave me. How could they?”I had spent plenty of time wandering the playground alone or reading my Bible in silence at lunch. I figured shedding the shell of shyness was key to overcoming rejection, to leave behind those times I was uninvited.

Entering into college I felt like I was on top of the world socially. I had my youth group, the teens from the retreat I passionately poured into my high school years, and the girls on my floor. (Of course, finding a guy friend in order to get a ring by spring couldn’t hurt. Just Kidding! If you don’t get that joke go find a kid who goes to a Christian college.)

I was hopeful that even though I had chronic pain I would soon have solid answers to it and a treatment plan. Steroids don’t make life as a college girl easy. Emotions explode pretty much everywhere in a confused mess. Nothing was going as planned but it could only get better, or so I thought. Thanksgiving weekend I found out I had a triple (Yes I have three kidney’s) kidney infection that was severe lasting a total of four months.

I had always reached out to a particular group of friends checking in on everyone. I figured if no one heard from me someone would check to see if I was alive. I desperately wanted to just have a conversation about anything. Once someone reached out it wasn’t in a loving manner, leaving me in tears. From that conversation steamed rejection from a group of Christian friends. I felt unwanted, isolated, and brokenhearted.

It is a few years later as I sit on my bed writing this. My life is anything but typical.  God is on the move in my life providing me with a small group of friends who I cherish dearly and like a weirdo I do point it out to them that I am thankful they are in my life. The Lord is providing me with women to pour into through online Bible study, which I am forever grateful for. He has blessed me with the stability and faithfulness of my mom who has refused to walk out or give up. There are many days- even in those ‘safe’ places where I feel less than, left out, and lonely. Rejection is a knife leaving a deep scar regardless the colorful story attached.

Past rejections impact daily life more than we are aware of. Making us self-conscious. We throw up walls and harsh words out of fear. It seems at times we girls take things to heart a bit more.

 

I would like to personally invite you to an online Bible study featuring Lysa TerKeurst new books Uninvited.

“In Uninvited, Lysa shares honestly from her own struggles with rejection and gives readers concrete truths to combat the lies our old Enemy hurls our way. You can stop feeling left out, because even when you are overlooked by others, you are handpicked by God. You can change your tendencies to either fall apart or control the actions of others by adopting healthy ways to process your hurt. You are designed for a love without limits, a love that will never let go.

With biblical depth, gut-honest vulnerability, and refreshing wit, Lysa helps readers:

• Release the desire to fall apart or control the actions of others by embracing God-honoring ways to process their hurt.
• Know exactly what to pray for the next ten days to steady their soul and restore their confidence.
• Overcome the two core fears that feed our insecurities by understanding the secret of belonging.
• Stop feeling left out and start believing that “set apart” does not mean “set aside.”
• End the cycle of perceived rejection by refusing to turn a small incident into a full blown issue.”

This Women’s online study will dig deep into God’s word, build lasting friendships, pray with one another, in addition to reading and discussing the book.

Even when you’re overlooked by others, you are handpicked by God.

This post is part of Lysa TerKeurst’s Uninvited Book Blog Tour which I am delighted, excited, and honored to be a part of along with many other inspiring bloggers. Make sure to check out http://www.uninvitedbook.com.

To RSVP: Please e-mail: hopefulspoonie@gmail.com

I will be assisting in leading two studies with the book. The first is God-Living Girls. God-Living girls is for women God-Living Girls is for women with chronic illness and/or pain. The book will be completed alongside Proverbs 31 Ministries from September 6th- October 14th. I highly encourage all teen girls and women to check out God-Living Girls even if you aren’t interested in the study, the group has a lot of excellent resources.

https://www.facebook.com/groups/godlivinggirls/

https://god-livingwithchronicillness.com/

The second group also meets  in a private Facebook Group, which you will be able to join starting August 15th. We will begin September 6nd as well, but we will be doing the study at a slower pace for about ten weeks. Feel free to ask questions!

Please share!

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.

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.

 

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.

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.

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.

Christmas Cookies

Baking is an enjoyable part of the Holiday season. I have been extremely spoiled, every season there is something homemade my mom makes for us from apple sauce to pies to cookies to candy. I always enjoyed assisting her in baking, especially during the Christmas season. It has been difficult for me to bake on my own because of POTS and a lack of energy. I am going to share some cookie recipes with you. Some are spoonie friendly, others just taste good and are worth sharing.

Low Spoon Peanut Butter Cookie Recipe:

Ingredients:

1 cup of peanut butter

1 egg

1 cup of white sugar

Directions:

Preheat oven to 350

Combine ingredients. Bake for about eight minutes

Philly Cream Cheese Cookies

Ingredients:

1 (8 ounce) package of Philadelphia cream cheese, softened

3/4 cup of softened butter

1 cup of powdered sugar

2 1/4 cups all-purpose flour

1/2 teaspoon baking soda

1/4 teaspoon mint extract

Combine ingredients. Allow dough to chill for 30 minutes. Preheat oven to 325. Bake 10-12 minutes. Makes about three dozen cookies.

Shortbread:

Preheat oven: 350

1 cup of butter

1 1/2 cups of all-purpose flour

1/2 cup confectioners’ sugar

1/4 teaspoon vanilla extract

1/2 cup of cornstarch

Being on your feet for too long is draining. I recommend sitting while making cookies. Using an electric mixer can help conserve energy as well. Take breaks in between, if needed.

What are your spoonie baking tips? What is your favorite Christmas Cookie recipe?

Thanksgiving

I simply adore Thanksgiving. It is by far my second favorite holiday. My family and I do not do anything over the top, however, the day is golden to me. I spend the morning watching the Macy’s day parade and making some sort of craft; usually a blanket. Then I get ready, which consumes the majority of my spoons. Our neighbors come over and we have a lovely traditional Thanksgiving dinner which is anything but quiet.

Thanksgiving Day is a magnificent day in which we gather with those we cherish to celebrate all the blessings the fill our lives. When we sit down to reflect on our blessings we noticed how much we have and often times how much we take for granted.

As a chronically ill twenty-one-year-old, my gratitude list is anything but typical. I am grateful I have a diagnosis, decent doctors, insurance, and a treatment plan. I am thankful for the online support groups that I am a part of, for my family, church family, and my mom. I am thankful beyond words that I have not been in urgent care for seven months now! Spoonie victory right there. I am thankful for being admitted in April. I am thankful for the slow progress I am making. 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.

I hope you cherish this precious Thanksgiving day. I pray you see the blessings in your beautiful life. I hope you find joy today and comfort as you spend the day with those you love. Sending Thanksgiving Day Spoons, prayers, and hugs. Please share in the comments what you are thankful for.

‘Tis the for midterms, testing, and finals. Tests were never my favorite part of school. Testing has become more of  challenge because of my illness. Brain fog interrupts as well as symptoms. Ideal testing conditions rarely happen, but I have learned to work through it. I am going to share with you a few spoonie academic testing survival tips.

Prior to the test gather as much information as you can about the test. The more information the better this way you can plan accordingly.  How many questions? What type of questions (multiple choice, essay, fill in the blank, ect…)  How long is the test? Are you able to retake the test? This question is outside of  the norm, but I have taken two math classes that allow the student to retake quizzes as many times as they want.

If you are receiving accommodations make  your professor is aware of this and applies them. I get extra time. However, none of my professor remember this. I always send out an e-mail before the first test reminding them of my accommodations.

Where are you testing? Do you need to schedule to test some where different? Most schools offer somewhere other than the classroom to take tests if you receive accommodations.This is a great option. When I tested in a different room I was by myself or with under five other people, therefore it is much quitter.

If you  are testing at home it is important to set up your testing space effectively. Personally, I test in my room. I usually aim to take my tests in the morning. If the test is open notes I spread out everything I need. Of course I have additional material such as a calculator or text book or paper and pens near by.

I have my just in medication which includes my tachycardia medication, nausea medication, Tylenol, and my inhaler. I always have a minim of two drinks; hot tea and water. If you have POTS consider having Gatorade on hand.

For longer tests I have a snack on hand. My heating pad is never far away. I set everything up at my dresser (more or less it is my second desk). I am able to put my feet up on another chair if needed. I am able to sit on the floor or my bed. I also get up and walk around during my test because of back pain. Depending on the test and pain levels I either walk a few feet to my door or down stairs to my kitchen. Walking around helps relive some pain and helps lift some of the brain fog.

I always wear compression stocking. Comfortable clothing. I also have a sweat shirt and blanket near by. Testing at home allows me to control the temperature in the room which effects POTS symptoms.

If symptoms get intense know what to do. If you pass out, once you are stable who can you call and inform about what happened? Or if you end up ‘locked’ in the bathroom because of IBD (or another illness).

I still have not come close to mastering any skills that assist with brain fog and testing. Please comment any ideas!

Six Months

Today is my six month anniversary from being admitted to the hospital where I fought for my life. In addition, it has been six months since I have been in urgent care or the ER. This is the longest time I have stayed out of the ER or urgent care in seven or eight years. I never thought I would be able to say that I stayed out of urgent care for so long. Things have slowed down with my health. During my last major flare up typically I had a doctors appointment, medical testing, infusion, or an urgent care trip at least once a week. It was time consuming and draining.  I feel extremely blessed and grateful to be where I am now. I am also grateful for the medical professionals who cared for me, helped me, and continue to be on my case.

Hitting rock bottom with my health at the hospital was daunting. I can vividly recall, a chatter box doctor going over my medical history and medications several times. Then explaining I shouldn’t be in pain and implying that I should be in much worse condition (not that a 10 on the pain scale is in good condition). No one enjoys hitting rock bottom, but it was a blessing and a turning point. Though there are many negatives associated with steroids, they saved my life. Now they are helping me get stronger and hopeful begin to live again. (Yes, I am tapering.) I know I have said it before, but it is worth repeating, being admitted to the hospital was a blessing.

It is mind blowing for me to be able to say I have not stepped foot in urgent care in six months. I am beyond excited. Today, I am celebrating this victory. My mom and I are spending sometime together. She has been my caregiver and source of support and strength so I am blessed to be able to spend the day with her.