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!

Back to College: Organization

New Year. New Semester. School break has a habit of flying by. This is my second semester at Liberty University Online. Once again, I am taking twelve credits. The first eight-week term I am taking  Introduction to Christian Counseling and Psychology of Personality. The second term I have Philosophy and Physiological Psychology.

My plate is full, in my personal option. I have my Remicade infusion at least twice this semester, two follow-up appointments, and a new doctor visit. Additionally, as you know I assist in leading two Bible studies online as well as running a weekly event Bible Study Live. I teach Sunday School and assist as much as I can with the children Thursday evenings. Of course, I spe nd time talking to my friends, reading, time with my family, and working on Chronically Hopeful.

Even with being busy, I keep school as a priority. I have gotten school planning down to an art more or less.  Organization is key. I am thankful that my professor upload the syllabus the Wednesday before classes begin. This gives me plenty of time to do my insane planning. Once I have printed the syllabus and class schedule out I write down my two-week goals list.

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Just a free printable I found on Pinterest.

Around Sunday I write down in my planner what needs to be done each day. Currently, I have The Happy Planner. I decorate the pages with various colors, stickers, and Bible verses. From there, each night before bed I write everything on my white board so that I don’t forget to look in the planner for what needs to be done. It might seem a bit complex, but it works.

If you already have your textbooks for classes, I recommend at the very least scanning the first two chapters. Ideally, if time allows read these chapters, you will thank yourself later.

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Lastly, I want to share with you some Bible verse that I am praying over this semester.

“He has filled him with God’s Spirit, gifted him with wisdom, understanding, knowledge, and skills with a variety of crafts” Exodus 35:31

“The wise will pay attention to these words and will grow in learning, and the discerning will receive divine guidance” Proverbs 1:5

“Now to the God who can do so many awe-inspiring things, immeasurable things, things greater than we ever could ask or imagine through the power at work in us” Ephesians 3:20

 

2016 Major Moments

Another Christmas races through our lives. The season always slips by in a blink of an eye. Shortly after another year kisses us goodbye. This year is elegantly coming to a close and we are able to once more reflect on the moments which have shaped the year. Each year shapes our lives and our character. Each year we learn, grow, are filled with love and joy, and shed many tears.

This year began with a shaky start for me. A few short days after the new year, I was admitted to the hospital due to extreme pain levels. They admitted me to the surgery floor fearing my intestines collapsed or did something funky. I had two Gastros on my case who bickered back and forth accomplishing nothing. I meet another Gastro while admitted who became a permanent asset to my medical team. We tweaked my treatment plan.

My Ulcerative Colitis continued to flare. Sending me to the ER after over eight hours of vomiting. Steroid doses were up and down. At the same time, I began my first online Bible study. Featuring the book I Know His Name by Wendy Blight. I honestly, I little hope for learning anything from the study and went into it with some doubt due to bad experiences in the past. However, God deeply blessed me beyond my dreams. He used that study to change my life forever. Shortly after, I joined God-Living Girls a support group for women with chronic illness and chronic pain.

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Shortly after, I joined God-Living Girls a support group for women with chronic illness and chronic pain. I adore this support group. There are many thriving ministries online. I encourage women of all ages to check it out here God Living Girls.

 

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Sadie watching a sermon from our Online Chruch 

 

 

In April I was nominated for the Psychology honor society, better known as Psi Chi. Then in May I graduated with my Associate degree. Shortly after, I began leading Online Bible Study. In addition, assisting in online ministry.  I mainly assist in running two Bible Studies and do a Bible Study Live event about once a week.

I began pursuing my bachelor’s degree at Liberty University Online in August. I adore the online program here. To my surprise, I have thrived in the program beyond my dreams. I have access to tutoring, an advisor, and the library. Additionally, I began assisting with Sunday school at church. I teach the teens, however, if I don’t have kids, I assist with the little ones. They always have me laughing.

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My Gastro retired. So I began seeing another new Gastro. I am grateful this one is compassionate and well educated. We began paperwork for Remicade over the fall.

Then in October, I had another kidney infection along with stones. I also got to have a lovely weekend with my friend and visit Liberty. The trip to Liberty was one of the highlights of my year.

In November, I stopped 6 MP and began Remicade. A difficult transition. I have done two doses. It is an adjustment period.

December my friend and her family visited.(Another highlight!) While I was away with my friend I began thinking more about becoming more independent. I decided it was time to apply for a service dog.  I also got approval to move forward in the service dog process. I just began the process so I have a long way to go but it is progress and I am excited!

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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. 

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.

Everything But The Kitchen Sink

I am thrilled that finals week is finally behind me. Whoever invented finals is not my best friend. I love school, but finals week is too much stress. I will be graduating this week with my Associates, finally. Then a summer course, and I am completely done with community college. There are a few things in the air in reference to where I will be continuing my education at. Both my options are great. I am trusting in God to direct my steps and I am excited to see where He is leading me.

A few days before finals, I passed out for about ten minutes, while taking my cat to the Vet. (Poor Kitty was scared outta her mind). I didn’t have my typical warning signs. I am doubtful, it was just POTS, but then again who knows. Hours later I went to the Emergency Room.  My doctor isn’t clear about what an emergency is, therefore I have to be a pain and call to find out. The conclusion of the visit was I did not have a heart attack and no bleeding on the brain. I am going through a period of falling and dizzy spells once again, which is irritating. I have had intense muscle  pain in my legs which has made me wonder if it’s som how related. I have discovered a few things that help a tiny bit with the muscle pain: Village Natural Soap, Dr. Teals Pure Epsom Salt Body Oil, and tiger balm. The soap and oil are excellent for chemo skin. These are the first things that have helped my chemo skin.

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I am back on steroids for a short amount of time. The goal is to be off sometime in June. I switched from Methotrexate to 6 MP also known as Mercaptopurine. 6 MP is also a chemo and the dosage is higher. I noticted there isn’t as much paticent information as Methotrexate. I have been on it almost a month. I take it after dinner because in the beginning I was having migraines. The first two weeks was difficult. My assumption is because it’s a higher dose of Chemo. If this doesn’t give me the assistance I need we will be adding a biologic. Personally, I am comfortable with this option, more than ready to begin, and I think it is a good step. Many meds help both Lupus and IBD. Right now, it is another waiting period, which is always hard.

Currently, I am able to eat which is always exciting. I have a lot more options with food on steroids. In moderation, I can do fruit, juice, and small amounts of veggies. Being able to eat healthy is a treat.

We have had a lot of rain lately where I live. My hip and arthritis in general, have been less than happy about this. I am still not sure what is going to happen with my hip. Still having issues finding a doctor. Life is complicated with a chronic illness, as well all know.

Here are some pics of the Lupus hand sign from awareness day:

 

I will be posting more on the blog now that the semester is over. I have been working hard on a few posts and I am excited to share them with you! How have you been doing? Let me know in the comments.

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Oh! And by the way, I have made a new e-mail for the blog, being that I got locked out of my old e-mail after my concussion. hopefulspoonie@gmail.com

Lupus Awareness Day

Lupus awareness day posts never go how I would like. I always have this awesome vision, but then life happens school gets hectic and Lupus ruins my plans.

Happy Lupus Awareness Day! Get your purple on to show support and raise awareness. Lupus awareness day is about educating people about Lupus and also celebrating those who battle the illness daily with courage. We can only have a future with NO Lupus if we KNOW Lupus. A little education goes a long ways.

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It is hard to know what to say because Lupus affects every detail of my life and those around me. Everyone I know with Lupus has been affected in different ways, but one thing is the same this illness has changed our lives forever. We are not solely define by Lupus, but we are reminded and impacted by Lupus every second.

Our normal as young women with Lupus is very different from healthy young women. Personally, I don’t view my life as abnormal. It’s not until I talk with a healthy friend that I remember I need to adjust the way I talk and that they don’t understand the medical terms I’m using. Having friends with Lupus has given me a sense of normalcy. We laugh, talk, and swap stories like any other twenty-something-year-old.

What is it like to live with Lupus? The symptoms can be overwhelming. It is a lot to take in for a healthy person. It is difficult to explain. Every day is different. For me living with Lupus means joint pain, fatigue, and sun sensitivity daily. Often I have rashes or hives, bruises, headaches, bladder pain, chest pain, and hair loss. No two cases are the same. Lupus is complex, making it difficult for health care professionals, caregivers, the support system, and the person battling Lupus.  With Lupus, the autoimmune system can attack anything.

Take a moment today to learn something about Lupus or talk to someone who battles Lupus, you will be surprised how much you can learn.

Snow Day Update

We are getting all the snow we have missed earlier in the season where I live. My mom and I heard it could keep snowing until Monday. You never know with the weather. I am thrilled that my family is safely inside. I pray that you are safe and warm this snowy Saturday.

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The snow has never affected my pain levels- until this storm. Last February I had a POTS episode where I got hurt from passing out apparently aggravating and changing how my POTS reacts to things. This morning was a bit difficult including back pain and a migraine. Like many Lupies, my doctors question if Fibromyalgia is a part of my pain. Some doctors tend to blame everything on Fibro and downplay another illness causing chaos. Let’s be real it can only do so much and the medical field does not have enough education on it. I know many of you struggle with Fibro and my heart goes out to you. It is my prayer that doctors will take us more seriously and that more research will be conducted and better treatment will be put into place. Jumping back to POTS for a moment I did experience two simple falls recently irritating each hip. I am wondering if it could be weather related.

I wasn’t planning on the mini Fibro rant but it is relevant. Anyways. Update time. I have been out of the hospital for a while now. This second I am feeling great (Compliments of Tramadol).  I have seen a new Gastro. I am hopeful and a bit nervous about the switch but it absolutely needed to be done. The doctor was ready to put a new treatment plan into place and get things under control. I am back up on Prednisone, 25 mg. When I saw her about a week ago she also prescribed a Chemo. Two Chemos and Steriods seems like a lot to me. The option is excellent but not ideal. I have already had issues with my blood counts. Therefore, I have been researching other options. After hours of insurance calls, I have the name of a medication that does not interact with any of my other meds. It is a general anti-inflammatory. My hope is the doctor will agree to give it a shot. Either way, I am looking at about two months or more for the medication to begin working.

Either way, I am looking at about two months or more for the medication to begin working. The plan is to be off Steriods sometime in March. The combination of two Chemos and Steriods made me extremly emotional. Every little thing was giving me excessive anxiety. All I wanted to do was cry. And I did do that.

The increase has been a blessing. I am able to eat some and drink plenty. I can feel the difference now that my body is absorbing food and medication. I have less weakness.

Before the increase of steroids, my injection was making me feel sick. I am so grateful that it went much better last night. I look forward to the day that I am on a more stable treatment plan. It can also be nerve racking at the time thinking about life off of steroids. More than anything I want to be off. At the same time I know in my heart my body will be much different. It won’t be the same as before Prednisone. It will take time to adjust.

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Outside of the health roller coaster, I have been reading and focusing on Chronically Hopeful on Facebook. I got a 20 dollar gift certificate for Logos for my birthday. I think it is awesome. I got two books and a Bible Magazine.

Weather permitting, I will begin school Monday. I am taking History, Effective Speaking, Forensics, and Spanish.

Leave me a comment below, share how you are doing, what’s new and if you’re in college what classes you have this semester.

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.