When A Warrior Passes

Honestly, I have wanted to write this post for a good two months, but it has been difficult to write.

You know once you have transported to the world of chronic illness that one day you will be devasted when someone passes away. However, you are never ready enough for that moment.

I had expected to eventually lose someone in a Facebook support group not someone I went to school with. Two weeks before she passed I ran into her mom while food shopping. I barely remember anyone from high school and it is embarrassing as well as frustrating for me. But when her mom said her name I could picture her sitting next to me in middle school. I had assumed she moved not that she was chronically ill with at least one of my illnesses. I promised her mom I would talk with her and we could hang out. Her mom said they were attempting to get her paired with a service dog. I was so excited at the possibility of having an in person chronically ill friend my age.

I didn’t hesitate finding her on Facebook.I tried to be patient waiting for her to response constantly reminding myself she was flaring. Within hours I found out I was too late and it broke my heart in a new devasting way. I immediately regretted not connecting with her sooner. I know she suffered way too long and things were horribly unfair. She should be going to college and building a life for herself.

Lossing someone who has one of your illnesses or who is chronically ill is extremely different. I have balled my eyes out many of times for a life of a fellow warrior that I barely knew. My heart goes out to the families in a unique way.  I might not have known them well or maybe not at all yet I live a small part of their story. I live the pain, doctors, symptoms… the life of a spoonie.

The grieving seems to be unique to those with chronic illness. There is an element of guilt for living because you know it could have been you. You wonder why it was that person, what if someone listened better, could it have been avoided, or will that be me one day. Frustration with the health care system at times.  Angry with the people who brush us off.

It has been a few months but from time to time she’ll come to my mind. I wish I remembered more about her other than her pretty hair and sweet voice, like an actual conversation. This death has been completely unique in the way it affected me.

Anytime someone passes with a chronic illness around your age it hits home and it is difficult. When you lose someone to chronic illness allow yourself time to grieve. If someone in the chronic illness community you know passes find a special way to say good bye and to pay your respects. When a girl passed with IBD a few weeks back, I found great comfort in leaving her family a message on an online guest book in honor of her.

Regardless of how close you were let yourself cry if you need to.  Give yourself permission to get angry, to feel hopeless, or broken. Emotions are healthy. They are indicators of things going wrong and of heartbreak. However, emotions are not your dictator so once you have allowed yourself to feel you need to slowly move forward. Allow yourself to heal slowly. Seek support from others who are chronically ill, family, and friends. Cherish each moment in life and live them to the fullest as best you can.

 

 

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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!

Sweetbriar Cottage Book Review

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This was the first book I read by Denise Hunter and I was pleasantly surprised. I completed the book within three days. She captured my full attention throughout the entire book.

The story line was uniquely constructed. It is not the typical love story at all. Noah and Josephine Mitchell are under the impression that they are divorced but accidentally discover it was never finalized. A few simple signatures are all that is required. However, that is not what transpires. The two heartbroken people end up spending time together against their free will, discovering there was more to the failed marriage than they realized. Each is strong willed, devastated by the past wounds, and overflowing with sorrow.

Throughout the majority of the story, the two are at odds, especially in their faith. Noah is a believer, in contrast, Josephine’s faith was shattered with an unanswered prayer at a tender age due to tragedy. I think there could have been more depth in the faith section. But overall it worked nicely.

” But when they are forced out into the storm, they must rely on each other in a way they never have before. Josephine finally opens up about her tragic past, and Noah realizes she’s never been loved unconditionally by anyone–including him. Will Noah accept the challenge to pursue Josephine’s, heart? And can she finally find the courage to trust Noah?”

This is one my favorite book of this year, furthermore, I will be checking out other books by Denise Hunter.  Sweetbriar Cottage gets five stars from me. This is a delightful summer read! The winter scenery might help to balance out the hot summer afternoons.

 

What a couple other authors think:

 “Sweetbriar Cottage is a wonderful story, full of emotional tension and evocative prose. Josephine and Noah, though deeply wounded, are easy to love in this story of second chances and unconditional love. Hunter slowly feeds critical pieces of backstory to keep the pages turning. You’ll feel involved in these characters’ lives and carried along by their story as the tension ratchets up to a climactic and satisfying conclusion. Terrific read. I thoroughly enjoyed it.” –FRANCINE RIVERS, bestselling author of Redeeming Love

“Denise Hunter is, hands down, the best romance writer out there and never disappoints. Layered with likable characters, rich setting, and a compelling plot, Sweetbriar Cottage is unputdownable. Highly recommended!” –COLLEEN COBLE, USAToday bestselling author

 

About the author:

Denise Hunter has garnered multiple awards for each of her books, which include being a two-time Holt Medallion Winner for Finding Faith and Surrender Bay. ( She’s also an outstanding drummer!) She lives in Indiana with her husband Kevin and their three sons.

Favorite Bible Verse: Deuteronomy 31:6a “Be strong and courageous and do the work. Do not be afraid or discouraged, for the Lord God, my God is with you.”

Emotional Health: IBD

Personally, I don’t like the words mental health. I feel like it has a negative perspective in society and is associated with more or less being crazy. I prefer the term emotional health, yes I am aware there isn’t much difference but that’s what I call it. Anyways. This post isn’t about which term is better. Today should have been yesterday’s post but the day slipped away from me. We are talking about emotions and IBD. There are dozens of aspects of emotions with chronic illness in general. I am going to just survey this topic in this post and attempt to keep it short.

Everyone is unique in their illness and emotional health. When a person gets emotional sometimes, the medical field blames everything on the emotions not acknowledging it’s a balance. From a clinical point of view, personally, I have low scale anxiety. I had clinical depression as an adolescent, but do not right now. That does not mean I don’t feel depressed at times. It means it isn’t a chronic aspect of my battle that impacts daily life. Most medical professionals cannot understand why I am not mentally unstable, but I say go with it.

Medications impact emotional health as well. Last year, I went through a season where I had no emotions. At least that’s what it felt like. I had went into survival mode than high doses of Prednisone and my emotions went on vacation.  In addition, medication can change how you look which in turn impacts your emotional state.

Even though I am not diagnosed with severe emotional disorders, it doesn’t make the emotions easier to cope with. There are countless emotions that come with medications. Tons of stress and frustration from doctors. The isolation of illness. Not to mention the anxiety that is through the roof. Anxiety with where are the bathrooms. Will I have an accident? Will I be alone forever? How am I going to work? Will it ever get better?Logically I can answer these questions but during an anxiety attack logic only gets you so far.

Learning how to cope is a journey with emotional and physical health. Talk with someone you trust or write. Releasing the emotions is helpful. Being creative is good for emotional health. Many people draw, color, or listen to music. I am a fan of online support groups as well as raising awareness for my illnesses. The Crohn’s and Colitis Foundation also has helpful resources for mental health. In addition, you can check out this Patients Discuss Impact of IBD on Mental Health video. Lastly, a big key to my stability is my faith. It does not necessarily cure an emotional disorder but it makes it more manageable.

 

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Uninvited

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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.

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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.

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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.

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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.
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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.
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!

Fruit of Brokenness

Today, I have a special treat for you, Melinda from  Fruit of Brokenness.

I had to accept it. But I didn’t want to. I had to accept a term I didn’t like for myself. It’s a label used when someone does something horrific like shoot a bunch of innocent people or drown their children. We use it to describe people who are so out of touch with reality or so far outside societal norms that they make us uncomfortable…

MENTALLY ILL.

If you met me, your first thought wouldn’t be “mentally ill.” I mean, I look like a normal 43-year-old mom of three kids… which means I can look a little crazy-frazzled at times, but I’m not the stereotypical unkempt, wild-eyed, roaming the streets talking to imaginary friends and enemies.

I suffer from Major Depressive Disorder. Sometimes my brain goes sideways.

Major or severe, depression is difficult to explain to someone who has never experienced it.

It’s like walking death. Everything that makes you-you carved out, leaving a gaping emptiness that can’t believe you ever really were anything, especially not anything good. You no longer enjoy your favorite things, or anything else. It’s impossible to believe things will get better; it’s impossible to believe that better is your normal.

Some of you may think that faith in God should make feeling like this impossible, that people who claim to be Christians who suffer depression or anxiety must be doing something wrong.

Their faith must not be strong enough.

They don’t pray or read the Bible enough.

They must have hidden sin.

While all these things can contribute to depression, depression is not just a spiritual issue. When churches approach people struggling with mental health issues as if is all only their fault, it is unhelpful at best, and can be dangerous.

Faith hasn’t cured me.

While a correct understanding of God and ourselves is vital for mental health, it doesn’t guarantee we won’t suffer from depression or anxiety.

Faith isn’t a magic cure-all. As with physical illness, mental illness can strike down believers and dog their steps.

As Paul related in 2 Corinthians 12, I haven’t been able to pray away my thorn. I have medication that is keeping the suicidal depression in check, but I still struggle with depression and anxiety and know it would be dangerous to quit taking my medication.

I have a chronic illness that requires physical, mental, emotional, and spiritual treatment. To attribute one too much importance than the others is unhelpful. There’s a glitch in my brain that affects my emotions, my perception of reality, and my ability to think clearly.

At its worst, I believe that I am beyond grace.

But there’s something awesome about God’s refusal to remove our thorns. Our weaknesses are an opportunity for His strength, and also His grace, to shine.

Paul knew this.

God can heal. God does heal. But God doesn’t always heal.

It’s not wrong to ask for healing, but we must choose to trust Him whether or not He sends it.

Whatever God allows or chooses in my life, I need to let Him be God. In and through my circumstances.

A huge thank you to Melinda for sharing her story and offering hope to others. Please check out Melinda’s blog and social media:

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Fruit of Brokenness on Facebook

Melinda VanRy on Twitter

Melinda VanRy on Pinterest

 

Rest

We live life in the fast lane; traveling full speed ahead. Over commitment boils over. We tango with multitasking racing to complete an over zealous achievement list. Our to-do list, family, friends, and much more scream for attention demanding more consistently, simpling depleting us physically, emotionally, and physically. Neglecting much we push forward running on empty. In addition, we feel like we might erupt from stress at any moment.

We need rest as desperately as we need our next breath. Not just physical rest but also emotional and spiritual. Time to reconnect in a meaningful way with our Abba (Our Heavenly Father). We need to be intentional about spending time rest in the Fathers arms. Not giving ourselves excuses about being too busy. Life goes smoother when we rest in the Father and connect with Him.

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Will you sweet friend come to our Jesus now? Don’t wait another moment. Unload all the burdens on your heart, keeping in mind that nothing is too big or too small for Him. Pour every sorrow, burden, and emotion out to Him. Sit quietly in His loving arms as He frees you from the burden and reminds you of His everlasting love. Whatever is burdening you, the Lord will walk through it with you through it won’t be easy, but He will provide for you every step.
He calls us, Come to Me, all who are weary and burdened, and I will give you rest.  Put My yoke upon your shoulders—it might appear heavy at first, but it is perfectly fitted to your curves. Learn from Me, for I am gentle and humble of heart. When you are yoked to Me, your weary souls will find rest.  For My yoke is easy, and My burden is light.” Matthew 11:28-30
He will give you rest and renew your soul. Pour out everything in prayer than allow Him to pour into you through His word, devotionals, other people, or simply by being in His precious presence.
Father,
We come to you emotionally spent and phsyically tired. Help us to unload our burdens to You in prayer. Renew our hearts. Fill us with Your comfort. Allow us to be yoked to you and to find our rest in you. Thank you for your love and for being our provider. Help us to grow closer to you each day. Amen

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.

Hospital Part 2

Part two more or less of my hospital stay. I apologize it is all over the place.

I had two strange nose bleeds. I have had more nose bleeds in my life than I can count but these were different. My second one happen 4 am. I got blood everywhere in my bathroom, it poured out uncontrollably. I am anemic currently so I feel that it is related.

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I had a repeat colonoscopy last Tuesday.  The picture above is my special drink. I usually do Miralax for colonoscopies. I found this solution to work quicker, be less painful, and taste somewhat better. I did get dizzy.  This one is called go lightly. I got the solution late in the day and was still nauseated so my nurse told me to drink as much as I could without making myself sick. I got more than half down.

I had been given my insomnia medication the night before the scope. I usually don’t take it at home and I had forgotten why until I had an emotional meltdown directly after the scope. I didn’t get much sleep the night before and woke up too soon after the scope. I wasn’t crying because my colon has healed somewhat. I was crying because I was scared of not being taken seriously and being taped in this abdominal flare up. I know the pain levels need to come down in order for me to function better. Apparently not everyone understands that humans have emotions. Someone had told my mom that I need a psychiatrist. I get extremely irritated when people dismiss me or downplay my pain and symptoms.

I believe that crying can be helpful in coping with an illness and life in general. Medication can also play into emotions. I have had people tell me I need a better attitude when I am doubling over in pain at the doctors office. No one smiles 24/7.

The IV fluids were my best friend. It makes a huge difference. I ran low-grade fevers off and on as well.

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I was discharged late on the 6th. I have only been home a few days, my body is still trying to adjust. Last night I wasn’t able to sleep. I started having IBS/IBD symptoms 4 am. Therefore, Saturday was  difficult. I had a lot of nausea. I couldn’t take any of my meds until 1 pm. The doctor had been talking about readmitting me, but I don’t feel that is necessary at this point.

I see a newish Gastro Friday. We are hopeful that she will be able to help. I am still randomly bruising and bleeding. I am able to eat some. Grateful for the small improvements. Thank you to everyone who prayed for me when I was in the hospital.

 

Christmas Blues

It is the most wonderful time of the year… or is it just another blue Christmas? Chronic illness and the holiday season can be conflicting. Yes, there is so much beauty as well as love in this season. However, it can also be a reminder of life B.C.I. (before chronic illness). The traditions we can no longer take part of, the foods we can no longer enjoy, and the friends who have left us.

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My love for Christmas has always been known. By October, I am ready to begin decorating and listening to Christmas music. Throughout the fall, the excitement builds with every step closer to the Holiday season. This is the first year I am not excited about this beautiful season. I find my lack of excitement frustrating. I don’t feel like me.

Of course, medication change has a role in this for me emotionally. The saga continues as I taper off of the lovely Prednisone. It has been a little over 20 days since my taper. My body is furious. I have begun passing kidney stones again, which landed me in urgent care. I have been put on a miserable antibiotic. Additionally, my IBD is flaring along with my lupus.  Not to mention that finals are right around the corner. I know logically why I feel the way I do, but logic doesn’t ease the frustration.

I know I am not the only person playing tug a war with emotions this Holiday season. It can be more difficult to cope will illness. I am attempting to fake it till I make it, going through the motions. Praying somewhere along the way the excitement will kick in and I will feel the spirit of Christmas once again. I have begun decorating my room though it is a struggle with POTS. I become dizzy as I raise my arms to hang up snowflakes. My cats are inspirationally excited about the Christmas season.

How do you combat Christmas blues?