The Struggle of Our Today

“We’ll tell you about our broken places of yesterday but don’t dare admit the limitations of our today.” Lysa Terkeurst.

Wow. These words are heavy, exposing the truth. It is easier to talk about the past. How we have overcome trials demonstrating our own persistence and strength. Of course, from time to time we will include God, most times as a hero who swept in and saved the day. Rescuing us from the storm.

But talking about today? Being transparent; honest? That is a different story. It takes guts. We like to appear to the world as having it all together. As if we can accomplish this insane to do list, save the world, and be home for supper. In reality, we are falling apart- most people are facing limitations daily, which could be illness, addiction, family disputes, or finances.

 

With a chronic illness, we act often. Taking on the role of a healthy and normal individual in order to blend in or make others happy. A friend asks how we are… and too often, we smile straight up telling a lie, “I’m doing great”…. Desperately we even debate which lies to tell our doctor. What is worth sharing? Will he or she believe me? Is it worth the frustration? It is challenging, to be honest, and the individual that God created us to be. Isolation closes in on us; as we swim in the sea of invisible illness.

 

Without a doubt, there is a time and a place for everything. God’s word echo’s this in Ecclesiastes 3:1, “There is a time for everything, and a season for every activity under the heavens.” At times taking on a role has its advantages, and at other times, it is downright damaging. There is also a time for raw honesty. “You weren’t designed to go through suffering alone. As times get tough — and they will — reach out and reach up. “You weren’t designed to go through suffering alone. As times get tough — and they will — reach out and reach up,” Rick Warren.  Putting yourself out there is scary. Sharing your heart is healthy. By sharing with others, you become an inspiration and encouragement to others. Struggling does not make you weak, it makes you human.

Additionally, we ask who can we be honest with. Lately, I seem to keep hearing the same message, we   were not meant to do life on our own. We were made for community, not isolation. But in all honesty, it easier to say than do. Falling into isolation becomes easy with an illness. Most times, it is not intentional. We flare up, battle fatigue, and lose many friends. Having someone we can confide in about the struggles of today is rare. There are people who hurt us, leave us, and betray our trust.

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I think it is hard, to be honest in this way because we don’t want to be negative or a burden to others. At the same time, it is important to do so. Not only is it healthy, but it allows others to support us and specifically pray with us then allows us the chance to offer the same to them. Being honest allows us to share with others how God is working in our lives right now.

 

Personally, I have two friends who I can be brutally gut level honest with, knowing in my heart that no matter what they will still love me and will pray with me. Their friendship is a beautiful treasure. I hope you have at least one person who you can be honest with about the struggles of today.

 

Lord,

 

You are the God who sees us and knows us completely. Teach us how to be honest about the struggles of today. Bless us with people who we can share our burdens with and support. Allow us to continually bring glory to Your Holy Name.

 

Amen

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Uncertainty in Fibromyalgia and Chronic Illness

Today we have a wonderful and eye opening post from Cassie Creley.

Cassie Creley lives in the Pacific Northwest and loves writing. Dealing with multiple health conditions including cancer, fibromyalgia, Dysautonomia, and asthma have taught her that God’s joy is available even in our worse struggles. She blogs about creativity, faith, and living with chronic illness at http://cassiecreley.com.

 

 

You would expect a diagnosis to bring some certainty to your life. But when the diagnosis you receive is for a chronic illness that is currently incurable, that is not often the case. It took me some time to realize this. At first, I was blindsided by the amount of uncertainty that took up residence in my life due to my health.

 

Being diagnosed with a chronic illness puts us in a constant state of uncertainty. This uncertainty is one of the unexpected and most difficult side effects I’ve been dealing with since being diagnosed with fibromyalgia. Before getting diagnosed, as my health declined, there was always the assumption in the back of my mind that things would get better, I would get well, and life would continue as normal. But the diagnoses have just kept coming in the last two years: thyroid cancer, Dysautonomia, CFIDS, in addition to the asthma and allergies I was diagnosed with early on in life.

 

Unless you’ve experienced fibromyalgia, Dysautonomia, or other chronic illnesses, it’s hard to imagine the daily impact. I find myself wishing someone had warned me, which is just the same as wishing there was no such thing as uncertainty!

 

My body and my mind have become sources of uncertainty. I’m normally a very organized and dependable person. I could be counted on to show up when I said I would, to have a project done by deadline. Now, I often have to cancel last minute because there’s no telling when my body will suddenly decide it’s done for the day. I also used to thrive on having a schedule and routine. My symptoms and lack of energy throw my entire day into chaos, making it nearly impossible to predict when I’ll be able to accomplish even simple tasks.

 

Perhaps most frustrating of all is the uncertainty I now experience when it comes to my mind. I used to easily memorize information, but now struggle to find words or put them in the right order when speaking. When proofreading my writing, I’ll often find that I’ve inexplicably typed the wrong word. This is all part of the infamous brain fog of fibromyalgia. It makes me uncomfortable when talking with even close friends, let alone people I don’t know well, and impacts my confidence as a writer and my self esteem in general.

 

In spite of all this (and maybe partially because of it) I’m a huge believer in silver linings. What, you might ask, could possibly be a silver lining to so much uncertainty?

 

Maybe, if we can harness our uncertainty, we can let it force us to realize that uncertainty is a natural part of life.

 

The world teaches us that we should have every step of our lives planned out. And part of me really likes that. I want to know all the details. I want to be prepared. But is this healthy?

 

This expectation starts young. I didn’t realize just how profound an impact it has until I was a high school leader at my church for a few years. Students were expected to know where they wanted to go to college and what career path they would follow well before they graduated. I could see how much pressure and stress this put on the students. And the expectations continue throughout life—people expect you to know who you’ll marry, how many kids you’ll have, what you’ll do every 5 years of your life, when you’ll retire, etc., etc. If you don’t have everything planned, people seem to think there is something wrong with you.

 

Huh. Kind of makes you realized that certainty, or at least the illusion of certainty, can be exhausting too. Probably because pretending we’re in control of everything isn’t the way God designed us to live. In fact, the book of James has some pretty harsh words about acting like we know everything:

 

“Now listen, you who say, ‘Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.’ Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. Instead, you ought to say, ‘If it is the Lord’s will, we will live and do this or that.’ As it is, you boast in your arrogant schemes. All such boasting is evil.” (James 4:13-16 NIV)

 

Pride creeps in (aka boasting) when we become focused on our will and our need to control every aspect of our lives. Instead, we’re called to recognize our dependence on God’s will and surrender our uncertainty to His sovereign will and trustworthy love.

 

Maybe our unique understanding of uncertainty, brought about by chronic illness, will allow us to extend grace to others because we won’t expect people to have everything figured out.

 

Maybe we can extend that same grace to ourselves. Wouldn’t that be a relief? To know we’re not expected to have everything together at all times?

 

I’m realizing that uncertainty is part of being human. If we take the time to recognize the normalcy of uncertainty, we can also recognize that our faith makes uncertainty okay.

 

We don’t have to be uncertain about God. We’re assured in the Bible of His unchanging nature. (Hebrews 13:8) We’re assured of his presence. (Matthew 28:20) We’re assured of his unchanging love: “Let the morning bring me word of your unfailing love, for I have put my trust in you. Show me the way I should go, for to you I entrust my life.” (Psalm 143:8 NIV)

 

The uncertainty of chronic illness starts to look smaller the more we focus on God’s certainty. I’m not saying it’s easy. But it’s possible. Some days will be harder than others. But the flip side of knowing some days will be harder is that we can rest assured that some days will be easier.

 

Once we stop running from uncertainty, we can embrace the fact that there is a positive side of not knowing everything. I’m reminded of a quote by Luci Swindoll, one of my favorites that I recently rediscovered: “Lord…may I relish the joy of knowing you are full of wonderful surprises.” Even in the midst of chronic illness or whatever life throws our way, let us never forget that God can certainly bring about beautiful things that are more than we ask or imagine.

 

Even in the midst of life’s uncertainty, let us never forget that God can certainly

bring about beautiful things!

Diagnosing Lupus

There wasn’t a defining moment or even chapter in my life pointing to when Lupus invaded my body.  The pain began at age six. I quickly learned how to fake well. Overall ignoring the pain. It was mentioned off and on through the years to my pediatrician. No one was persistent with any of my symptoms or complaints. My first severe flare up was at nine years old. I had back to back ‘viruses’ blamed for every intense symptom. I was put on homebound, unable to go to school. The older I got the sicker I got. The more intense the pain. The more symptoms appeared.

I longed for a diagnosis. For someone to take me seriously. I was told countless times I was too young to be in so much pain, too young for a chronic illness. The first rheumatologist I saw did no testing, yet placed me on a medication. At first, I was relieved and full of hope. That is until I began having an allergic reaction. The doctor insisted on increasing the medication. I began having psycho seizures and stopped taking the medication. I saw a few other rheumatologists. Everyone eagerly promises to get to the bottom of my case at the first appointment then quickly becomes discouraged telling me they are clueless or there is nothing wrong with me.

One day I was discussing my frustrations with my cousin. She asked me if I had been tested for Lupus. I had no clue what Lupus was, but I had not been tested for it. She advised I check out the Lupus Foundation of America. Which of course, I did that evening and I was in awe. This illness was a perfect fit. It described every wacky symptom I had. From that point forward I did research on Lupus and spoke with the foundation several times learning as much as possible.

My symptoms mirror a perfect textbook case. In the beginning of my case, I believe due to my age, my labs were not always positive. I have had some of the top doctors on my case all of who believe firmly I have Lupus, but the way my body functions is different from most people. I am not normal by any standards.  After a long battle, I got my diagnosis. As soon as I received it I asked for it in writing. I switched doctors due to going away to school then switched again due to getting to sick and coming home. I had a doctor take me off all my medication including Plaquenil. The doctor told me I just had Fibromyalgia. He sent me to a Fibro doctor claiming she was the best in the field and she would agree with him. Well, that backfired for him. She told me I was a Lupus patient and needed a better doctor. She quickly got me into the team of doctors I am with now.

I switched doctors due to going away to school then switched again due to getting to sick and coming home. I had a doctor take me off all my medication including Plaquenil. The doctor told me I just had Fibromyalgia. He sent me to a Fibro doctor claiming she was the best in the field and she would agree with him. Well, that backfired for him. She told me I was a Lupus patient and needed a better doctor. She quickly got me into the team of doctors I am with now. Though, we frequently become frustrated still with my case and have different options I love my team of doctors. Having good doctors is a true treasure. Knowing that they will listen, are trustworthy, and will try to help makes things slightly less stressful.

I came home a few weeks early from college my first semester with the plan of getting things under control and then going away again the following semester. I found out I had severe double pyelonephritis (kidney infection). It lasted a little over four months. My body has not been the same since the infection.

I thought knowing the name to the monster reeking havoc in my body would be my big break though, the end of my major struggles. I thought I would get my life back.

It is also a battle keeping a diagnosis. Medication makes labs look pretty than the doctor begins to overthink.It seems when blood tests are postive they are never positive enough. When additional test records something alarming it is brushed off to the side. It feels like a game. One I don’t want to play. My symptoms equal the classic Lupus textbook case, but my labs do not always reflect this.

Diagnosing any autoimmune disorder is a complex task. Even in the medical field, people are not educated enough about autoimmune diseases- especially when it comes to Lupus. This is one reason awareness months are vital. Not only do those who suffer with the illness get support and educated, but doctors have new chances to become educated as well as people not directly affected by this particular illness.

It’s Okay To Not Be Okay

Featuring an Ann Voskamp devotional video.

“Trust in him at all times, you people; pour out your hearts to him, for God is our refuge.” Psalm 62:8 

Worn. Drained. Over spent. Bone tired. Every waking second consumed with endless tasks. Sinking. Stressed. Drowning in appointments, work engagements,and family obligations. Battling your own body- perhaps your own mind too. Battle after battle back to back with no time to recover.

Not okay. It is okay to not be okay to be in dire need of rest in the Saviors arms. Take time off from the chaos to reconnect with the Source of Life. Pour out your heart to Him, sweet friend.

“It’s okay to not feel okay because you have One who made you His one. You have One who left the clamor of the ninety-nine, to find you, remind you, remake you, rename you, and release you. It’s okay to feel whatever you feel because you don’t judge your feelings; you feel your feelings—and then let your emotions — move your toward God. You may feel ready to just forget what you’ve done, but you have one is who more than ready to forgive you. You may feel ready to just give up — but you have one who is more than ready to give you Grace. You may feel like you aren’t enough — seen enough, liked enough, heard enough, wanted enough, loved enough — but you have One who is an even greater Lover, an even greater Advocate, an even greater Friend, an even greater Savior, than you have ever imagined Him to be even when your love for Him was most on fire. Whatever the story is today, it is abundantly okay. Because the Writer of The Story has written Himself into the hardest places of your story and He is with you and He is in you and He is for you and He will not leave you until your story is made into abundant and amazing and forever glory.”  Ann Voskamp

Lord,

I have neglected my time with You. I have become consumed with wordy things, things that are quickly fading. I am over burdened and over spent. I am drained from trying to take control over things, make things okay, and do it all. I try to appear like I have it all together which is so far from the truth. Oh Lord, I need You now more than ever! Give me rest. Renew my bone weary soul. Remind me of who I am in You. Remake me to reflect Your heart. Give me the courage to pour our my heart to You. Let every breath move me closer to You.

Thank You for all You have done for me. I praise You for knowing me fully and allowing me to pour my heart out to You. Thank you from the depths of my soul for Your grace. Thank You for loving me where I am and reminding me that I am enough. Thank You for writing my story and allowing it to bring honor and glory to Your Mighty Name.

Amen

 

How can you rest in the Saviors arms today?

Encouragement

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It is difficult when your illness dictates your life. When you are taped with no way out. Unable to live. Merely surviving one moment at a time. Hope seems light years away. Everything seems to crumble right before your eyes. Everyone has days when they break. It is okay to have break downs as long as you don’t give up. You have everything you need to overcome these struggles.

You are NOT alone. Others feel this way as well. It won’t be like this forever. Eventually you will be able to live life to the fullest again. We must hold on to this hope, for it gives us the strength to keep fighting. Keep your faith. Stay strong. Hold onto hope.  You have so much strength and courage. You accomplish amazing things on daily. Be proud of all you have overcome.

It’s a season for beauty and blessings. Your strong will provide strength and hope to countless people. There will be positive things that occur because of this difficult season in your life. God’s got this. Rest in his loving arms. Blessing are just around the corner. Be open too receive all the Lord has to offer. Gentle hugs spoonie warriors. Sending prayers and spoons.

Introducing my invisible companion – pain

A sweet member of Chronically Hopeful, Angela, is sharing a beautiful post with us today. Thank you from the bottom of my heart for taking the time and spoons to be here with us today.

Bio from Angela,

I am a christian and lay-preacher. I worked in finance for 25 years but I am currently unemployed and looking for a new opportunity when my pain is managed effectively. I enjoy writing, public speaking, mentoring young people and spending time with family and friends.IMG-20170818-WA0004

 

When you meet someone for the first time, what do you think that they see or observe about you? Maybe the color of your eyes? Your radiant smile? Your height? Weight? Or whether or not you wear spectacles, walk with a cane or use a wheel chair? It is possible that a person may see and notice all of these outward features but for me, there is one thing that whilst all-encompassing to me, it is something that no one sees. I consider that it is significant but it is also invisible (at least to the untrained eye), and that is my pain!

Pain, caused initially by an injury and then by disease. Pain that wakes me up and often prevents me from sleeping. Pain that dictates my activities or lack of them. Pain that varies, but is my closest companion. I have never asked for its presence, but daily I am forced to contend with this intrusion, this reality, something that cannot be explained and that has a devastating effect on the quality of my life.

 

My “relationship” with pain, for want of a better word, began in the autumn of 1989 following a serious road traffic accident. For about six months I was unable to leave the house alone and needed help with every aspect of my life. Over the months that followed, my father and the physiotherapy team at my local hospital helped me to recover my strength thereby allowing me to return to work.

It was my dream to return to the relatively pain free life with the energy and freedom that many of my peers in their mid 20’s enjoyed. Sadly this was not to be and I had to find and accept a new and unwanted reality. Even though I was a Christian, this was still a challenge.

I was truly grateful for life, after all, how many people do you know that have been knocked over by a fire engine on call and have lived to share their testimony? I knew that I was blessed, but somehow at the back of my mind, there were some nagging questions: Why did this happen to me? Did I do something wrong? Suppose I had taken another route home or left work on time would things have been different?

 

As I battled with questions that I could not answer, I had further complications as I encountered a modern-day equivalent of Job’s comforters. People came to pray, give thanks, and to comfort me but sadly a few came to discover what “secret sins” I had committed that had led to this terrible accident.

Over the next few years as I grappled with the effects of widespread chronic pain, I found myself dealing with people who demonstrated a lack of understanding about chronic conditions and whether or not my pain was real or imagined. I asked God for healing, friends and family came for special prayer sessions, but when healing did not come, my faith was questioned.

 

What do you do when the promises of God don’t seem to apply to you or when you look around and hear stories of miraculous healings? When people question your desire to be healed, to be whole, to once again contribute to your church, your community, your family or even take care of yourself?

 

I didn’t have the answers or the strength to cope with them alongside the fatigue, nerve pain and all the challenges that both fibromyalgia and complex regional pain syndrome, brought to my life.

 

Moving forward however, I try to encourage myself and others by what God shows me through His Word. No matter how hard it is, I still have HOPE! Why? Well after nearly 20 years in chronic pain, I had another life-changing accident, one that left me unable to work and crippled by excruciating pain. Yet in all of this time I have been able to eat, have a roof over my head and I have my basic needs met. Has it been easy? Absolutely not! I lost some things that were important to me but I held on to that all-important, life-saving ingredient, Hope! Here’s how the Apostle Paul describes it in Romans 5: 3-5 ESV:

“3 Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.”

Hope as described here keeps us from being disappointed. Life is difficult for those who are suffering, but believing that a better day is coming, gives us hope. The Apostle Paul also has a disability, we are not told exactly what it is, but we know that he prayed three times for it to be removed.  When God chose not to, Paul accepted that God’s strength would be revealed in Paul’s weakness:

2 Corinthians 9: 7-10 Message

7-10 “Because of the extravagance of those revelations, and so I wouldn’t get a big head, I was given the gift of a handicap to keep me in constant touch with my limitations. Satan’s angel did his best to get me down; what he in fact did was push me to my knees. No danger then of walking around high and mighty! At first I didn’t think of it as a gift, and begged God to remove it. Three times I did that, and then he told me, my grace is enough; it’s all you need.
My strength comes into its own in your weakness. Once I heard that, I was glad to let it happen. I quit focusing on the handicap and began appreciating the gift. It was a case of Christ’s strength moving in on my weakness. Now I take limitations in stride, and with good cheer, these limitations that cut me down to size—abuse, accidents, opposition, bad breaks. I just let Christ take over! And so the weaker I get, the stronger I become.”

 

When I feel weak I go to God to receive strength from Him so that I am able to continue with the life that God has given me. I have lived with chronic pain for 28 years now and some days I am unhappy about the pain that I feel, that no one appears to understand and that no one sees. When my invisible companion tries to control my life, I try to reflect on better days and lift my heart to God who gives me hope.

Migraine 101

 

 

The word migraine is a familiar one to most yet there is a lot of confusion surrounding them. Migraines are anything but straightforward. In fact, many medical professionals debate over the definition, cause, and treatment.

The basic foundation of the definition of a migraine according to Webster dictionary is a condition marked by recurring moderate to severe headache with throbbing pain that usually lasts from four hours to three days, typically begins on one side of the head but may spread to both sides, is often accompanied by a variety of symptoms. Some people believe that it is a genetic neurological disease.

Of course, there can be other causes in addition to genetics such as stress, trauma, or chronic illness. Many times the cause of a migraine disorder is unknown.

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There are a total of four stages of a migraine, but not everyone encounters each stage which is prodrome, aura, headache, and post-drome. First, prodrome occurs one or two days before a migraine. Many people do not experience aura which is nervous system symptoms before or during a migraine. The stage headache also is known as the attack is an actual migraine which can last anywhere from 4 hours to 72 hours if untreated according to Mayo Clinic. Lastly, post-drome occurs afterward for around 24 hours.

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Being able to recognize the signs of a migraine are essential. A migraine can be accompanied by an array of symptoms.

Some symptoms include

  • extreme pain,
  • light smell or sound sensitivity
  • nausea
  • vomiting
  • pain on one side
  • pain down the neck
  • vision changes
  • numbness
  • Vertigo
  • Feeling lightheaded or dizzy
  • Puffy eyelid
  • Difficulty concentrating
  • Fatigue
  • Diarrhea – constipation
  • Mood changes
  • Food cravings
  • Hives
  • Fever

Symptoms of a migraine are vastly different for every person. Furthermore, symptoms may vary different episodes. Likewise, triggers are unique to everyone.

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Some triggers include but are not limited to

  • Stress
  • Hormonal Changes
  • Weather
  • Foods such as aged cheeses, salty foods and processed foods
  • Skipping Meals
  • Dehydration
  • Lack of Sleep
  • Additives in foods like MSG
  • Drinks like alcohol or caffeine
  • Sensory stimuli. Bright lights and sun glare can induce migraines, as can loud sounds. Strong smells — including perfume, or paint thinner

 

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The majority of the time migraines are diagnosed on a clinical exam and from discussing episodes with a physician. Additionally, they will consider medical history, symptoms, and perform a neurological examination. Other medical tests may be ordered to rule out another illness or if the pain seems unreasonably severe or is unusual.