Mandy suffers from several Chronic Pain Disorders. She shares here about her own journey with pain but also allows others to share their journey as well. This isn’t just for chronic pain warriors. Read along to understand the plight of so many others that struggle with pain.
“I am the vine; you are the branches. If you remain in me and I in you, you will bear much fruit; apart from me you can do nothing.”
I’ve never been able to stay STILL. I can’t even watch a 30 minute TV sitcom without getting up and moving around. I have to either be crocheting or have something to do with my hands. Otherwise, I’m up at every commercial whether I have something to do or not. My son inherited the same thing from me. He is always going and going. As a baby, my husband had to literally hold him tight in his arms to get him to go sleep at night.
God had to do the same with me.
He had to take me in his arms and hold me tight. I was doing so many things. To name a few …
not only was I a pastor’s wife,
homeschooling my daughter,
Children’s Ministry Director,
leading classes at the home school group,
Office Manager at the church,
and who knows what else.
Until one day in September, I was Suddenly Still
God said “Be STILL” one last time and I could do nothing else but be STILL.
It was a normal Sunday. I had been dealing with Dis-embarquement Syndrome from a cruise earlier in the year; so, that afternoon I decided to lie down and rest before evening services. As I went to lie down, I had a sharp pain in my back, I couldn’t finish lying down, nor could I raise myself to upright. My husband had to help me into the bed. If I moved the least bit, I had excruciating, contracting pains in my back. Long story short, I spent the next month or two laying on my back in the bed-Suddenly Still. It took a year and one half of doctors visits trying to find out what the problem was.
During those days of STILLNESS
God stripped all the things away that were getting my attention instead of Him. The church office, the children’s department, the home school group. Thankfully, my daughter was self-directed enough to keep her schooling on track. She also amazingly picked up the housekeeping and cooking. While I lay there, STILL, God was finally able to begin to speak to me. That’s when I began to actually spend time in the Word. Over the next three years, I read the Bible through in three different versions. God has allowed me to get back on my feet, but not back to doing all the things I wanted to do. I’m not sure that He will because when we discuss it, He asks me …
So this pain is my “thorn in the flesh” to remind me about what is most important. The message I tell people the most now is,
Don’t let this happen to you.
Put God first and everything else will fall into place. (Matt 6:33)
These years have brought me so close to God. I’ve realized how far I was from Him and how much I was doing things in my own strength. And how much I had been missing.
If you have been “SUDDENLY STILL” from your “responsibilities”, I wonder if it is not God calling you to come, get STILL, and fellowship with Him.
We were finally taking a cruise with friends. They had been begging us for years to go to the Bahamas with them. We were all set to go the previous year until my father had a heart attack just weeks before the embarquement.
So we waited another year. And finally, we embarked on the ship. The first few days were wonderful. I wasn’t even experiencing expected nausea from seasickness.
We arrived on the cruise island for a fun day of bottomless boat rides, parasailing, and a huge BBQ picnic. What fun it was. But it was to be my last good day for a long, long time.
Embarking the Tender
A tender is a small boat that carries you to and from the port of call, or island stop. On this particular day, we need to take the tender to get to the scheduled shore excursion. The trip to the island was fine. However, returning was not so great.
We took the very last boat to the ship. So did “everyone” else. We were packed on there like sardines. This would not have been so bad except There was a backup of tenders taking people to the ship. We sat on the water bouncing about for nearly an hour amidst a lot of diesel fuel fumes. I was already a bit nauseous from that bottomless boat, but this “little” trip did me in. I pushed my way to the edge of the boat just in time to lose my lunch over the side.
Things did not improve on the ship. We dressed for our Valentine’s Dinner but my stomach just wouldn’t settle down. I remained sick for the entire return home to Jacksonville.
I was never so happy to set foot on land. But my body decided. Nah! I’ll just keep bouncing around for a while. It’s what they call Disembarkment Syndrome. I had a feeling of bouncing about in that little tender boat for the next 6 months.
Stillness is hard, especially when you are hurting or scared or worried. Whenever I hear this Bible verse I am reminded of working in the strawberry fields.
When I was in college, I worked at a strawberry patch every summer. Now, this was not just a little patch of strawberries in our backyard. This was acres of strawberries. I worked through the season. So I was cleaning fields to keep out weeds and ready them for the public to come and pick strawberries. Now when strawberries are blooming, guess what else might be around. You guessed it, bees.
One day, I was working the fields when suddenly I found myself working in the same place as the bees. And I was surrounded. Why couldn’t this be one of those times when you find yourself frozen and cannot move?
No … My mind was saying “BE STILL… BE STILL and they won’t bother you. Just go about your own business. Keep pulling weeds.” But my body was flailing, my feet were doing some kind of new dance. My arms and hands were waving and swatting the air. And no matter how much I tried to stop, I could not convince my body that I needed to just stop and quit moving. (My brothers had a good laugh imagining this when I relayed the story to them.) Somehow, I finally did find a way to still myselfwithout getting stung.
Here’s the point.
The bees need to be there to pollinate those strawberries. We wouldn’t get those sweet, delicious strawberries without the bees.
It’s that way in life.
Those trials are there to help us grow. You’ve heard it before … “ the testing of your faith produces endurance, etc., etc” But, we don’t like it one little bit. We want the trial to go away, but God needs us to STOP AND LISTEN. He is CALLING to us, but too often, we don’t hear him because we are too busy doing good things and then too busy swatting at the problems.
But He is quietly saying “BE STILL. BE STILL.” Some of us never learn to BE STILL until God forces us to BE STILL.
Coming up next, I’ll share how God made me STILL.
Meanwhile, share in the comments, “What does it take for you to BE STILL?”
Want to know about my journey with pain? Check back HERE for new posts on my story.
I lost supporting other homeschoolers and teaching classes,
No freedom as I could no longer drive myself where I wanted to go,
I lost my social life,
However, I gained a new perspective on life.
I gained an empathy for others who are ill…sicker than myself.
I gained an understanding of the concerns and pressures placed on a caregiver. None by their own choosing (other than the promise given in the wedding vows, or that blood is thicker the water).
and ultimately, my husband lost his job due to my illness. Which meant we lost our home, our income, our self-worth.
We gained a new trust in God as our provider (no relying on our own abilities here.)
The greatest thing I gained in the stillness, was time to really get close to my Creator. I now gave Him time to really speak to me and, oh, how I have grown.
Illness can teach us what is really important in life.
We can get so busy doing stuff.
Stuff that doesn’t matter worth a flip.
Stuff that will only burn up when we stand before God one day.
Why don’t we listen
when we read or hear God’s Word?
He says …
Jesus: If any one of you wants to follow Me, you will have to give yourself up to God’s plan, take up your cross, and do as I do. 35 For any one of you who wants to be rescued will lose your life, but any one of you who loses your life for My sake and for the sake of this good news will be liberated.
36 Really, what profit is there for you to gain the whole world and lose yourself in the process?
37 What can you give in exchange for your life?
38 If you are ashamed of Me and of what I came to teach to this adulterous and sinful generation, then the Son of Man will be ashamed of you when He comes in the glory of His Father along with the holy messengers at the final judgment.
I’ve heard that we can re-train our minds and deter some of our pain. This year, I would like to instill some “feel-good” scriptures in your minds to help fight against the drudgery of our invisible pain. I have asked fellow pain warriors to write a quick note of encouragement using scripture that helps them get through the pain. Here is the first one by my dear friend, Bettie Gilbert who has shared here on the blog before.
Dear Family and Friends,
Thank you for being so concerned for my health, and for asking how I am getting along.
Recently I was reminded of a Scripture Verse that confirmed what both my Physical Therapist and my Counselor had shared with me:
Did you know that the same areas of your brain that were triggered during a pleasant experience years ago, will be triggered again just by remembering it?
My counselor offered a beneficial practice for me then, on days when I am feeling low or depressed. She said that if I would look back and try to remember better days, and to even try to think about the specific details of a good experience, then those same areas in my brain would be triggered with “feel-good” chemicals now.
My physical therapist went a step further and said that studies have found a real benefit in pain therapy when a patient can remember a time of exertion, such as walking or working out, and slowly pace out the memory as if they are “walking” again in their mind. The right-left sensations trigger those same areas in your brain to produce those “feel-good” chemicals, and even can stimulate pain relief in some patients.
Walk the Halls of Memory
So, on days when you see me feeling particularly low about the days gone by and all that I cannot accomplish now, maybe we could join in a session of “therapy” and walk the halls of our memories together. Who knows, maybe your own “feel-good” chemicals might be given a boost as you share those pleasant memories also.
Isn’t the working of our human body and brain incredible?
Truly we are “fearfully and wonderfully made” as the Psalmist tells us:
“I will give thanks and praise to You, for I am fearfully and wonderfully made; Wonderful are Your works, and my soul knows it very well.”
I am praying for you my dear loved one, as you have reached out to me. May you feel so blessed by God as He pours His compassion through you.
Your loved one in Christ,
Thank you Bettie for reminding us of these feel-good scriptures. We can always depend on you to come through with great encouragements.
IT’S YOUR TURN!
Share an encouraging post on your feel-good scripture. It can be about getting through whatever you deal with… not just pain like Bettie and I..
It’s been a while since I shared my journey with fibro and RA pain. A new friend and fellow pain warrior asked if I would do an interview on her blog, so that gave me the chance to update my story.
When did you notice that something was wrong, at what age do you think the first symptoms appeared?
My first symptom was severe chest pains at the age of 11 or 12. Of course, after chest x-rays and such, nothing was found to be a problem, so it was diagnosed as “growing pains”. I had these pains all through high school. In retrospect, the more I learn about fibromyalgia the more I see that I have probably suffered all my life. Fatigue has always been an issue for me.
Normally it takes a few years to get the diagnosis. What was it like for you?
No other research was done until after we returned from a cruise in February 2011 (49 years old). I acquired dis-embarkment syndrome which is when a person never gets their land legs back after leaving the ship. I still have a feeling of bouncing in a boat (10 years later). Months went by as doctors tested me for the problem.
In August 2011,
I had an episode of shortness of breath. No diagnosis was found. Then I awoke one morning with a crick in my neck. I went to a chiropractor who tried to give me an adjustment. My neck would not move at first but when it finally did, it shot pain down my neck and body.
My journey with pain really began one Sunday in September; I laid down to rest but only lay about halfway down when pain shot across my lower back. The slightest movement would cause excruciating, contracting pains across my back. I was confined to my bed for about a month. No medications except large amounts of prednisone were helpful.
After visiting several doctors, I ended up with a blood clot in my left leg because I had been immobile for too long. Visiting these doctors entailed being carried out of my house in a wheelchair by four men. After recovering from the blood clot, my doctors decided to send me to Mayo Clinic. (Happy 50th birthday!) The doctor sent me home and said wait for Mayo Clinic to call.
Mayo Clinic called me within a month just to get my information and give me instructions for setting up an account. They said that it would probably be 6 months to get an appointment. I thought, “No way I can have this kind of pain for six months”, so I asked to go to Emory University. We went to the spine center at Emory but they found nothing wrong. Fortunately, after a month or so, Mayo Clinic called and had an opening.
The first appointment at Mayo was with one doctor. I brought him all my records and shared my entire story. We returned 2 months later for 3 days of testing and seeing several specialists.
I went home with a diagnosis of Central Sensitivity Syndrome with indications of Fibromyalgia, Myofascial Pain Syndrome, and Chronic Pain Syndrome. What a mouthful! That was sometime in March 2012 – a year and one month after our cruise. When I talk with other fibro patients, I feel that I was fortunate. I am thankful that I was so quickly sent on to Mayo Clinic. It is quite an amazing medical center. I wrote a post about Mayo Clinic.
After a few months of medications for the fibromyalgia, I was able to begin to reduce the steroids. At this point, my knees began to swell and have a lot of pain. So I was sent to an orthopedic specialist. He diagnosed a torn meniscus and arthritis.
Knee Surgery. Repaired the meniscus and cleaned out some arthritis. But things were not looking good in my knee. He wanted a second opinion. So we were scheduled to return to Mayo Clinic. Once you are a patient, It doesn’t take as long to get an appointment.
Returned to my rheumatologist. He agreed that it was likely just osteoarthritis. But he decided to schedule all the blood work again. It turned out that I have Rheumatoid Arthritis. I wrote about the difference between osteoarthritis and rheumatoid arthritis here. The RA was caught early. The doctor said that I was fortunate and would probably not have the disfiguring that most have.
The year of COVID-19 has me way behind in 2021. We didn’t celebrate Christmas until mid-January so it’s no wonder that I am just now getting my schedule and plans in order. Is this true for you?
Finding God’s Plan
Finding God’s path has been challenging to say the least. I am baffled how someone with Chronic Illness can struggle even more with being “shut-in”. How is it that my days seem full when I don’t really have that much to do?
Well, being Type-A, I am always wanting to get more done than is physically possible. Those BIG planners only make me have lofty ideas. This planner keeps me from pushing myself too much. I just list my to do’s for the week. (only one per day, max) I’m not nearly as frustrated about what I manage to complete.
I have found a lot of beautiful planners. But seriously, they are bulky and way too complicated for the chronic gal. I need simple but pretty. I don’t need stickers or all the minute details; just a place to record doctor’s appointments and a checklist for the things I need to do this week.
THIS PLANNER WORKS FOR ME
Crystal Stine has come up with the perfect planner for me. It’s pretty with its faux leather cover. It’s lightweight, like a paperback. And simplistic. It offers monthly calendars at the beginning, Then 52 weekly calendars with encouraging quotes to cheer you along the way. And the nice thing is it’s NOT already dated. Start using it anytime and even go into a new year.
Perfect for teachers or homeschoolers or anyone who has a different fiscal year. In the back you will find a year layout where you can put things for the new year or maybe things like birthdays!
I’ve been struggling with chronic pain for nearly 10 years. Finding purpose is key to having a fulfilled life in the midst of pain.
One of the good things about that is connecting with so many wonderful chronic pain warriors. We have such a wonderful support community online.
One of those places is the Diamonds Conference where I met Paula Short. She recognized my blog and knew she had read some of my posts in the past. Now she knew where to find me! So she jumped right over to the blog and signed up for the newsletter. I have asked her to share a bit about her life with chronic pain and how she found new purpose.
1. Share the short story of your chronic pain journey. What is your diagnosis? Share some about the journey to this diagnosis.
Paula: I distinctly remember sitting on my mom’s bed crying because my legs hurt. That was at age 9. I could never go outside and play long because I had to come in and lay down because of the pain in my legs. My parents took me to the doctor and were told it was growing pains, my parents were told then that I had anxiety. Well, the pain never stopped, it stayed with me as I aged. Then in my teen years, my pain was spreading to other areas of my body. I began getting headaches at around age 4 and having chronic diarrhea since childhood. Of course, the doctors did not say it was IBS but just a nervous stomach. I still have belly pain and IBS today, even though I take medication for it.
I spent my 20’s going from doctor to doctor each area of illness required me to see different doctors. Finally, I was diagnosed with migraines, IBS, TMJ, and at the time MS. Fast forward to my 40’s. I was then diagnosed with degenerative disc disease, degenerative joints disease, and chronic pain. Finally, in 2016 MS was ruled out as a misdiagnosis, and then I got the fibromyalgia diagnosis. I also got my diagnosis of Complicated migraines while some people get auras, I get stroke symptoms. I am told it is a rare type of migraine. It was in 2016 that I had to retire, early at the age of 45.
I was devastated to have to leave my beloved Social Work. I felt like I lost my purpose. The constant pain and daily migraines (that cause me cognitive issues) had taken over. In addition to being in pain all the time. I am always in some state of migraine; my baseline pain level is 3 during the days but can rise to an 8. Balance and mobility issues, as well as, the dreaded fatigue and fog have been an issue, causing me to be labeled a fall risk.
So Much Chronic Pain
I don’t remember what it feels like to have no pain. I can’t forget to add in I see a psychiatrist for severe anxiety, depression, and panic attacks. After three years of therapy, I phased out of counseling in August of 2019.
Grieving and then on to acceptance. I continue with medication management now. Everything seems to get worse as I age. I take a lot of medication and prednisone is my friend.
2. Throughout this time, how was your faith walk impacted? Did you lose faith? Get Stronger?
PAULA: While I had grown up in a Christian home and followed Jesus all my life. Looking back, I see that I was a lukewarm Christian for a lot of my adult life. It was during my 30’s that my faith began to grow. It wasn’t until my 40’s that my faith began to develop into a relationship with God. I found and still do that during my worst times it leads me to draw nearer to God. It was during self-isolation and not wanting to go out of my house that I suddenly had an awakening if you will, I had to surrender not only my illnesses but my life to him. I said,
I am a work in progress
3. Was there a specific event that became a turning point in your faith during this journey?
PAULA: No. I really can’t pinpoint a specific event that was a turning point along my way. The best way I can describe it is since it has been a long journey, I continue to be a work in progress. If anything, this journey had led me to have a relationship with Christ. Emphasis on “relationship“.
4. What scripture has become a comfort for you in this journey? Why?
PAULA: “But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness. Therefore, I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.” 2 Corinthians 12:9 (NIV).
Although Jesus has not removed my physical condition his power is displayed in my weakness. It reminds me to trust and rely on God instead of myself, admitting my weakness affirms God’s strength.
Another Scripture that I rest in is Isaiah 40:31, NIV. It gives me hope and reminds me that his promise of strength will help me rise above life’s distractions and difficulties.
5. How do you find comfort on especially painful days?
PAULA: I remember that God is omnipresent, He is always with me day and night throughout my journey of this thing called life and illness. It brings me great comfort in knowing that. Also, I love listening to Christian music such as K-Love radio. It leads me to sing praises and worship him despite the pain. And thankfully, I am uplifted.
I love to read and prefer reading over TV, and I get creative by Bible faith bullet journaling.
I also find great comfort in my friend that Jesus blessed me with to journey with me, my ESA dog’s a little beagle named Little.
6. What are some things that your family and friends do that bring comfort in your pain?
PAULA: Well, that depends. My family and friends have not read about my chronic illness to educate themselves on how my fibromyalgia can affect my body and cognition. When I try to tell them how it affects me, sometimes, they listen and sometimes they dismiss or marginalize me.
They do, however, know how my complicated migraines affect me and are receptive towards me through those. Someone always goes with me to my neurologist appointments, so they hear what the doctor has to say. They are accommodating and compassionate when my migraines escalate.
7. Are you involved in any ministries or community service to reach out to others with chronic pain? Share about this.
PAULA: First, I need to tell you how God gave me my purpose back. If you recall above, I said I felt like I lost my purpose when I had to retire early from my beloved Social Work. I had been thinking of blogging for a long time, my heart was, and is convicted, in sharing more Jesus.
I kept feeling a tugging. Like God was calling me for something. But at the time I couldn’t recognize for what. Then when I did, I resisted saying “But God I’m not a writer.” Well, he had plans for me, and here I am writing hence Simply Chasing Jesus was born in November of 2019.
My new purpose was sharing him. Then I began to feel that tug again, still to blog. This time Simply Coffee and Jesus were born in September of 2020. This is where I began to hone in and write more specifically on chronic illness among other new topics for me. I never considered my blogs my ministry, but pausing and reflecting on it, it really is my ministry to help others and share Jesus’ good news.
8. Offer some words of encouragement to those who may be searching for purpose in their own chronic pain journey.
Dear friends, living with any chronic illness is rough. I know there are days when you are wondering how you’re going to make it through. I know there are days when you simply can’t function. I get it. Whether you are newly diagnosed with a chronic illness or have been a long-time warrior, educate yourself.
Try your best to educate friends and family. Some may not understand nor want to understand and that’s okay too. There are many great websites out there about living with chronic pain and illnesses. It was just recently that I was able to connect with other Christian bloggers who have and write about chronic pain and illnesses. So, you see, it may have taken me a while to find fellowship and community with others who understand but I finally did.
Friend, there are others out there, we are out there for you. We support you; we care. You are not your chronic illness you are not your chronic pain. God chose you and called you by name. Keep digging deep into God’s word. All Scripture is God-breathed from beginning to end. The answers, comfort, and hope are there in Him. The Psalms are filled with every emotion and lament you may have. God breathed hope from beginning to end. Dearest friends pray to him with honest abandon.
God’s got this!
God’s got you.
Thank you, Paula for this encouraging interview. Though I don’t have as many diagnosis, I could relate to so much of your journey. Especially the “I can’t write”. But God has a great sense of humor doesn’t he?
This post was prompted by the gang at Five Minute Friday Each Friday we take five minutes to write on the same prompt. It’s a lot of fun to see what others are inspired to write from the same prompt. Give it a try or click and do a bit of fun reading.
Music is my life.
There was a day when you would always find me singing. But lately, I find it hard to sing. It’s like there is a lump in my throat. And I feel kind of sad. So what’s a girl to do?
Always a Reason to Sing
2 Corinthians reminds me that our Christian life is not about being happy but about serving Christ. We are indeed jars of clay, cracked and broken but shining out the love of Christ. It’s those cracks and breaks that show the world we are His and that life can be fulfilling even in the valleys.
We are not promised a good life. We are not promised a bed of roses. Though if we were, I remind you the roses have thorns.
These scriptures remind us that even when we feel we cannot sing, we should look back at what God as done for us. If nothing else, He has saved us from our sin and promised us life eternal! This should be enough to give us His joy.
I’m reminded of the beautiful hymn, His Eye is on the Sparrow.
Why should I feel discouraged, Why should the shadows come, Why should my heart be lonely, And long for heaven, heaven and home, When, when Jesus is my portion, My constant Friend is He; Oh, oh-oh, his eye is on the sparrow, And I know He watched, watched it over me.
I sing because I’m happy (happy) I sing because I’m free (free free free) For His eye, his eye is on the sparrow, And I know, I know He watches over me.
He is my Constant Friend
God is watching over us. He cares about every detail of our lives. God sees us as His treasured possession! We can sing in this reality.
So don’t give up. Keep Singing.
Keep your eyes looking up. Be faithful to Him.
Allow His light to shine through you so that when you arrive at heaven’s gates, you will be bringing along a whole host of believers that found Christ because of your perseverance.
Sing to the Lord!
[ctt template=”4″ link=”513Nr” via=”yes” nofollow=”yes”]even when we feel we cannot sing, we should look back at what God as done for us. [/ctt]
This site uses functional cookies and external scripts to improve your experience.