Sharing: Fear of the Flare

#Poetry, Chronic Illness, Chronic Joy, Uncategorized

The beginning of the fear 

A shiver of fear ran down my spine as I heard the diagnosis from my rheumatologist a decade ago: “There is no cure for rheumatoid arthritis, only management.” Then he gave his prescription for the usual course of treatment, along with an extra medicine (prednisone) to be used for a flare.

I left his office with very little information. What I did have was an inner fight that had risen in response to what the doctor had told me. Whatever it took, I would conquer this disease and the fear that accompanied it.

What is a flare? 

Why would the rheumatologist talk about treating the disease and then mention this other word (flare) as if it were a separate illness? How would I know when to take that extra medication?

I found a wide range of definitions for a flare. The Arthritis Foundation website states plainly: “When it comes to defining flares, doctors and patients often don’t agree, and even individual patients have differing definitions.” 

My rheumatologist eventually explained his definition of a flare as unbearable pain, locking joints in immobility. I certainly had experienced that a few times and didn’t want it to happen again. I would take the medicines, change my lifestyle, and do anything necessary to avoid that kind of pain.

Avoidance was not possible. 

However, I soon found out that I simply could not avoid having a flare. My body was not able to accept the medications usually prescribed for rheumatoid arthritis. The flares frequently returned, causing flowing tears and cries for mercy.

After many medication failures and many visits with this doctor (who left me feeling ashamed that my disease was not under control), I felt the Lord’s grace to seek a new rheumatologist. When we moved, a rheumatologist change was again necessary—then yet another change because of insurance requirements.

Multiple definitions deepen the flare. 

Each new doctor defined flare differently. One suggested that I was having flares from the other diseases I carried (fibromyalgia, Sjogren’s syndrome, occipital neuralgia), each one causing the others to be worse. I had not realized that other diseases could also have flares. This deeper understanding now seeded a deeper fear in me.

Another rheumatologist explained that there was no hard and fast rule, but he defined a flare as a period of heightened disease activity with extremely heavy symptoms in multiple areas. Both he and the next rheumatologist gave me the freedom to pace out the prednisone bursts myself, as I seemed to be managing quite well.

I knew I was not managing anything. It was only God’s grace that helped me pace out the extra prednisone when all the other medications failed.

Grace lifted fear into worship. 

I thought I had learned to wait upon God and listen for His prompting to care for my body. However, one morning, in severe pain, I realized I was facing every day with fear, waiting for the next flare. 

  • Would this pain last all day? 
  • What if the flare increased, and it was too soon to take the prednisone burst? 
  • What if the flares returned and never left?

As I lifted my cries for mercy before Him, I felt something shift in my heart. I still woke with pain that kept me hobbling and stiff, but I felt His presence confronting my fear. He called me to enter into worshipping Him right there: 

  • Worship Him because the pain is not my master. 
  • Worship Him because the trial is proving His strength within me. 
  • Worship Him because I know it is not about me but all about Him!

From this worship, a poem expressing the honest lament that He called forth was birthed. I would love to have you join me over at Chronic Joy for the rest of this post.

Click here to read and listen to the poem and the remainder of the words.

The thoughts for this post were birthed last fall in the middle of what turned out to be the worst flare I had ever experienced. Only God knew how much I would need the comfort of those words and the Scriptures He gave me.

Perhaps you are facing a fiery trial? My daughter sent me a song this morning, on the day this post went live. Only God’s timing could match all these things together. He grants us another day to praise Him in the fire, to rejoice over His great amazing grace!

I pray the song blesses you as much as it blessed me:

“One More Day” Sons of Sunday

In this you greatly rejoice, even though now for a little while, if necessary, you have been distressed by various trials, so that the proof of your faith, being more precious than gold which perishes though tested by fire, may be found to result in praise, glory, and honor at the revelation of Jesus Christ; (1Peter 1:6-7)

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Published by Bettie G

Jesus follower, Wife, Mom, and Grandma, journeying through chronic illness one day at a time

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24 thoughts on “Sharing: Fear of the Flare”

  3. Thank you for sharing your journey here Bettie, I can relate to much of what is shared here in the area of facing flares & a lack of information from doctors.

    Although I don’t have RA, I do have FM & Sjogren’s syndrome in common with you plus a host of other autoimmune conditions.

    But the main thing I share with you is the love, strength & comfort of our Heavenly Father in His kindness & faithfulness in this season of Chronic illness in our lives. And for His love I am truly grateful.
    Blessings to you sweet friend,
    Jennifer

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    1. Dear Jennifer, I am so sorry you face these flares also, but I am grateful that you understand! It really does mean so much to have someone who sees and hears what you are saying!

      But I so agree with you that even more important is the comfort and kindness and faithfulness of our Lord. He sees every hidden part that no one else can see. And He never leaves us. Blessings love and hugs to you my dear friend across the ocean! ❤️

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  7. I am always blessed to read of your journey, Bettie. You encourage me to remember the blessing of how Jesus picks us up so tenderly and carries us through. I LOVE your poem. I had what they diagnosed as juvenile RA with red and swollen joints when I was in 10th grade and it was very painful. After God brought me through it, the achiness in my joints have ebbed and flowed at times, but I’m so thankful it hasn’t returned like that year. With my chronic lung disease, I get what the docs call “flare-ups”. My bronchial tubes get more inflamed and tighten up more. It especially happens if I get out of my slow routine and get too worn out or if I run into smoke, etc. Then my brain fogs up and it’s so hard to even think. I can only cry out, “Help me, Jesus!” Sometimes I need a round of Prednisone. Sometimes antibiotics, too. I don’t know why I’m sharing all this, but I always feel in my heart you understand. Thank you for all your support. Thanks be to God for His never-ending faithfulness, grace, and compassion to get us through chronic illnesses. May God bless you, my friend, with His tender, loving strength each moment!

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    1. Oh Trudy, I have always felt like you understood me so well also. But I did not realize that you had been diagnosed with JRA, besides your chronic lung disease. You really have been thru so much, that many people just can’t understand. But I’m so thankful that our Lord is always so near to us even if others are not. It is so amazing the way that He pulls us through and carries us in the hardest of places. I do feel like that is a miracle! Thank you for always being such an encouragement and truth -speaker to me, and to so many others. I’m so grateful that we’ve been able to share our hearts and our prayers together over all these years of blogging. Blessings and hugs and love dear sister.

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  8. Yes, thank you for sharing your journey, Bettie, so I can also understand those I know that have RA too. It’s a unique journey for everyone I am sure (as God made each of us unique after all!) When we let go of fear, God’s perfect love pours in. May you feel God’s love pouring into you today.

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    1. Thank you dear Lynn for all of your prayers and care! It really is such a unique journey for each one. I pray that your friends with RA will be so blessed to have a friend like you that wants to understand more to be able to care for them too! It really is a gift from our Lord, the one who understands best of all, when we share that understanding with those we love. Blessings & hugs to you dear friend!

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  9. Bettie, you are such an encouragement on how to walk this walk God has set us on – through your stories – and the suffering in your stories, you show me how to walk my walk. I am so sorry for your pain and suffering. I wish you did not have to experience that – but I am so very thankful for all that you teach me in how you walk your story! Love you, my friend!

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    1. Maryleigh I am so blessed that the Lord gave you encouragement here today. He really does know how to lift our eyes up to His grace in our lives, doesn’t He? I am thankful for the encouragement and love you bring to me also! What a gift from Him. Hugs and love to you dear friend.

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  10. Oh my goodness Betty I hear you here. And I get your flares. Fibro sister here and I also have occipital neuralgia and trigeminal neuralgia. My TN seems to flare in 6 week cycles. 6 on and 6 off. When it on there’s no doing anything. No reading no writing. And I love Prednisone it eases my fibro flares, but of course my rheumatologist doesn’t let me have it often. I take Lyrica but I can’t tell a difference.

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    1. Oh Paula, I’m so sorry for that pain you carry too! It is such a comfort to meet someone who understands, and to know that we can share our prayers! 🙏♥️ I tried Lyrica and it’s cousins, cymbalta, and gabapentin but sadly my body could not tolerate them. I have had several rheumatologists like yours who would only give me Prednisone after much duress. But my current Dr is much more open, knowing how little there is to help me otherwise. At my last appointment she actually said, well you know, 50 years ago, Prednisone was all they had! I will pray for relief and help for you dear friend!

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