Four Years – A Hope Day Wednesday Your Story

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Four years.

Four years of knowing that something was wrong with my body, but not knowing what it was.

Four years of emergency room visits and doctor’s appointments, only to be told that though the (many different) physician(s) could see the problem – they could not identify the causes. Sometimes, they couldn’t even see the problem.

Four years of deteriorating muscle and joint capability.

Four years of feeling like others thought I was making up an inexplicable illness.

Four years of unidentifiable pain, neurological symptoms, respiratory problems, and arthritic issues. At its worse, I began losing my hair from the scalp, and was regularly seeing a physical therapist. The many symptoms were attributed to a variety of unclear musculoskeletal diagnoses.

Four years, an incredibly short amount of time, can seem like an eternity under the right – or wrong – set of circumstances.

It took four years for the doctors to finally diagnose me with systemic lupus erythematous, better known as simply, Lupus. I now know that this is typical experience for individuals diagnosed with Lupus. But then, I didn’t know anyone who had Lupus.

When I was finally diagnosed, I was almost relieved just to know I wasn’t crazy.

And then the reality of my situation kicked it.

I had Lupus. I had an autoimmune disease.

People die from autoimmune diseases.

And then a single, terrifying thought appeared, challenging everything I thought I knew about faith.

I could die.

It was sobering, scary, and life-changing.

So, I did what I typically did with scary situations.

I ran and hid.

I ignored it. I didn’t know how to rectify what I believed about my God, with what I was now being told by my physicians. I didn’t understand how my God, a loving, good, and gracious God could allow me to have Lupus. Though trying to live faithfully, I had experienced so much personal pain during the years prior, and now – now this!

After everything that I had been through, I was now being asked to endure Lupus.

Though I surmised that I might have succumbed to more than a little self-pity, I did not care. I had suffered more than I felt anyone should, and everything within me screamed: “This Is Not Fair!”

To those around me it seemed that I didn’t really care. Things are often not as they seem. Perhaps, I tried to tell myself it didn’t matter. But it did matter. Despite what it looked like to those on the outside, inside, my whole world shifted.

At the beginning, I struggled in faith – a lot. I examined my situation over and over for clues to my future. Questions tumbled endlessly around in my mind. Despite what appeared to be superwoman composure, frightful scenarios swirled about my head, until I was dizzy with spiritual and mental exhaustion.

I was supposed to believe God for complete healing. Right?
What happened if I wasn’t completely healed? Did that mean that God didn’t want to heal me?
Maybe the lack of healing meant I wasn’t standing on faith? Was there doubt in my heart? Was doubt keeping me from my healing?
What did it say about my God, if I wasn’t healed?
Was I supposed to accept an outcome that didn’t include healing? If I did that, had I given up on a walk of faith?
Would that prevent my healing?

In the most hidden corner of my soul, I wept bitterly at my plight.

It felt like a cruel, harsh joke. I struggled to see God as a compassionate, loving, gracious Father.

It often seemed surreal. Sometimes, it still doesn’t seem real, especially if it is in remission. But then life happens, and the Lupus flares. The fatigue begins, and is soon followed by pain, fever, swelling, night sweats, hair loss, depression, migraines, infections and ulcers, and suddenly it can not be avoided: I have Lupus. It is then that I am forced to look at my situation, and choose the road that I will travel.

Will I choose fear, all but mentally declaring the worst possible outcome in the name of ‘preparation’?

Will I choose a pseudo faith? To onlookers, it’s almost indistinguishable, but in fact is little more than an avoidance of, and refusal to accept, my circumstances.

Or will I choose faith? Soul crunching, heart-rending, nose to the grindstone faith that requires me to face my situation head on. Faith that demands an unflinching determination to choose to believe that God’s answer is the best answer, because God loves me and I trust that His will for me is good.


twittericonThere is an often-overlooked magnificence to our suffering:

a most holy faith that is born of our greatest and most personal places of surrender. These are plots in our journey, designed as divine appointments with our Savior, that change us forever, and teach us what it means to glory in our suffering.

For when we choose to glory in our suffering, we also choose perseverance, and through the door of perseverance we can choose godly character, and through the door of godly character we arrive at hope.

twittericonHope gives us the courage to believe in a brighter tomorrow even while violent storms occupy our today.

Hope brings to our remembrance the faithfulness of God, as a single beacon of light, breaking through the darkness of our loneliest, blackest night. An inextinguishable flame, hope guides us through dangerous waters and deadly terrain until we’ve reached the safety of our journey’s end.

Hope drives us to press on, though the wind presses so heavy against our chest that each breath feels as if it could be our last.

Hope fills us with new strength when we have taken all that we know how, and are almost ready to willingly fall down in a fetal position, cover our heads, and cry out “no more!” Instead new power, His power, overflows from within us, compelling and enabling us not only to stand, but also to embrace and steady others, so that they can stand as well.

Hope in God never disappoints.

As I move forward on this journey called life, I will continue to face trials. I may even continue to face Lupus, but of this I am sure: the almighty God is on my side. He knows what is best for me and I trust Him. Because I have learned that He loves me. And His will for me is good.

For further study: Romans 5:1-5

For prayer on this topic, visit today’s Daily Hope & a Prayer devotional.

A Final Note: I have been blessed to receive an amazing outpouring of love, concern and support since this post was published. After reviewing, I realize that I had not established that I have had the diagnosis for five years now. The Lupus is currently managed through medication and only mildly active.  My prayers and purpose for sharing this post was born from my experience with a faithful, powerful God which compels me to share my reason for hope to others. Blessings to you! – xoxo, Letetia

Hope-Day Wednesday

Throughout the week, the Your Story Page is open to anyone who wishes to share their story of hope and grace with someone who may waiting to hear it. Simply enter your story into the form, with any other information that you may like to share. If you are a blogger, writer or have a website, feel free to leave your website URL for the readers to connect with you later. Then, on Hope-Day Wednesday, individual stories will be added to the Our-Stories page in order to offer hope and encouragement to someone who may need it.

Your story might change a life, save a marriage, restore a relationship, give a discouraged parent hope, or help someone to hold on for just one more day.

Happy Story Sharing!

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Everyone has a story. How many people know yours?? Visit Embracing His Will. Someone may be waiting who needs it.

your story

 

Are you a blogger? If so, please include your website URL and be sure to upload an image. Your Story may be featured as a guest post! If you are featured, or just would like to help spread the word about Hope-Day Wednesdays, please ‘Grab my button’!

Hope Day Wednesday: Share Your Story

Check the box to agree. • Your Story Terms of Agreement• Thank you for sharing Your Story!• Please review the following Terms of Agreement. • All content must be guest author’s original. Plagiarism is not permitted. When quoting others, please site appropriately. Please keep your submission between 200 – 1,000 words. • Images • Embracing His Will welcomes you to submit one image to accompany Your Story. If you are a blogger you may also submit one author image. If your story is featured, it will be posted along with your name and website information. Images should be directly relevant to the post content. If you’re including pictures of people, please make sure you have their permission to use them. If you’re borrowing an image we require proper attribution to the creator of the image. Maximum image size: 8MB • Links • Embracing His Will is pleased to give you credit as the author of your post. You will have the option to submit your name and a single link to a website that belongs to you. This may not be an affiliate link or point to an affiliate site. • We don’t allow links to your site within the post content unless it is directly related to the topic. You may also submit tags for your post. Stories with excessive links or any links that appear spammy will not be published. • Editing • Embracing His Will reserves the right to make edits to the piece where necessary to ensure the blog stays congruous with our values. Prior to publication of your guest blog post we will make sure you agree with these changes. If Your Story is unable to be published we will inform you know via email. • Extras • Embracing His Will reserves the right to refuse publication, remove blog content and change these guidelines as we see fit.

 

Embracing His Will

Post linked at Christian Mommy Blogger

Comments

  1. Dear Letitia, Hope maketh not ashamed. Oh, I feel so sorry hearing about your condition. I can only imagine how you felt. You are a brave and courageous person to share your life experience and yet give hope to others.
    Do not be discouraged, you are brave.
    Many Blessings and have a splendid weekend.
    Ifeoma Samuel recently posted…Everyday We Get That Chance!My Profile

    • Ifeoma, You are ever-consistent in your encouragement! Thank you, thank you! I have been trying to write that post for there years, lol! Finally, last night, I was released to. God bless you as you continue to do and seek His will, dear sister. – xoxo, Letetia
      Letetia recently posted…Daily Hope & a Prayer – April 10My Profile

  2. Thanks for sharing your story! God is faithful and He is always there, especially when we need him the most!
    Kim recently posted…The Feather Experiment: Learning about WindMy Profile

  3. It took me many years to be diagnosed with celiac. I’m fine now and it’s only managed by diet, but I was so sick. At its worst I lost all of my hair, lost 35 pounds, couldn’t remember things that had happened that morning, etc. I truly thought I was losing my mind.
    I know that sometimes it can seem like it’s so difficult to keep going, but you’ve got an awesome perspective and attitude.
    Stacey recently posted…Karate – Leading up to the big testMy Profile

    • Thank you for sharing your story and your encouragement. I too, remember the years where I thought I was losing my mind, and I’m pretty certain that there were others who might have agreed. lol! I pray that God would continue to strengthen us both. – Also, please consider sharing your story with my readers for Hope Day Wednesday! Blessings to you! – Letetia
      Letetia recently posted…It Takes all Kinds – Intricately Designed {and Link-up}My Profile

  4. I love your perspective on hope! Thanks for sharing.
    Heaven recently posted…Choose Love Through WordsMy Profile

  5. I can definitely relate to your struggle when you found out the diagnosis. I felt very similar when I struggled with our 2-year-old son’s diagnosis of leukemia. It’s a process to learn acceptance. I am so grateful I stumbled upon your site today at #RaRaLinkup. God bless!
    Jenni DeWitt recently posted…The Big UnveilMy Profile

    • I have just returned from your website! I have no doubt that your journey with Christ has been amazing. I have found that God shows up in the most beautiful, personal ways during our most desperate seasons. God bless your courage and heart, as you have endeavored to encourage others even during your own waiting season!
      Oh! And thank you for visiting! :)
      Blessings! -Letetia
      Letetia recently posted…Daily Hope & a Prayer – April 14My Profile

  6. My husband received a heart transplant a year and a half ago, after two and a half years on the waiting list and five months in the hospital. It was him, not me, and the emotions differ from what you are going through in your personal struggle. But I think I asked most of the questions you listed above. Prayer takes on a new concept and it is good to know that God is okay with those questions. My biggest one was not (and is not) “Can God?” but “Will God?” I don’t know that there is an answer to dealing with that one but knowing that He has our best at heart makes a huge difference.
    I hope you are surrounded by the strength of the Body of Christ as we were. That was one of my biggest lessons – God’s love and strength through His people. I’m guessing you are one feisty, independent woman. Please say “yes” to offers of help. You will bless others when they are able bless you. In fact, don’t just say yes – ask!!
    This piece is absolutely beautiful and oh, so powerful! Thank you for sharing “the reason for the hope that is within you.” I know God will use your story.
    Many blessings.
    Angela Martin recently posted…Jerk or Just?My Profile

    • The question “will God” at times seems more heart-rendering than “can God”. Before I knew that God could, and had not yet experienced the tangible truth of His power, I was without hope. But, once I know that God can, hope returns, followed by joy and peace – which seems threatened if I do not receive that which I am hoping for. But, God!
      Like you, knowing that God has my best at heart – and that I can trust Him – makes a huge difference. :)
      I am surrounded by loved ones, though only those closest to me know about the lupus. And yes, I am feisty and independent, and not the best at accepting help – less so of asking. :)
      However (and I will note that in the post) I was diagnosed 5 years ago, and currently the Lupus is managed. I pray God’s healing power, strength, peace and joy continue to surround you and your family! Blessings!
      -xoxo, Letetia
      Letetia recently posted…Daily Hope & a Prayer – April 14My Profile

  7. I’m so sorry, Letetia! Chronic illness is such a hard, yet refining struggle! It took me years to be diagnosed with fibromyalgia when I was 18 despite having it since preschool so I understand that horrible feeling of not knowing what is wrong. After a major car accident this past fall, I started having symptoms of Lupus too and have been seeing doctors trying to figure out what is going on. I’m so sorry for all of your pain and understand how hard that it can be to come to terms with it and how this impacts our relationship with God. I never thought I would say it, but I’m so thankful for my fibro because my relationship with Him wouldn’t be what it is today without it. Despite all of the constant pain, He is so very good :) Praying for you! I write about struggling with chronic illness too on my site- I’d love to connect more with you!
    -Sara
    S.L. Payne recently posted…The Lucky OnesMy Profile

    • Sara,
      Thank you so much for stopping by and offering encouragement! I have been living with the diagnosis for five years now. I just realized that it’s been that long, and can’t believe how fast time goes by. I agree, chronic illness is a hard, and refining struggle. And like you, when I look back on the times of suffering in my life, I see beautiful moments of walking with our Lord. Every season of suffering has produced beauty in my life, sometimes in ways that defy human explanation! (My children are an example but that is a story for another season.) I would love to connect more with you and look forward to it! Blessings! – Letetia
      Letetia recently posted…Daily Hope & a Prayer – April 14My Profile

  8. It is promised to be perfect in the next land my friend, when we endureth unto the end! The path you have chosen! :) Thank you for sharing a piece of your life story on the Art of Home-Making Mondays!
    JES recently posted…The Art of Home-Making Mondays ~ Please Join Us ~ Link Up #48My Profile

    • And I am joyfully looking forward to that next land! And learning to find the joy everyday in this one. :) Thank you so much for stopping by and offering encouragement. And thank you for hosting the link. Blessings! – Letetia
      Letetia recently posted…Daily Hope & a Prayer – April 14My Profile

  9. Kay Walker says:

    hi letetia :-)
    I too have been battling some kind of autoimmune disease…they STILL have not determined what it is. Lots of joint pain and a definite diagnosis of osteoarthritis with a high risk of fracture. The puzzling thing is my rheumatoid factor is sky high(275 and normal is 0-30!) They say that the osteoarthritis doesn’t cause the elevated RH factor…sooooo, I still don’t know what it is. Have wondered if I may have Lupus also…since my ANA was positive at one time but sed rate was normal. Oh well, just really confused and have lost so much of my thick hair…really depressing! Thanks for listening :-) and wishing and praying for you the best.

    • Kay,
      One of the many frustrating things about autoimmune connective tissue diseases is the diagnosis process. It can take years for the bloodwork and recognizable symptoms to match what we already feel happening in our body. I understand and sympathize with where you are. I remember when I began losing my hair, I have long locs, so I was actually losing whole locs! And no one could tell me why. But, even with that, God brought me through. He has been an amazing source of comfort and strength, and I have doubt that He will continue to comfort you. It has been my pleasure to talk with you, and I will pray for you as well. Come back anytime! Blessings! – xoxo, Letetia
      Letetia recently posted…Daily Hope & a Prayer – April 14My Profile

  10. To return to hope–no matter the circumstances–is always a gift of faith. So thankful you received that gift. Thanks for sharing your journey.
    Lisa notes recently posted…“Searching for Sunday” – Book reviewMy Profile

  11. Yes, cling to hope in Jesus … even in the midst of the darkest, most hopeless hours! Your swirl of questions was so familiar to me, as I have found myself in the middle of the same storm. Wondering the same things about my faith, my hope, and the outcome. Thank you for being real about this!
    Your neighbor at Meredith’s. :)
    Dana recently posted…The Second SnakeMy Profile

    • Thanks for stopping by and visiting! It’s very nice to meet you. I think great suffering often brings questions like that to try our faith, but as it is tried and stretch, it also grows. Blessing to you! -xoxo, Letetia
      Letetia recently posted…Daily Hope & a Prayer – April 15My Profile

  12. Oh Sweet Letetia, you have been such an encouragement today. As I read your words I wept from my heart for the beauty that you see even within the struggles you endure. I am so happy to hear that you are able to manage the Lupus and I pray that you continue to do so. God has used you to help people like me see His love in action. You are blessed. Though I don’t know you personally I feel a closeness to you. Thank you so much for sharing your heart. ♥
    Celi recently posted…Know Your WorthMy Profile

    • Celi, reading comments like yours mean more than you know. By nature, I am a closely guarded introvert, yet God has called me to tell others of His power, and to sometimes, use His faithfulness in my life as the example. But, I’ve determined to press beyond my comfort zone (although sometimes not as quickly or willingly as I should ☺️) if it means pointing to His glory. It encourages me to read that my effort did, indeed, point to Him. Thank you for that!! Blessings to you! -xoxo, Letetia
      Letetia recently posted…Daily Hope & a Prayer – April 15My Profile

  13. Wow! That sounds terrifying! Good to see you are keeping a good attitude about things though.
    Brittany at Equipping Godly Women recently posted…Five Reasons I Won’t Take Hormonal Birth Control (and a Much Better Alternative)My Profile

    • Brittany,

      Unfortunately, millions of people have similar experiences around the globe. Chronic illness is a hard walk, but through God, joy is possible. I am blessed to be able to share that message. Thank you so much for stopping by and visiting! – xoxo, Letetia
      Letetia recently posted…Daily Hope & a Prayer – April 15My Profile

  14. It’s a powerful testimony, Letetia. I’m so thankful that you chose faith – God is using you for His glory and your good. Stay strong. God bless you.
    June recently posted…Inspired by . . . 51 shades of purpleMy Profile

  15. Hi Letetia,
    A few years ago the word “Hope” took on a deeper meaning for me, when I hoping for healing for my son. I found out when I was 5 months pregnant with him, that there was a problem, something very small was preventing his body from developing the way it needed to, for him to live or have a healthy life. The doctors recommended me terminating the pregnancy because he probably might die inside of me or very soon after he was born. He did die but lived alot longer than they thought he would and long enough to change me. This is a long story, that I would definitely love the opportunity to tell in more details in the future.
    I remember writing 3 poems in the hospital about hope – they were called “Hope, Hope Was With Us, The Story of Hope.”
    I remember in one of those poems I say, that hope is hardest, when you need it the most. I ask myself those questions you highlighted leading up to the unknown. Not knowing what was going to happen to my baby. When my son died right next to me, he just fell into a peaceful sleep and God brought peace to my heart- He told “don’t worry, he is in good hands” and I saw Jesus holding him in His arms. Since then, I have had two baby boys. That experienced made me stronger than I ever thought I could be. That was literally and truly one of my worst fears, I lived through. I hope never to have to live through something like that again. This story is bigger than this comment box and it has so many elements to it, I hope not to forget it until I have written a book about it.
    Lupus is a disease I have heard its name, but I don’t know anything about it. I appreciate learning a little more about you and what you have been through and are dealing with in your life. I will pray for you on an even more deeper level. Glad to have met you through this bloggers community.
    Thank for sharing this intimate story with TGI Saturdays. Will copy my hope story from the comment box and put in the form above. Have a blessed day.
    Latisha recently posted…(Not) Sunday Show ‘n’ Tell -April Week 2My Profile

    • Dearest Latisha,

      Thank you so much for coming by and sharing your story of hope! I can not imagine the details of your journey, but I can imagine the beautiful relationship that was established between you and the Lord as He drew you from deep waters, and carried you safely to His shores. I have not lost a child, that I have given birth to, but I did lose one in early pregnancy. And I experienced a very similar place of peaceful acceptance, that was both beautiful and strengthening at the end. If we allow Him, God uses our most difficult seasons to birth the most beautiful work from our lives.
      I am certain He is doing that in yours.
      And I am honored that you are going to share your Story of Hope with my readers and will be in touch soon! Blessings! xoxo, Letetia
      Letetia recently posted…Daily Hope & a Prayer – April 16My Profile

  16. Thank you for telling this story. It is powerful and encourages my heart to deeper and deeper faith. Thank you for this! Cheering you on from the #RaRalinkup on Purposeful Faith.

  17. Leticia, thanks for sharing your story on #livefree and encouraging others to as well!

  18. I am so sorry that you have Lupus and have to endure all that it entails. My heart goes out to you and I appreciate you sharing this with us and your journey. May God bless you as you travel through on this path and be encouraged to know that He will never leave you nor forsake you and that He holds you in the palm of His hand. Be blessed to know that He knows what you are going through and He cares and so do we all. Thanks for linking up with us at Good Morning Mondays. Blessings to you Letetia
    Terri Presser recently posted…PASTA SALADMy Profile

    • I am continually blessed by His peace and grace as I travel this road called life with my Savior. And I appreciate your kindness and support! Thank you for your encouragement and for stopping by and visiting. Blessings! Letetia
      Letetia recently posted…Daily Hope & a Prayer – April 16My Profile

  19. There is so much faith — deep, walk alongside, soul crunching (your beautiful words) — in this. Thank you for linking up with #livefreeThursday. <3
    Suzie Eller recently posted…#livefreeThursday: I’d rather be a late bloomerMy Profile