My temporary disease

“Perhaps the butterfly is proof that you can go through a great deal of darkness yet become something beautiful.”

For starters, I just want to say if you happen to find yourself on this page– I am sorry, seeing that it is some kind of pain that probably brought you here. I know what it feels like to have pain on the inside, but look fine on the outside. I also want to say that though I live with chronic pain and don’t know what days my pain will feel like coming about, or even where, my faith is not ceasing. I am learning more and more that pain doesn’t have to steal my joy. I know that everyone’s disease is different ranging from mild to severe to even fatal or in between those, and this is why not one single person should feel alone in this. I look forward to swapping stories with you, dear friend! Feel free to connect via the prayer page too. You are not alone. My biggest supporter is my mother. She’s been there for me in my darkest hour.

Ways I’ve coped living with chronic illness and pain

IMG_7785
Why yes, this was an adorable moment for me in the mountains of Keystone, CO feeding chipmunks.
  • Reduce stress in your life (it helps when I’m outdoors somehow in nature).
  • Exercising to boost relief with natural endorphins (I jog).
  • Prayer.
  • Try in some way to keep being a part of doing what you LOVE.
  • Find your support system.

 My story 

Lupus SLE sprung up on me in September of 2013, at age 23. It was only a month later after I had moved off to Colorado for school and work that the pain had started. I was working with special needs children and started my masters program on campus in Colorado Springs in August. One night my shoulder started burning and when I woke up I was limping and barely able to brush my hair or move my fingers.
I was misdiagnosed at first with RA. My RF (rheumatoid factor) was 640 and to be “normal” it will usually be below 10. I have the symptoms of arthritis (I swell in 2 or more joints), and I test positive in most all my blood work for lupus. The pain just started spreading slowly to different areas until I was properly diagnosed in April of 2014 with systemic lupus erythematosus.  

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This was one of my favorite little spots to sit at when I lived in Colorado Springs, CO from 2013-2014. I loved fishing at this lake and it was a great mile jog round the park.

I switched to online schooling to finish my masters degree, sold all that I had, packed up my car and moved back to Texas in July of 2014 for better support and treatment. Though mine is said by my doctor to not be life threatening, my immune system is prone to attacking my healthy joint tissues systemically (throughout my body) and pain comes whenever it feels like it. Flares come and go, as do my exhausted days. Describing the pain is difficult but when a flare happens or I’m in pain, it feels like bruises anywhere inside my body, and someone is either jabbing needles in them or pressing them for long periods of time. Sometimes it feels like tiny screws trying to make way in my joint or bone areas. I don’t deal with external symptoms of lupus and it’s mostly internal. I take medications and go for jogs. I live a normal, active life despite pain.

Below was a post written in the beginning of my diagnosis in 2014.

Essentially what happens.
Essentially what happens.

Some mornings I just want to stay in bed. I know I have to get up, get ready, go in my car and drive, but just turning my steering wheel to back out is a pain. Sometimes I’ll go to sleep earlier than usual just because I know I’ll shift for a few hours and I need to get up early for work. One day, I’ll feel like super-woman at work with the kids, but the very next I can barely walk or push them on a swing. It’s all the things I never had to think twice about doing. The pain can last all day be it in my hands, wrists, feet, shoulders, elbows, knees, fingers or my back. I get bouts of sharp pain in random places. All of a sudden just pouring a cup of coffee is aggravating. I’ve now noticed my blood disorder showing up on my wrists where I feel pain. I basically bleed internally into the skin from within my body; my doctor said it could be the pressure. I’ll also admit to feeling embarrassed. I’m so young, but I don’t feel it. Sure I get frustrated at myself and maybe even annoyed, but I’m not going to feel bad for those feelings either. It’s in these moments I realize, I am not a super-woman.

Most times I pray, but sometimes I cry and sometimes it’s a mixture of both. There is a lot of pain, but there is also much hope. At first I asked God why do I have this pain? Which slowly turned into Lord, what do you want me to do with this pain? How do I glorify you in this?

I felt warm when I felt His sweet answer. Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you (1 Thessalonians 5:16-18). He never said give thanks in only the good circumstances, He said, in all circumstances. In knowing this, that is enough for me. Though my physical pain hasn’t changed, I awoke the next morning after I found out my news, with a different heart in it all. I’m grateful that I’m not worse, that it’s not killing me and that I can still function and move. It doesn’t mean I’m thankful for disease, but it makes me grateful for the things it hasn’t done to me. Sometimes our hardships that we sometimes question God in are pivotal moments only to draw us closer to God; to realize our continual dependency on Him. I have learned it’s possible to feel the pain of disease, yet still have your heart feel joy. How is this possible? This is where I can point to Jesus Christ. This is where I can glorify God. He is the joy in my heart keeping it safe from satans long-term diseases like depression, anger and bitterness (which I’ve totally experienced at some point with this disease).

This disease is just another thing in my life drawing me closer to God. I’m in pain, but my heart doesn’t have to feel it. Together, pain and prayer have opened up a channel of communication between God and me and it will never close. Open up that tunnel with God. You won’t regret it. Don’t let satan take your heart.

I want to encourage you that whatever pain you are going through, whether it be emotional or physical, or both, to pray. Pray right now. Sure, this is a “chronic long-term disease” that they say can’t be cured, but I serve a God who works on His own term. I used to think I needed to be healed immediately, but now I’m learning how much I am growing out of this and whatever pain comes my way, it matters what I do with it and how I continue in my faith. I still believe this is only temporary pain, serving a long-term purpose.

Resources

Rest Ministries

What is Lupus? 

Lupus Foundation of America Facebook 

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“Jesus does not make light of pain. He relieved the suffering that comes from sickness (Matthew 4:23-24) and ached in the face of death” (John 11:32-36).

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56 thoughts on “My temporary disease

  1. dtoft

    Thank you Savannah. There is another pain that can be experienced originating from the inside similar to lupus. Please, not tooting the proverbial ‘horn’ here, but the post before my last is entitled ‘Shame’. Take a look if you have a chance. Be Blessed – David

    Like

  2. christensen0226

    I love your spirit and encouragement. Keep your chin up. I know what its like to be where you are. I too have Lupus and fight it everyday. I saw that you read my first Living with Lupus post. It’s an everyday struggle for sure. I hope that you are doing well right now. Its really nice to have a community of people when we are going through this. I know that I can feel really alone and that I can’t talk about it.

    Like

    • Savannah Hardcastle

      Dear Christen..it brings me pain to see that you ever feel lonely or can’t talk about it to others. Sadly, I know what that feels like as well. When I first diagnosed, I went into a depression and isolated myself for close to a year with just family being my rock (mainly my mother). I’m here to tell you you’re not alone, dear friend. I enjoy reading your posts, keep writing. I am here for you. I email other chronic illness warriors all the time. Don’t hesitate to email me if you ever just need to vent about something personal through my prayer page uptop.
      -Sav (hugs and spoons to you).

      Like

  3. Anna

    I love your courage and your strength to find the beauty and blessings in all of the pain. I wish for us both and for all those who suffer with chronic illness and pain that we are transformed and healed and whatever happens, that love and joy be the greater part of our lives.
    Blessings,
    Anna

    Liked by 1 person

  4. LydiaA1614

    Savannah, you are an amazing daughter of God! I too have a chronic illness (several of them) and like you, I rejoice in my relationship with Jesus Christ instead of wallowing in my pain. Over the past three years, I have been unable to attend church very much because just getting ready for it exhausts me, and the chairs we sit on are not conducive to my pain. Getting to know you through your writings is a great pleasure.
    The verses that have helped me through the dark days and brightened the good ones are James 1:2-4 and Philippians 4:13.

    Liked by 1 person

  5. rolerrol

    Hey Savannah!
    Reading your testimony is so inspiring. I will not tire of reading how God is working in your life! God is teaching you a lot and you are getting stronger! May God continue to increase your light!!!
    Rolain

    Liked by 1 person

  6. maevakap

    Oh My, Savannah.
    Oh my.
    How beautiful is this. How beautiful is your blog, how beautiful are YOU.
    It had been a while since I had spent a loooong time on a blog, reading reading and reading again. Reading and smiling. Smiling with tears in my eyes. Smiling while praising Jesus for what I was reading.
    Yet, this is what i did while reading your blog.
    The faith you have, the ability you have to be grateful in the midst of pain, the ability you have to look back and learn, always learn from what you live, is amazing. You’re so inspiring. You have such a beautiful heart. You’re such a Princess. Honestly. WOW.
    How many people would be able to go through what you go through with this perspective?
    Thank you so much for sharing you story, keep on sharing it please. We need more of inspirations like you.
    You’re such a conqueror. Heaven is probably rejoicing over you at this very moment.

    Liked by 1 person

    • Savannah Hardcastle

      Maeva, holy canoli. . .you made my heart sing with bliss as to how uplifting another sister in Christ can be.
      Thank you so much for reading some of my blog– I just love writing out of my heart in hopes that it will touch others in some way or form.
      You are such a beautiful spirit, I feel like we are kindred spirits! :)
      Yes, this sudden sickness has it it’s downs, but knowing God is taking care of me and that I will ALWAYS be a child of God is comforting.
      It’s been so rough sometimes. . .one of the roughest parts about having an “invisible illness” is that most people won’t ever understand and so it’s hard for anyone to sympathize with how you’re feeling on a given day or that you just want to stay inside.

      I can’t thank you enough for taking the time to write such a beatiful and sweet remark to me. It def. made my day better! :)

      And about the title– yea, well it kinda just popped up because I LOVE mountains and hiking and so the title came about like that :)
      I LOVE your blog, it’s friendly, and inviting. You have a giving heart, may you be blessed, Maeva.
      -Sav

      Like

  7. Mary Adrienne

    I rejoice with you, Savannah, in your faith and joy in our Lord, and I pray with you for His divine strength with which to carry this burden.

    I was reading another of your recent posts about your life not being picture perfect and just wanted to confirm from my own experience what you said about letting others in.

    Always being the strong one and never sharing your painful experiences also means never letting others see your vulnerability. It means passing up opportunities to receive the gifts of humility and gratitude that come with accepting another’s help. I spent too many years trapped in that strong, independent woman. 60+ years into this life, I finally understand the tremendous strength that’s required to allow others to see my vulnerable self…to allow them to simply love me with their kindnesses and prayers. I guess, simply put, God’s grace is felt not only in giving to others, but in willingly accepting others’ gifts. It’s been one of my most difficult spiritual struggles.

    Blessings on you and know that I’m praying with you. Mary Adrienne

    Liked by 1 person

    • Savannah Hardcastle

      Mary, thank you. This was so uplifting, powerful and touching. Letting others in has been a struggle for years. . .but now, it’s like I know we ALL have our own struggles; we should all be there for each other, love each other…just care.
      Thank you so much for your words. . .I admire your ability to also share your heart here, and be vulnerable as well.
      -Sav

      Like

  8. Jeffrey H. King

    Savannah, thank you for introducing yourself by way of likeing my “Sometimes a star…” post. After reading this post of yours, I can see why. I can certainly identify! May I share this verse that has sustained me through many dark days and nights – “Be strong & of good courage; do not be afraid or dismayed, for the Lord your God is with you wherever you go.” Joshua 1:9. I will be following your blog, as you obviously have good things to share!

    Like

  9. Misce

    Hi Savannah, I found your blog through the comment you left in SheReadsTruth. I just want you to know how much you’ve inspired me with everything that you’ve written in here… You’ve inspired me with your faith and trust in the Lord in the middle of the pain that you are going through…

    I was diagnosed with an auto-immune disease as well which caused the loss of my first pregnancy, my OB said, that my disease is related to Lupus and has a possibility to progress to it in the future… I was very afraid when she said that (it was 2yrs ago), sometimes I feel minor joint pains and I become paranoid.. but it hasn’t gotten worse than that until today by God’s Grace..

    Reading your post today encouraged me and reminded me to not be afraid no matter what might happen to me in the future.. indeed, the enemy wants to steal our joy by making us feel worried and afraid. I know you’re encouraging a lot of people, and I see the light of Jesus shining in you sister! Be encouraged, and continue pressing on, He holds you in His hands! Prayed for you today sis! :)

    xoxo, Misce

    Liked by 1 person

    • Savannah Hardcastle

      Hi Misce. . .I must say your comment also uplifted me. I really appreciate your kinds words, this is the main reason I write–to uplift others. I’m glad that by the grace of God you arent doing worse…but I hope you never feel that pain again. God is our ultimate healer :o) always believe in that.
      Thank you for your prayers….you are the kindest! Thank you for visiting my little nook. :) Feel free to email me anytime :)
      -Sav

      Like

  10. Tania Ortega

    Hello Savannah,

    I saw your comment on the article that Alyssa Joy Bethke wrote on eharmony. It caught my attention that we have a similar story and same age. I’ve no idea how I got into your blog, but I thank God for it. No only we have a similar story in the dating area, but also in the health area. I was diagnosed with RA when I was 10 years old. It’s been a tough journey, but He has always been there. I’ve asked the question “why” a thousand times, but I know He has a purpose for everything. It really encouraged me they way you see this season of your life.

    Blessings!

    Like

    • Savannah Hardcastle

      Hi Tania. Thank you for reading and I’m also grateful you stumbled upon my blog!
      This has been a journey…I’ve been up and down, I feel some sort of pain everyday, and yes, it’s frustrating, but I’m never letting go of His hand again. I let go for a brief period when I got really hopeless…never again. I pray you don’t feel the pains you have been and I’m sure you are a strong warrior for our King of Kings. Would love to converse more with you and how you have gotten through the pain and kept your eyes and heart on Jesus. Feel free to add me via fb–on my little menu :o)
      Blessings,
      Sav

      Like

  11. Freedomborn ... Aussie Christian Focus

    Hi Savannah, I’m sorry to hear you are suffering but so pleased you are trusting in God to strengthen you as you go through it, I have been diagnosed with Lupus too, but I have been Miraculously healed of other life threatening conditions so I do not doubt it can happen again , for the pain I use God’s Balm, I will leave you a link for you and I will pray.

    God’s Balm – http://freedomborn.wordpress.com/2013/03/11/a-special-gift-for-you/

    God does not want us to be Happy Clappy about our our pain and hardship but to rejoice that He is with us as we go through the hard times, as we see in the Scripture below and as you shared. I hold onto God’s promises and know I can Trust Him.

    Isaiah 43:1-3 – Do not be afraid, for I have ransomed you. I have called you by name; you are mine. When you go through deep waters and great trouble, I will be with you. When you go through rivers of difficulty, you will not drown! When you walk through the fire of oppression, you will not be burned up; the flames will not consume you. For I am the LORD, your God, the Holy One of Israel, your Saviour.”

    Jeremiah 29 :11-12 For I know the thoughts that I think toward you, says the LORD, thoughts of peace and not of evil, to give you a future and a hope.

    Lamentations 3: 33 For God doth not afflict willingly nor grieve the children of men.

    Christian Love from us both -Anne.

    Like

  12. mkingr

    I had a question about one of the symptoms you mentioned in your post. “I’ve now noticed my blood disorder showing up on my wrists where I feel pain; I basically bleed internally into the skin from within my body. My doctor said it could be the pressure.” Can you explain that more? I ask because every so often I get red spots mostly on my palms (but sometimes on the side of my fingers) as well as under my heal and it is very painful. Itchy, painful, and hot. I’ve asked a few of my Rheumatologists about it throughout the years but they never gave me an answer other than, “I don’t know” or “it’s probably just Lupus.” So I don’t know if this is similar or different than what you are experiencing because if I could find an answer, that would be nice to know instead of it being a mystery forever. Loved your post and your faith. Stay strong and a good attitude goes a long way. Good luck to you.

    Like

    • Savannah Hardcastle

      Hi there :)
      So it sounds like our red dots are two different things, unfortunately. I wish I could give you more clarity, but mine is a blood disorder that’s called petechiae. Mine are just reddish aligned dots that can sometimes look like a rash but it’s completely underneath my skin only and I never feel anything with it or pain or even know when it pops up; I just look and it could be there–usually my back, shoulders, and sometimes my arms and wrists. It’s random, but can usually occur when there’s pressure on my body or skin.
      I really hope you can figure out what that is. . .try a dermatologist and not your rheumatoid doctor?
      Just a thought, and good luck.
      -Sav

      Like

  13. jennifercarder78

    I will be thinking of you & lifting you in prayer! I so love that song You Know Me! Steffany is such an anointed worship leader! I also love Come To Me off of that same project! “I am your Anchor in the wind & the waves! I am your Steadfast so don’t be afraid. Though your heart & flesh may fail you. I’m your faithful strength. I am with you, wherever you go.” So powerful! On Sunday night, I got to pick up the new cd Live at the Civic. They came to ATL & had it for sale before it actually comes out! So so good!! You Make Me Brave is so beautiful!! I highly encourage getting it as soon as it is available! :)

    Liked by 1 person

  14. Anna Bachinsky

    “This is only temporary pain; serving a long-term purpose.” Love this! Sometimes it is our hardest times and deepest sufferings that God uses most to bless others in our lives and bring Him glory! I will be praying for your healing and the testimony you will soon share with others because of this. Be blessed!

    Like

  15. oneintercessor

    I am sorry to hear of this. Remember Daniel 3:13-18. ‘Then Nebuchadnezzar in rage and anger gave orders to bring Shadrach, Meshach and Abed-nego; then these men were brought before the king. Nebuchadnezzar responded and said to them, “Is it true, Shadrach, Meshach and Abed-nego, that you do not serve my gods or worship the golden image that I have set up? “Now if you are ready, at the moment you hear the sound of the horn, flute, lyre, trigon, psaltery and bagpipe and all kinds of music, to fall down and worship the image that I have made, very well. But if you do not worship, you will immediately be cast into the midst of a furnace of blazing fire; and what god is there who can deliver you out of my hands?”
    Shadrach, Meshach and Abed-nego replied to the king, “O Nebuchadnezzar, we do not need to give you an answer concerning this matter. “If it be so, our God whom we serve is able to deliver us from the furnace of blazing fire; and He will deliver us out of your hand, O king. “But even if He does not, let it be known to you, O king, that we are not going to serve your gods or worship the golden image that you have set up.”
    It may not be that His plan is to heal you while you are on this earth, but you know you will be when you are with the Lord! He loves you just as much as ever and you are right that He will use this for His honor and glory as you submit to Him in love. I am sorry though and will pray for you.

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  16. Wendell A. Brown

    You selfless heart and spirit always holds a dear place in my heart! I am at once saddened by the news you have shared but also made happy by your strong faith. We are examples Savannah, our disabilities may seem to some to disable us but with what we have to deal with we are blessed doubly by God as he shares much more with us than others that our lives might inspire many others with all we share and do. Your are a treasure and a perfect example as you faith never swerves. As Job told his wife, do we only accept only the good things from God and not the bad, when his wife told him to curse God and die. He continue to praise God through all and stood strong in his faith in Gods grace and love. I see you that way my sister. I have not visited you of late but have kept you and your sister in prayer. I will share with you a poem that I wrote in March and shared. ‘Endless Grace’, I know like the insurance commercial where they say you are in good hands with Allstate, that you are in the best hands with God! Have a very blessed and wonderful weekend…hugs and blessings always!

    Endless Grace

    I thought of you when
    I was sad today, and you
    Made a smile appear

    Right on my face you
    Have replaced, a lost
    Moment’s unhappy tear

    And within the thought
    Of you came a brightness,
    Shining as bright as the
    Newly risen sun.

    As I quietly reflected upon
    The goodness I received,
    Realizing your outpouring
    Of grace is never done.

    Wendell A. Brown 2013.

    Here is a link for a youtube video which I recorded entitled ‘My Eternal Love’, http://t.co/UnOozeEjdP, and here is a second spoken word track entitled ‘ You Are”, http://t.co/J0GJgBv4ZI, this appeared also on my blog site March 30th And My Eternal love was shared on my blog Feb 28. I hope they will strengthen you…besides seeing the poems, you will hear me verbally speak the words while accompanied by music specifically written for the poems included on each track! (Smile)

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  17. tonyroberts64

    The God who can and does offer us His healing touch in Jesus Christ certainly has a wonderful plan for our lives, no matter what pain we must pass through. I pray you find purpose in your pain to live even more abundantly by God’s grace. And, according to God’s good will, that you find relief.

    P.S. You have a beautiful blog for praising the Lord!

    Liked by 1 person

  18. rolerrol

    Hey Savannah…
    The scripture that you have put on your blog, Jeremiah 29:11 is for you. God has great plans for you. Plans to prosper you and to give you an EXPECTED END! I stand with you in prayer and stand in agreement with you. You are healed! As you have declared so it is. Our God is great and mighty and nothing is impossible for Him! Savannah, the calling God has for your life is just beginning. It is just the begginning! The enemy may try to stop you but God is with you. He can be trusted.He will not abandon you.

    Like

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