I’m not usually afraid of the unknown. I realize I can’t anticipate or prepare for something when I have no idea what may be coming around the corner.
The problem arises when I know what’s coming, and there’s still nothing I can do to prepare for it… yet I know enough to anticipate it.
Confused yet? Me, too.
Here’s the thing. As each day has passed this week, I’ve gotten sicker. I’ve gotten more weak, more dizzy, more tired, more nauseous, more pain, more everything. The past two days I have struggled just to sit up and stay awake. What this tells me is that the doctors are right… I have got to get off these steroids or the Cushing’s will keep getting worse.
That’s the rock. Here comes the hard place.
The last time I tried a small reduction of the steroids, I woke up the next morning in more pain than I knew how to handle. It was ripples of sharp pains going down my legs from my hips to my toes, with my hips, knees and ankles feeling like someone was tightening them with a vice. I was stuck in bed, unable to walk or move for about three hours while I waited for the medications to kick in. That day I increased my steroids back up to normal, and despite the increase I still woke up the next morning and experienced the same pain, only it lasted five hours. Yes, five hours of biting-a-pillow kind of pain.
So… you see my dilemma. I have to get off the steroids or I keep getting sicker. When I try to go off the steroids, the pain is insane. This is where I wish it was unknown, because right now I can’t help but anticipate something I know I can’t do anything about.
Tomorrow [Sunday] I’m going to start a steroid reduction. And it’s a bigger reduction than the last one I tried. And unlike last time, at some point I have to bite the bullet and stay at the reduced dosage if I’m ever going to get off of these things. The part I know is what it will be like the first day or two because I’ve already been through that a couple of times. However, since I’ve never stuck it out past that point, the unknown is what will happen when I don’t increase the steroid dosage back up.
Rock, let me introduce you to Hard Place. We’re all about to become very good friends.
There’s a part of me that is resolved and ready to just get on with this. And there’s a part of me that would run far away if I could. But that’s the thing about illness… there’s nowhere to run. There’s no taking a break or a breather or a vacation. There’s only walking straight ahead into the storm and trusting that God will find a way to get me to the other side of it.
So, not to be overly dramatic or anything, but tomorrow I’m walking head on into the storm. And while I know you all pray for me all the time, and I am so grateful for that, this is the first time I’m asking for you all to pray for me. I don’t think the pain should get too bad until Monday, but after that I have no idea what will happen or how we’ll proceed. I have home nursing at my disposal, but mostly I just need for my doctors to know what’s best for me and I need to have the strength and fortitude to do what needs to be done, no matter how painful or scary it is.
I’ll be honest… I hate blogging about this. I hate telling you the gory details and I hate that this affects anyone’s life but my own. But more than one person has asked for more real information than what candy bar I don’t like, so I promise not to give you fluff for awhile and will do my best to let you know how it’s going when I can.
Thanks for being there, people. I know I’m so very lucky to have you.
Sweet, sweet Sara! Of course my PRAYERS will continue for you. Thank you for asking...even though I already pray for you like crazy...and for giving us even more specifics.
ReplyDeleteFriend, if there was more I could do ~ you know I would. I will pray for strength and continued courage. I have no idea how you do it, but you amaze me.
Here is K-LOVE's verse for the day...
"Don't let your hearts be troubled. Trust in God, and trust also in me." John 14:1
I think it is so fitting. Yes, difficult to follow at times...yet so true.
I'm praying ALWAYS!
Love and Hugs :)
Recent blog:=- Lifting Up PRAYERS!
Definitely praying for you!
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Friend. I'll be on the road starting Monday and won't be back at a computer until the weekend. :( Maybe longer. Know that even though you won't hear from me.... I'll be thinking about you, loving you, and praying for you.
ReplyDeletelove you!
Recent blog:=- Hard Lesson To Learn
i am praying.
ReplyDeletei wish i could do more.
i love you.
Oh, Sara, I will pray for the Dr.'s wisdom in what is best and the way to proceed, I will pray God's mercy in helping what ever lies ahead. You don't know how bad I wish I was closer to you so I could help you through this storm, I am there in spirit and will be praying. Thanks for sharing with us on this very scary journey. Hugs.
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I'll be praying for you, your doctors, your family and friends, and anyone else that is involved that can directly help you. I really love that you are able to share this hard time with all of us blogging friends, I hope that we are able to buoy you up in some form.
ReplyDeleteHere's hoping that the next week will not be unbearable.
So praying for you.
ReplyDeleteSo hoping it will be at least tolerable and get better. Quick.
Even more hoping it won't be as bad as expected.
sara, i'm glad you're sharing this. God KNOWS the way to the other side. i am praying tonight and will continue to do so. i cannot imagine what you are going through.
ReplyDeletelove ya!
Recent blog:=- LIVING!!
I am lifting you up to the Lord. I am asking pleading and begging Him to take some of this from you. I wish that I could sign up to take your burden for a bit. I am so sorry for the pain that you are going to go through. Please know that you are in my prayers and all of the other people that love you. My heart is breaking for you and the known. We all just need to stand firm in prayer that the unknown is better and will rule over the pain.
ReplyDeleteI know they are just words but I am praying for you!
Recent blog:=- Turmoil and Peace
Praying for you in Sweet Home Alabama!
ReplyDeleteI will be praying!
ReplyDeleteOh, Sara.....I'm praying.
ReplyDeleteRecent blog:=- Show Us Where You Live......My Wedding Dress.
I have been on Prednisone for years. I know how frustrating it can be. I pray that you feel better soon and God will give the doctors wisdom to know just what to do for you.
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Sara, I don't know you, but my good friend Theresa let me know about your rock and hard place. Please know that you are in my prayers and thoughts and know that God never ever gives you anything that you cannot, with Him at your side, go through. He will even carry you, He has said so. Have faith, and mine and many other prayers are with you. Katie
ReplyDeleteI'll keep praying and please keep being open and honest. It helps to know how to pray!
ReplyDeleteoh sweetie. I wish that this could be easier for you. You know you are in my prayers.
ReplyDeleteI hope that the decision is on of unity between you and your team,and that you go forth firm in the decision that you make.
Recent blog:=- Catching up on some free loot!
I'm sorry for asking a trivial question...I don't feel like it's my place to ask about your disease, even though I feel you are brave for enduring and for sharing with everyone. You are definitely in my thoughts and I wish you only the best.
ReplyDeleteI love you Sarah.
ReplyDeleteHolding you up, praying for strength
Recent blog:=- Zilch In Common
Wow, Sara. YOU are the face of pure bravery, to be heading into such difficult waters. I wish there were another option for you. Of course I will be praying for you, but I'm glad I can do it more specifically. You certainly are between a rock and a hard place, but a wise friend once told me this: "No moment from my God is a rock of burden. It's just a rock waiting to be broken apart into stepping stones". She even painted it on a canvas, and used the words to inspire others. ;)
ReplyDeleteFind yourself a copy of that quote, place it before you, and make it your focal point during the difficult days ahead. And every time you read it, know that many are praying for that rock to be broken down so that you can move freely across those stepping stones towards better days on the other side.
Take care of you, Sara!
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Sending healing prayers for comfort and peace. May your body accept the challenge to heal itself and recover your energy. May God cover you with a blanket of comfort and a cloud of healing. Blessings!
ReplyDeleteHi,
ReplyDeleteI found your blog through Colorado Lady.I was very inspired by your blog as I read through your posts it caused me to take time to think .I just wanted to say hello and I am happy that you find the time to blog , I think we are all connected in some way and what you have to say is very important.Thank you for sharing with your fellow bloggers.I will be praying for you as well .
Hugs
I find your blog very inspiring & will pray for the ease of your pain & for your doctors to have the knowledge for your best treatment.
ReplyDeleteRecent blog:=- Yo Ho Ho & a Pina Colada
You have my prayers.
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Dear Sara...
ReplyDeleteYou are a beautiful woman (no matter how Cushingoid you look right now) with a beautiful spirit...You have encouraged me in my own struggles to no end.
I'm in my own tight squeeze between said rock and hard place. Had to go off the anti TNF medicine for the psoriatic arthritis and am now experiencing many more symptoms and more disability. I'll tell you what: you pray for me and I'll pray for you!! YOu know what? I'll pray for you even if you can't pray for me.
I love you even though we've never met. It's hard not to cry right now...I wish I could give you a hug!
Praying always,
Cynthia
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Sara, I am praying so much for you today, and pleading to God to ease your pain and burden of this unrelenting illness. Please, please God....
ReplyDeleteI will think of you and pray throughout the day.
Recent blog:=- Thursday Wanderlust
Praying for you Sara.
ReplyDeleteRecent blog:=- Thankful Thursday
Sara, thanks so much for your honesty! We all appreciate it. So sorry to hear this is lingering on and on for you and hoping that things are better soon. Big hugs to you!!!
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Len and I pray for you, will continue praying for you and will ask others to pray for you at this very difficult time. May God ease your pain and make this burden light. We love you so much.
ReplyDeleteOh Sara. I'm so glad to be reading this this morning, before church. I will put you on our prayer list and we pray for each need, as a church body, each Sunday. We have the SWEETEST pastor who lifts the tenderest prayers up to God's waiting ears. And I will continue to pray for you.
ReplyDeleteWe have a friend with a serious liver disease (on the transplant list right now) and he had to go through steroid reduction and then off. It was really bad at first but actually got better.
I also had to quit taking a med earlier this year that I had been on to control pain for 10 years. It was an anti-seizure medicine. I thought I couldn't live without it but found out it was seriously damaging my liver and nervous system because of porphyria. My pain ratcheted up and I wondered how I would ever live like that. But I did it in increments and lived through that one, then when I'd had some relief, I did it again until I was completely off. I would have NEVER thought I could live without it and now I barely notice any difference except the horrid side-effects that were killing me are greatly improved. (I still have another med that doesn't give me side effects.)
I tell you all this to encourage you that if, in some really tough I'm-SOOO-sorry-you're-going-through-this way, you can get through this, maybe it will get better. My heart will be with you as you walk through these HORRID times and I SO hope to hear that it is getting better. I, like everyone who loves you, wish we could lift this burden off of you. No matter how many people are around, pain is a lonely thing. I pray the Comforter wraps his arms around you tightly during this time.
Love, Robynn
Recent blog:=- Hail, Caesar! Stop The Chariot!
I am praying for you, friend.
ReplyDelete-T
stepping up my prayers for you, as i am in recovery i have nothing to do but pray, and sweets you are on the top of my list..love you
ReplyDeleteSarah we will be praying fervently for you. All my love to you. I am sorry that you have to go through this. Keith's aunt had Cushings which went unnoticed until it had progressed to a very bad place. I hope very much that you are able to get off the steroids. I wish I were close so I could come help with Riley and just be there for you. My heart goes out to you. Also: I'm proud of you for your honesty and transparency. I know it isn't easy for you to open up about how painful and difficult it is for you right now. Love to you.
ReplyDeleteRecent blog:=- I'm Going to Mess Up!
Sara...I am praying for you. If anyone can do this challenge...it is you. Strength to you.
ReplyDeleteShae
Recent blog:=- An excuse...
So praying for you ... daily.
ReplyDeleteYou brought tears to my eyes. Hopefully this reduction will be completely different than the last, and your body will thank you for what you're doing. I pray God will take away your fear, and keep you safe, and that you feel the love and prayers coming from all of us.
ReplyDeleteSweet Sara, you're being so brave and I am truly humbled by you and your courage. I hope you can feel our prayers and our love surrounding you and holding you up! Much love to you and Riley!
ReplyDeletepraying for ya, Gitz!
ReplyDeletehaven't talked to ya in a while but it doesn't mean i haven't been praying for you. (my computer died forever a few months ago)
take care!
Amy :-D
Recent blog:=- Rainbows n Barns.
Even before reading this post, you were on my mind.
ReplyDeletePraying,
Julie
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Sara, I've dealt with the steroid issues with my Crohns disease. I pray for you to get thru this situation ... may He touch you with His healing hands to alleviate the pain. Blessings & prayers, TTF ~Marydon
ReplyDeleteSara, I just heard of your story from Suzannes blog and even though we dont know each other i wanted to let you know I will be keeping you in my thoughts and prayers
ReplyDeleteRecent blog:=- 20 Years Later
You will continue to be in my prayers!
ReplyDeleteOkay buddy. Ready, get set, go. Go for it with gusto, with trust, and with the understanding that you are not alone. Go forward in faith, knowing that our God will carry you when you can't even crawl through the storm. Go with patience, allowing yourself to feel and be frustrated and find the good in an awful situation. Go with anticipation, that when the storm clears, it will, indeed, be better on the other side. Go with strength, knowing we are all here carrying your weight, your struggles, and those unknown to us prayers from your heart to our God's ears.
ReplyDeleteAsking people to pray for you is difficult. I am so proud of your humility, and I am sorry that this dumb disease is making you more humble than you'd prefer to be. :)
That rock? I don't give you permission to climb underneath it. You struggle to stay on top of it, waiting for rescue. You can only see the sun if you're not in shadow...and I know you know what I am saying. That hard place? I am pushing with you. No voice in your ears but that hush of all of ours chanting "Go Sara, Go Sara!!!" It is a quiet hush, we won't be too demanding, just ornry enough to keep you pushing.
I know you are tired, pain wracked, uncomfortable, and not feeling like you. You are the on the start of making it back to a new normal. You can do it. I have your back, and am praying for you. Right now.
I love you friend.
Shan
(and her girls)
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Sara - I found you by way of Colorado Lady. You poor sweet thing, you're definitely going to be in my prayers for healing, for strength, for faith, and for those around you. It sure looks like a lot of people love you!! Take care ~
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Extra prayers for Sara coming up!
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Praying, as always.
ReplyDeleteI am praying for you!
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I am praying and will be praying. I understand a bit about pain and how it feels to finally slip into sleep but awake still in the same or more pain. Let the tears flow as it will help release the tenseness of the pain. I'm so sorry you are going through this.
ReplyDeleteEvening, morning and noon
ReplyDeleteI cry out in distress,
and He hears my voice.
Psalm 55:17
~ God of Grace ~
Please help Sara Frankl.
Sustain and uphold her.
Release her…
For You are powerful.
You care and You love her.
I proclaim Your love in the morning.
I proclaim Your faithfulness at night.
In Jesus’ name, Amen.
Prayer based on:
Psalm 30:10 - help
Psalm 54:4 – sustain
Psalm 63:8 – uphold
Psalm 25:15 – release
Psalm 29:4 – power
Psalm 86:13 – love
Psalm 92:2 – proclaim
Recent blog:=- if one part suffers…
Oh, Sara! My heart is crying out to the Lord for you right now! I'm praying strength and relief and peace for you. If only your readers and friends and family could take this from you. I bet you'd find an army of folks lined up, willing to take this pain from you. I'm so sorry you have to go through this. But you are absolutely one of the bravest people I have ever met. PRAYING...
ReplyDeletePraying for you always. Hang in there.
ReplyDeleteOur Family holds you in every prayer we say together.
ReplyDeleteWith love and support,
Bill, Leslie, Alex, Joe, and Abby
I will definitely be keeping you in my thoughts and prayers. The canvas I won is hanging over my bed and is a constant visual reminder of the wonderful person who made it. I am so sorry you are having an extra difficult time right now, but you are right to be honest with all your "peeps" so we know if there is anything we can do to help you.
ReplyDeleteTake care.
Recent blog:=- The Sweetest Thing
always praying!
ReplyDeletepeople...like many of us have been doing for kate mcrae, we must storm the gates of heaven for gitz!!
lets get on it!
Recent blog:=- pimp my post
Oh, Sara, I can't say anything but PRAYING PRAYING PRAYING. And sending lots of love. I'm so so sorry you're going through this.
ReplyDeleteRecent blog:=- Oh yes, she bakes
Dave & I are offering up our heartfelt prayers frequently, as always, and are stepping it up now even more than ever. We give you our tender hugs and do so with loving affection!! Our love to you, dear-heart!
ReplyDeletePraying, praying, praying for you, sweet friend!
ReplyDeleteAnd I'm just catching up on your blog, crying my eyes out over Smiley Kate. As a mommy to girls almost her age, I can only imagine what a blessing it is to her parents that you're helping keep her memory alive.
And I could have written your "Reasons for Hating Almond Joy" word for word. :)
Recent blog:=- molehill monday
I'm praying for you to get through the pain quickly and that you will be able to be back to your routine soon. May God give you His peace through it all.
ReplyDeleteRecent blog:=- I'm alone!
Sara~You're in my thoughts and prayers daily. May God hold you in the Palm of His Hand and give you peace.
ReplyDeleteTake care, my friend and put your chin to the wind!!
Will be praying for you! It's Monday, so I know what you're going through is tough today. I'm praying for peace and comfort over you right now!
ReplyDeleteI'm not be going to be able to be as eloquent as others that have left messages, but know you are in yet another person's thoughts.
ReplyDeleteWhen you do come back ..maybe practice SHORT entries -literally... then maybe they won't weigh on you like I'm guessing they do for a perfectionist (I'm just guessing here).
:)
Do take care.
Recent blog:=- First Watercolor and Finger Painting
Sara, our prayers are constantly with you. I wish so much that you did not have to go through this pain. Trust in God's grace to help you during this difficult transition time. With lots of love, Deb and the boys.
ReplyDeleteChecking in to say I'm praying praying praying...I love you...no words.
ReplyDeleteRecent blog:=- Choosing a difficult path
Hi Sara! I don't know you but I read your blog for the first time today and want you to know I'm crying and praying for you! There are no words that I could say to even begin to help you but know that I am praying and that God loves you so much! Dani
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Sitting outside and praying. Watching Dakota and praying. Cooking dinner and praying... and so it goes. All day, I've thought of little else but you and my sweet Stellan. Thinking positive and warm thoughts for you and keeping my fingers crossed that you are doing okay! Much love sweet girl!
ReplyDeleteSara I am praying for you always. If I could take even just a porton of your pain for myself, I would in a heartbeat. I would.
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Hey Sara - thanks so much for your candor and forthrightness - we all need it to pray for the right healing!! Thinking of you friend, Cynthia in MT
ReplyDeleteThank you for asking for our prayers. I wish I could do more.
ReplyDeleteRecent blog:=- People Making A Difference – Pastor Lyndon Harris
Sara, know of our prayers for you! God will hold you and your body as these medications leave your system!
ReplyDeleteThinking of you this morning and praying...
ReplyDeleteRecent blog:=- The God-Lesson Reba taught me
Sara, I came over from Suzanne's blog. Your post just makes me want to cry out in dismay. You are so brave to write down your illness and asking for prayers is the right thing to do. I am praying for you and will continue each day until I know you are better. May God bless you and help you through what is ahead.
ReplyDeleteLove and blessings, Jeanne
Recent blog:=- 2ND TIME AROUND TUESDAY
may God bless you!
ReplyDeleteTurn your ear to me,
ReplyDeletecome quickly to my rescue;
be my ROCK of refuge,
a strong fortress to save me.
Psalm 31:2
Hard place, meet the ROCK!
Sara, as you are into your steriod reduction I pray you are finding strength in God. May He give you overwhelming peace to carry you through.
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I've been thinking of you often during the past few days. I hope you're hanging in there. I mailed you a few pictures of the kiddos; I hope it helped - just a little :). Keep your chin up - I'll keep praying!
ReplyDeleteLove, Amy
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Thinking about you, praying for you, loving you. I hope you are progressing well. I fear you are suffering terribly. God be with you, Sara. I really, really hope His hand will touch your body and bring healing, at least some if not complete. My heart is fixed on you right now. I wish I could do something for you. I will believe in Him for rest.
ReplyDeleteRecent blog:=- Blister Fixer
praying that your pain is minimal and tolerable or not at all. You are strong, I know you can do it.
ReplyDeleteSara, I am a little late but I am sure you need prayers. I am not familiar with your disease, but I will read about it. My daughter took steroids for a long time and lives with pain now everyday and takes pain medicine everyday, so I have some idea of what you are facing. Praying for you.
ReplyDeleteBarbara
Thinking of you, dear Sara.
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Thinking of you this morning. Praying and asking God to give you mercy and relief. You are right here on the tip of my heart Sweet One.I'll be praying all day. love love love to you
ReplyDeleteRecent blog:=- Shattered Dreams
Praying like crazy for you!
ReplyDeletePraying for you!
ReplyDeleteSara, I don;t know you but found your blog and just want to say you ARE in my prayers as well as your doctors that they will have the knwoledge and wisdom to treat you well. God bless you! I am praying. I never heard of Cushings so will now "google" it and find out. Pinky
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Sara, just wanted to let you know that I am praying each and every day for you and asking God to ease your pain and purge the steroids from your system. I pray that you will be well and whole very soon.
ReplyDeleteKatie