Wednesday, July 15, 2009

Missing Me

I’ve been getting quite a few emails asking for an update on how things are going, so I thought it was about time to get a post on here about it. It’s funny… I’ve spent the past year telling you stories and sharing with you about how I’ve dealt with different things in my life pertaining to this disease, but it’s taking some getting used to on my part to tell you how I’m dealing with it as it’s happening.

But I also know there are many of you reading this going through your own health struggles, who can relate and might feel less alone in this. And there are many of you who want to better understand how to deal with situations when you run into people who may be going through those struggles, too. So while I don’t want to turn this blog into some sort of medical journal, I’m going to try to keep giving you the real picture of what illness looks like… along with silly stories about my dog trying to eat my thumb. :)

Although I hate to say it, right now my days fluctuate from being about the same as my last update, to some days being much worse. Physically, it’s a huge struggle that I’m trying to adjust to. I spend the first part of the day trying to work through the pain of steroid side effects in my legs that intensifies overnight, and on the “worse” days it’s a writhing pain that can last many hours and is more intense than I have words for. After that starts to get under control, I then spend the latter part of my day dealing with increased pain from the disease as the day wears on. In between are all the other issues with my lungs, not being able to get much of a voice out and doing breathing treatments. Navigating my way through the increased pain cycle is taking some getting used to, and it will most likely continue as long as we’re dealing with the steroids. Which, as of right now, looks to be a very long time. But I am starting to adjust to the idea of it being a slow process, and am trying to balance rest with the desire to not be resting.

Not that I’m stubborn or impatient or anything… :)

For me, one of the hardest things right now is that I really look sick. They say the eyes are the window to the soul and I have to say that sentiment is dead on. Because right now, my eyes are truly the only thing about myself that I recognize. I have had the experience of “blowing up” on steroids many times before, but never in the way I have this time. It reminds me of when actresses in movies will put on prosthetic fat suits, and you can see where they can pull the skin away from their face and reemerge as themselves from underneath. They are nearly unrecognizable, but yet in there somewhere. I know I am still in here somewhere, but not once have I not been completely shocked by glancing at my reflection. It pierces my heart every single time.

I’ve had people I know who are heavier tell me they know exactly how I feel… but the truth is they can’t. They didn’t go from normal to obese in a matter of weeks. The face they see in the mirror is the same face they have always known. Even pregnant women get many months to grow into their skin, and the weird displacement of the extra steroid weight in my face, neck and stomach make it all the more strange. Even my hair has gotten so soft that it’s starting to lose it’s curl… it’s absolutely amazing the changes medications can make to your body. I don’t think it’s something I’ll ever get used to… seeing someone else’s reflection in the mirror or the physical pain of expanding faster than a body can keep up.

But more than all of that, as I said in the beginning, is that I have always been so grateful to not look as sick as I feel. Yes, that can cause it’s own problems, too. When you are sick but don’t look like it, it opens up a door for people to judge more harshly. If you don’t look sick there are unrealistic expectations that are difficult to deal with or explain. But when you don’t look sick, you are also able to escape mentally what you can’t physically. You are able to look in the mirror and see possibility. You are able to be with people without them staring at the neon sign blinking over your head that says, “No denying this woman is feeling miserable…” When you don’t look sick, you get to present yourself however your heart desires. That luxury is gone for me in this moment.

I’ve dealt with eating and body image issues for the greater part of my life, so having this happen to such an extreme degree feels like a pretty cruel twist of fate. As much as it’s a struggle for me, I’m trying to approach it with the whole, It is what it is…” philosophy – I’m trying to joke about it, acknowledge it, deal with my embarrassment of it. Granted, I’m not going to be taking pictures or skyping with people… I have no desire to show anyone this new face I’ve got. But I decided awhile ago that fear has no place in my life, and I’m not about to start letting it back in now. So, while it hurts… while I hate it… while I would change it in a heartbeat if I could… I’m trying to make it just one more part of dealing with the daily grind. I’m choosing to adapt and adjust as best I can.

I know – with all the pain I am dealing with – this should be the least of my worries, but the reality is that it’s a big part of dealing with illness. And just for the record, before all the pep-talks start :) … I know full well it’s what’s on the inside that counts. I know people come in all different shapes and sizes, and that is a beautiful thing. I’m just saying this isn’t my shape. Or my size. Or my face. And sometimes… I just really miss seeing me.


  1. I miss you too. ;-)

    I don't care what you look like, if I could see you RIGHT NOW I'd be so happy I would squeel. Seriously.

    My heart hurts (EVEN MORE!) reading about your "daily grind" and while it's admirable of you to want to take it in stride, a good scream session always makes me feel better sometimes. Sometimes it just feels good got get good and pissed off. Then, you go about your merry self. ;-)

    I wish I had what you needed. It would be yours in a heartbeat.

    Love you Gitz.

  2. Okay, so "Guest" was totally me. I forgot that I'm at my moms house on her computer and my info doesn't automatically show up like it does on my laptop...which I left in ND b/c it doesn't work so I will be totally bummed when I get home and have a lame computer. CRAP.

    Love you!

    Recent blog:=- The Answer To The Questions….

  3. I hope you look like yourself again as soon as possible! Thanks for giving us a glimpse into your struggles, that takes courage.


  4. Cynthia Lott VogelJuly 15, 2009 at 4:12 AM

    Hi Sara,
    If it helps at all, I know a great deal about how steroids invade your body and capture your svelte self, leaving in its place a hideous imposter! I've sometimes spent months on high doses of IV steroids for my asthma and know all about the "writhing pain" as well...Not fun,my sister, not fun!! I will pray for you in your steroid hell...I always debate between the evils: is the disease worse or the drug?? But if you can't breathe, the choice becomes obvious really quickly...I love you with the love of Christ, and my heart breaks for you because I know what it is like to want to hide under your bed until you lose the steroid face!! Hang in there. Your beautiful soul is all we see on this blog and that's the real you...Nothing can take that away!

    Recent blog:=- My younger self

  5. Also been nice and big from steroids with my asthma. Then I nearly lost my baby in the one pregnancy and the doctor put me on progesterone. Well, at least my boobs increased at the same rate as the rest of my body: A cup to a D cup in a week. I just keep telling myself that I am in there somewhere and I will come out again. I am almost back to normal and you will be too. The way we see your words is the way we see you: full of hope and life and laughter and tons of love. On your blog, sharing your life with us, you can do anything.
    Enjoy the straight hair. My sisters in law keep telling me what a pain it is for them to straighten their curls. My hair wouldn't even curl in a perm!

  6. Jessica Schim TurnerJuly 15, 2009 at 5:31 AM

    we love you. can Elias skype with you?

  7. Gitz,
    You could not have said it better. Thank you for sharing your heart.

  8. So glad you have the faith to stand (and share with us) even when times are tough.

    Recent undefined:=-

  9. You are fearfully and wonderfully made. The "real you" comes out in your beautiful writing and that's all God ever sees, too. I will continue to pray for your health.

    Recent blog:=- Solitude

  10. Sara, My heart aches for you, your pain, your suffering, and your self-image. I so empathize with you. During chemo, the loss of hair, swelling from steroids, pain from surgeries, and generally feeling crappy clearly affects self-image. This post gives me more ammunition for specific prayers for you. God's faithfulness endures all things. I love reading your posts, but also want to know how you're doing really. Thanks for sharing. Hugs to you (wish they were in person). Blessings, SusanD

    Recent blog:=- The Beetle and The Ant

  11. Thank you so much for sharing and being so honest with us all. I am so so sorry this has been such a difficult time for you. You are in my thoughts many times each day and I am hoping you start feeling better very soon.

  12. Sara, I pray for you each and every day. I pray this passes soon, and you are feeling better and back to your self. Hang in there my friend...I love you, and hope you have a better day today.

    Recent blog:=- Pssst....I Have A Foot Fetish!

  13. Sounds like you are on some BAD MEDICINE! :*

  14. Sara, prayed for you this morning even before I read this. Now I know what I can be more specific in prayer about. Thank you!

    You are most precious! Like the Proverbs 31 woman whose heart is precious to God. Thank you for your transparency. Thank you that you exhibit strength and not a front. That is a blessing!

    Love you, friend!

  15. No pep talk here. No words of wisdom either. Just sympathy. And lots and lots of caring :)

  16. Brenda White SimmonsJuly 15, 2009 at 9:30 AM


    We both struggled with body image, so I can truly understand how difficult this must be to go through. No pep talk here! But for the record, you inspire a lot of people to live life to the fullest.

  17. Hello beautiful. Sorry you're going through such a hard time. I just hate that.

    Know the best thing about your blog? We see YOU. For who you are. And that's all we see. Not somebody whose sickness defines her, but someone whose Christ-likeness defines her. I love seeing you, however you are.

    "Your beauty should not come from outward adornment, such as braided hair and the wearing of gold jewelry and fine clothes. Instead, it should be that of your inner self, the unfading beauty of a gentle and quiet spirit, which is of great worth in God's sight. For this is the way the holy women of the past who put their hope in God used to make themselves beautiful." -1 Peter 3:3-5

    Pep-talk over. ;)

  18. Your words have given me much to think about this morning. I don't always "look" sick, but I sure feel it. To feel and look sick...until I read this, I thought I wouldn't mind it so much...thinking again.

    Yes, at least now I do have a chance at "pretending" it isn't what it is.

    I'm praying for, Gitz.

  19. Sending you a BIG cyber hug! [o] (but, a gentle one.)

    Will the steroid weight leave once you are off the steroids or will it be a slow process of losing weight?

  20. Laura Swan JinkinsJuly 15, 2009 at 10:36 AM

    No fancy lectures about how beautiful you are on the inside side. Just a big reminder that you are LOVED regardless of how you look (right now) on the outside. It's unconditional and without end. Love, love, love, love, love ... skinny, pudgy, curly hair and flat ... we all love you so much, Sara and the miracle is our love is a drop in the bucket compared to that of God. :)

  21. not going to give you any pep talk. not going to give you any spiritual words of wisdom. want you to know that i'm glad to hear from you and that i love ya!

  22. Hi Sweet One,

    You nailed it on this one...well said. You did not complain, or whine (which I am sure you're concerned about doing). You did not sound like you were feeling sorry for yourself--which is allowed as long as you don't wallow in it. You were real and honest and transparent, and probably helped so many people. Way to not let this dumb disease take that from you.

    Been there...the moon (balloon) face of steriods is awful. I DO know how people say they understand but cannot unless they've (a)been on high dose steriods multiple/extended times, or (b) have had one of those 20/20 body transformations. I have done (a) and wish instead it had been (b, seeing as it is far easier to recover/come back from. :)

    YOU ARE IN THERE. I promise. I "see" it in your words. You will emerge. It might be a bit different for a bit, but you have friends and an amazing God that will sustain you through this. Ya can't just live on Riles alone :).

    I do understand the desire to be sick but not look it; in that way, the disease is not defining you or taking something from you that others can see. It is a blow to lose mobility, but it is really nothing like losing the shape of you,
    the tendrils in your hair or the crinkle lines near your eyes when you smile(b/c I am SURE those are gone). It is okay to mourn the loss of that for right now. You'll come back. I am trusting in it.

    I am loving you, praying for you, and am "here" if you need me. This road right now just plain stinks. Can't say anything but that. I wish you did not have to travel it, but know that you're never alone.

    Recent undefined:=- Oh no! Comluv had an error with your feed, see message below!

  23. Perfectly written. Exquisite word choice. I love "fear has no place in my life." Such a universal truth. And you had to decide that. This truth doesn't just happen upon us.

    Cheering and clapping. You are such an amazing writer--no matter, no matter, no matter what else is going on. You won this round!

  24. Mary @ Giving Up on PerfectJuly 15, 2009 at 1:09 PM

    Oh, Sara, my heart just hurts for you. You are so strong, so real, so honest - and I am loving you from here. If I saw your puffy face, I promise I would love you just the same - but how AWESOME that God has provided all of us bloggy friends who can't see your face right now? To us, you are the same incredible friend that we know and love and pray for!

    I'm wondering about these steroids, though - are you on them for your lungs? Is that why you have to put up with them?

    Recent blog:=- Walk On By.

  25. I just hate situations where I don't know the right thing to say ... but I don't know the right thing to say! I hate to think of you in pain, and the suffering you're enduring. All I know is that this disease has robbed you of so much, but you hold safe the one thing that it can't touch ... your spirit.
    Take care of you!

  26. All of those sentiments given above, and then some....that's what I'm sending you today, dear-heart! Thanks so very much for offering the gift of you to us! ((((huggggggsss)))) & prayers

  27. Praying for you. Coming from an eating disorder family history, I totally get the body image ordeal. I mean, aren't you dealing with enough? Ugh! We all love you, but more importantly, God sees you as He made you and you are the apple of His eye!

    Recent blog:=- We'd Like to Apologize

  28. i love you.

    i just simply love YOU,

    Recent blog:=- a little mom and kota time…

  29. That must be so hard. I have dealt with body and weight issues all my life too and I can't imagine what it must be like to change practically overnight like that. Thanks so much for being so real and sharing so much with us. Wish there was something that could help! Hoping and praying that things get better for you soon.

    Recent undefined:=-

  30. Its truly very courageous of you to share with us this most personal and heartwrenching journey you are on. I am just going to honor you where you are at and thank you for giving us your best Dr. Phil (tell it like it is) version of how you are. Praying for you!

  31. I don't have a pep talk for ya, but know I will be praying for you! He is the best motivational speaker I know :-)!!

    Recent blog:=- Out Attempt at Inducing Labor

  32. hey.
    I don't even know what type of pep-talk to give you. I don't have the words for your strength and stamina and faith. You are an inspiration. But I'm sure you've heard that before.
    I love you. I think so highly of you. SO highly, Gitz.
    SOOOO highly.
    Gosh. I don't know how to even say it. You are incredible. I want to say I'm proud of you - but that feels like I'm talking "down" to you or something. I actually am proud of you in an "I really really look UP to you" sort of way.
    You are strong.
    As weak as you feel facing the pain and the day... To me, if I were to describe you in one word: STRONG.

    Recent blog:=- :)?

  33. Matthew Paul TurnerJuly 15, 2009 at 2:53 PM

    I pray for you. Nearly everyday. Whenever your face comes to mind. Honestly, sometimes it's your dog's face that comes to mind. But still, I pray for you. I wish I could do miracles.

    Love you dear friend.

    Recent blog:=- perhaps jerry was right about the teletubbies?

  34. Our heart is our most important organ. You have a very big heart. Let all the love of your friends, peeps, family, and your faith help keep your spirt strong.

    Love is the most important part of life. As for the rest, it will be what it will be.

    Recent undefined:=- Oh no! Comluv had an error with your feed, see message below!

  35. I love you Sarah!!
    Praying on the shores of California, Know that when the breeze of the ocean hit my face today. He was telling me that He was there for you.

    Know that you are the MOST courageous woman I have met with my heart.

    Keep strong. Praying beside you!!!

  36. Honey! I'm so praying for you! I have been and will most definitely continue! I would love to be able to do something more for you...please let me know if there is ANYTHING I can do!!

    Thank you for the update. I'm sorry you are in so much pain. It breaks my heart to hear that. Just know that you are LOVED so incredibly much and are such a witness to so many people!

    Love and HUGS,
    Jess :)

    P.S. It was AWESOME seeing a comment from you today!! Everytime I put a picture up of Jorgen, the first person I think of is YOU!!!!

  37. Robin~All Things Heart and HomeJuly 15, 2009 at 7:16 PM

    Thank you Sweetie for being real. No pep talk. I wouldn't dare. I don't understand but my heart aches and I'm honored that you gave me the chance to pray and to hurt (just a little)with you.
    I just love you to pieces and have you on my heart all the time~

    Recent blog:=- Aging Gracefully~From a Seventy-Something Perspective

  38. I hope sharing in some ways lessen the pain.
    Thanks for sharing.

  39. And I miss you. Praying for you. Riley - hug her for us.

    Recent undefined:=- Oh no! Comluv had an error with your feed, see message below!

  40. Hugs to you Sara. Praying that you feel better really soon.

    Recent blog:=- Park Entertainment

  41. Sara, you are a special person and I am so, so sorry about your pain and sickness. I feel like I know you and care for you -- I will pray that God will ease your pain and give you comfort. Loving you in Christ --

    Recent undefined:=- Oh no! Comluv had an error with your feed, see message below!

  42. Hi Sara,

    I read about you on Jessica Turner's blog and wanted to stop by and let you know that I'll pray for you. I'm sorry that you've been so sick and hope that you are feeling better soon.



  43. heart just aches for you and I want so badly to be able to DO something. I'm glad you vent and write and share and grieve with us. It's no small thing not to recognize the face in the mirror. I pray your need for these steroids will lessen, or there will be a different answer, and you can be relieved of these necessary, but awful, drugs. And I'm SOOOO sorry you are experiencing such agonizing pain with your legs. My heart, thoughts, and prayers, are with you.

    Recent blog:=- We All Scream and Then We Have Ice-Cream....

  44. Christina J. WerdebaughJuly 16, 2009 at 4:30 AM

    I understand how you feel. I am missing me too :'(

  45. Jesus, comfort Sara, and encourage and strengthen her in Your loving, caring, and capable way. Touch her body, and bring her relief from her pain and discomfort. Help her to see herself and others through Your eyes. Give her courage, joy, and peace to go through each moment of every day, and fill her days with laughter, love, and Your healing touch. Help us, her friends, to encourage her with Your inspiration, Your extra measure of creativity. Help us to be your loving arms extended. We are family, after all, in You, our precious Lord. May we joy together, sorrow together, and just be together, caring, sharing, and loving. Thank you for your strength when we are weak, and for promising to never leave or forsake us. Thank you for hearing and answering our prayers, and thank you because You are our faithful and our "never unjust" God. We ask you to fill Sara's home with Your tangible presence. Continue to grow her in Your ways, Your truth, Your light, and help us to remember You throughout our days. In your name, Jesus, Amen.

  46. Hi Friend, I wholeheartedly agree with the other Cynthia....your beautiful soul is what we all know and love! That said, it is difficult to watch your familiar physical self morph so drastically and see it happen so quickly and without your control. It pains me to see you suffering so....I wish I had a magic healing'd be yours!
    ~Cynthia in Montana

  47. I totally get that. I have Spina Bifida and my life keeps changing. I often don't know what to do with the changes. I just want my "normal" for a little while longer--God is that too much to ask?

  48. I am thinking of you always, and praying for you too. All my love to you.

    Recent blog:=- Say Yes to the Lord

  49. I want to thank you for being real and sharing your pain and struggles. I have been thinking about the verse, "If one part suffers, every part suffers with it..." (1 Corinthians 12:26). I am asking this question, "What does suffering with others look like?"

    "It is nearly impossible to feel someone's pain if we don't know that person's story." from "To Be Told" by Dan Allender

    Recent blog:=- honor one another

  50. Hi Friend.....just wanted you to know I'm thinking about you and praying for you. Hoping you'll have an improved weekend!!
    ~Cynthia in MT

  51. Hi Sara, I'm now to your blog. I won't pretend to know what you are going through - I only know what life is like to live with an ill spouse. Daily we struggle to muddle through side effects of immunosuppressant's. Hubby hasn't gained weight, just lost. Poor circulation and open unhealed wounds, kidney transplant, etc. I send my thoughts and prayers your way and believe that somehow in the midst of the journey God has you on - you will find peace and understanding. We, in our journey, attempt to find joy in the everyday stuff while allowing God to use us as He grows us. Praying, Cindy

    Recent blog:=- Here we go again!

  52. How quickly I can fall for a blogger full of so much joy. Seems silly to put it that way. I found a link to your blog and while I am bad and cannot remember how I got to you, I remember the individual commenting on your joy, your struggles. I had to know more and here I am, fascinated by a mindset I have been recently trying to achieve. I have never been glass half full-I want so much for my choices to continue to be more and more positive and I love the fact that you are sharing your life in a way I can relate to. Thanks for putting it all out there-I know I will be back when I have time to read through more of your entries.

    Recent blog:=- Now that damn song is stuck in me head…

  53. Sending you strength through prayers!

  54. my heart hurts for you.

    and i love you so very much.