Sunday, June 28, 2009

It Just Is What It Is

I’m almost afraid to say this because it will inevitably cause something else to happen, but for right now… in this moment… I’ve stopped getting worse.

* knock wood if you got it *

And for right now, not getting worse is good enough.

My friend Nicole gave me a [loving] talk the other day about the fact that, in my disdain for complaining, I actually never talk about my life in the present tense at all. And she’s right. [don’t you hate it when that happens?] I tend to talk about things after I’ve worked my way through them.

The biggest part is that I don’t want to complain… I don’t want to hear myself speak aloud all the troubles if I can’t follow it up with what I’m going to do about it. For me, it always seems like I’m just adding weight in my heart when there are problems and no solutions.

It’s complaining without purpose. And I just really don’t like how that feels.

It’s also difficult because, in truth, the direction my life is heading is simply not pretty. And talking about what that means for me, if I look at life realistically, means a lot of loss. For me to process that I have to give myself a chance to sit for a moment and look at that reality. To acknowledge it, to mourn it, to let it go. That’s hard for people to listen to because their first instinct is to tell me I shouldn’t look at the future, I can’t give up hope, I can’t let myself go there. But I have to go there. It exists and pretending it doesn’t isn’t going to make it go away.

Trust me when I tell you I have hope. If some miracle happens to me tomorrow I am going to embrace it with every fiber of my being. But I also have to equally embrace the not-so-fun-stuff. If this is my life, if this is where I am at, then this is where God is at, too. And if I’m wasting all my time and energy trying to pretend the future doesn’t look like it does, then I’m wasting God’s time as well. I know that I need to face what life is looking like now so I can accept it, hand it to Him and find joy in the midst of it. It would be nice to go around it, but the only way is through it.

It just is what it is.

To answer the question some of you asked in the comment section: Yes, the past three and a half weeks have been like this simply because I left the house that day.

I have to tell you, I was prepared for it to be rough but I had no idea how bad my body and it’s reactions had gotten. I think because I have been so diligent about isolating myself and keeping things consistent for my body and health, it just wasn’t clear to me that I was still getting worse despite the lack of exposure. There was still some piece of me that thought it would just be a hurdle. I was still thinking of masks and oxygen and ways to get around this, but there is no way around this. I am completely and totally, from here on out, confined to my home.

No open doors or windows, no sitting on the patio or letting Riley go for a walk. No friends’ homes, no movies, no church, no outings. I won’t ever again sit by a bonfire to watch a sunset. I won’t smell the fresh dew on the grass in the early mornings when the air is crisp and the lake is smooth as glass. No weddings or funerals or graduations or school plays. More than all of those things put together, I think of my nieces and nephews – the lives they have ahead of them – and my heart aches as I become a supporting player watching from a distance.

But it is what it is. What I’m going through now, because I left my home for a few hours, is something my body just can’t do again. I was expecting the level of pain from the extra movement and short ride in the car, but the issue with my lungs/body reacting to everything and anything it was exposed to was far more than I imagined. And the problems with the resulting medications has simply added to the intensity of it all.

Hence, the long few weeks. I can’t tell you how much I appreciate all of you being flexible with me not posting everyday. I miss being on here so much, but it’s been a weight off my shoulders to have the freedom to just sit down and write when I feel I can. The steroids and breathing treatments and other meds have a lot of side effects for me, which means I have to really just go with the flow of the moment. The most obvious side effect is that I now so closely resemble the Stay Puff Marshmallow Man from Ghostbusters I’m waiting for offers to star in the remake. I’ve expanded so quickly that at some point everyday my skin actually aches. Add on the shakiness, the sleeplessness, the exhaustion that fights the constant feeling of being antsy, the hot flashes and the weird feeling of a slight vibration all through my body all the time, and you have the parts that I can learn to live around.

It’s the other stuff that has made this hard. Because of my disease, I have gone off and on steroids a lot. And because of my disease, it takes larger doses of steroids to take care of the problems. We try to not stay at the higher doses for longer than absolutely necessary because each time I go on and taper off, the rebound pain that comes afterward is more intense. So, after the two week mark this time, I tried a small step-down of the steroid. My lungs weren’t great, but I wanted to see if the small change would make a difference or if they would stay stable. Two things happened. One, my lungs didn’t stay stable. Two, my body went insane.

The next morning I woke up to a lot of pain in my knees and I could barely hobble behind George to get to my meds. It got better after I took the steroids but never went away, and would intensify before my next dose. It wasn’t fun, but it honestly didn’t alarm me… weird pain happens to me all the time so I stayed at the lowered dose that day. And then the next morning I woke from a dream where I was screaming in pain, to realize I really was. I had waves of pain from my hips to my toes and struggled to get up and out of bed, only to put my feet on the floor and discover I couldn’t put pressure on my legs. I couldn’t walk. The pain was too much and my muscles wouldn’t hold me… I got myself to the walker and sat on it, pushing myself on the walker to get my meds, all the while in more pain than my brain could process. It seemed to take forever and, in a word, it sucked.

I took my meds and waited for them to kick in and quickly realized that I should not have decreased my steroids. Yeah, I catch on quick like that. So I’m back on a higher dose and take it during the night as well to make sure it stays evenly in my system. Before you all start to type frantically in the comment section, I promise you I’m perfectly safe in my home, I have my Lifeline button if I need it and I have no intentions of doing anything different without being prepared on all fronts. Promise. :) I am, admittedly, dreading what will come when my dose changes, but whatever happens I will be thoroughly informed of what to do by my doctor and will be ready.

The reason I’m telling you about it is because so many have emailed to ask how I am and what is happening here, and I feel like I owe you the truth even if I don’t like how that looks. And I don’t like how it may worry you. And I don’t want you to feel bad for me. I’m also telling you so you can understand what I mean when I tell you that how I feel changes frequently throughout the day and makes writing consistently a bigger challenge than usual. But you should know the first thing I want to do in my moments of strength is to sit at this keyboard and type for a bit, even if it did take all week to put together this long post. :) And it’s lovely for me to know that you’re still out there when I do.

So, life has difficult times. That still doesn’t mean they are bad times… it just means we have to deal with what is in front of us when it’s in front of us. For now, I’m adapting to this challenge. I’m taking my moments that require rest, taking my moments that require me to challenge myself and push, taking my moments of sorting through the realities and taking my moments of joy in the middle of it all.

Oh, and taking lots of moments with this face:

IMG_1324 2

So, now you know my day-to-day… hope you’re not sorry you asked. :) Know I really am dealing with this ok and my goal in life hasn’t changed: I’m simply going to fulfill God’s plan by living the best life I can with what I am given.

It just is what it is.

45 comments:

  1. Oh Sara! Choking back tears as I visit your reality! Its such an honor to be allowed into this journey with you. I am deeply humbled. Thank you for your courage in sharing this with us.

    I too want to think what about masks and what about other ways to protect you and... but I hear what you are saying. Surrender, with hope, and your ever present grace.

    So beautifully said. I am not only knocking I am "pounding" the wood for you, and saying more prayers for peace and strength! Such an honor sweet girl! What a blessing you are 8-)

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  2. Sara, my heart goes out to you. Even in your honesty about your terrible pain, your amazing tenacity shines through. You are ever on my mind and in my prayers. Love and a big hug to you. I am hoping for steady improvement. In Jesus' name.

    Recent blog:=- Some Guys are Just Meant to be Dads

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  3. i'm so sorry you've had so much difficulty lately.... my heart goes out to you as well.

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  4. As always - moving, inspirational, honest, thought provoking, and bittersweet.
    Sending love and prayers for healing, joy, and the fulfillment of your goals in life.

    Recent blog:=- Pugs in Desperate Need of Help

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  5. You are amazing. And I for one will be here whenever you can post, no matter how long it takes you to do so.

    Recent undefined:=-

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  6. I feel like I have grown so close to you through your blog that it really bothers me that I cannot just show up at your door to grab your meds for you or bring you a quick surprise something. You and Riley are in my heart always. I pray you feel some relief soon.

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  7. What a beautiful sense of perspective you have. Thanks for checking in with us and letting us know what's up. I'm keeping you lifted in prayer.

    Recent blog:=- I Just Don't Understand

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  8. I'm so glad that you felt well enough to tell us what's going on! And you're right - we're all here, waiting and praying for you. I pray you are well and all manner of things will be well for you. Many blessings!

    Recent blog:=- In which it was never between you and them anyway

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  9. Don't consider it complaining - consider it giving us specifics to pray for.

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  10. Princess Cat's PajamasJune 28, 2009 at 4:12 PM

    (((((Sara)))))

    Take care!

    Recent blog:=- Learning to read

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  11. Sweet Sara ... praying for your healing! You are an inspiration and I am thankful to you for being so transparent. BIG HUGS from Texas!

    Recent blog:=- A Prayer

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  12. Knock, knock, knocking on wood here in Georgia with you.

    Exquisitely honest post. Love it. I held back the tears until I saw sweet Riley's expression. I think he understands. God's love shows up in unlikely places--even animals.

    Love,
    Julie

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  13. Mary Grace McNamaraJune 28, 2009 at 6:04 PM

    Thank you so much for sharing your life with us. It really is quite an inspiration and makes me stop short when I begin to complain about some little nothing.

    My dad always says this and I think it is how you live your life: Press on regardless. There's an eternity of rest ahead.

    Keep giving it all to God and bringing others to do the same. Hopefully we will all rest together in eternity.

    MGM

    Recent blog:=- Progress on 9 Patch Pillow Children's Quilting Class Sample

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  14. Christina J. WerdebaughJune 28, 2009 at 6:30 PM

    Knocking on wood with you *smile*
    Sara, I appreciate you sharing with us your reality, and I send you (((hugs))) and lots of love from WV! I only make it out of my house 1-2 times per week right now, and it takes me days to recover from any activity. My symptoms have progressed lately too, and I struggle with letting others know what is going on because I also don't want sympathy or to sound like a whiner or not to have a solution to the problem I am voicing. I'm looking at some pretty drastic life changing surgeries in my near future and reading your post really helped me to think about my reality, too. I'm so sorry for your loss and for your suffering, and from one Stay Puff Marshmallow Woman to another, "You've Got A Friend In Me."
    Blessings,
    Christina W.

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  15. Thank you for sharing this with us.

    I understand the not wanting to complain. My limitations are not as severe as those with which you struggle, but i don't want to share them. However, if i don't people expect more of me than i can do as i "look so normal."

    People often write in these comments how "inspiring" you are; it is true that the way you grab life such as it is & all the things you do are very inspiring. However, sometimes when i read that it feels a little trite. I guess because we don't have a word that encompasses all that you do & struggle with on a daily basis.

    I do find you inspiring, & i think of you often thru my day as i struggle with different issues. God grant me a small portion of the grace with which you present to life! Sometimes i feel a bit guilty, too, when i find myself complaining - usually in my head - of my own limitations.

    God bless you dear. I pray he does send a miracle. But if not i pray that you continue to have strength & his comfort. Thank you for letting us know where you are.

    Recent blog:=- Well . . .

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  16. Still PRAYING for you, Sara!! Praying more than you'll ever know. I so wish there was more I could do for you and I know I say that all of the time, but I truly mean every word of it!

    Please know that my prayers will continue for you. If you ever just want to talk...just log onto Skype and I'd love to chat with you!!

    I get to see Jorgen next Thursday...kind of a surprise (for g'pa & g'ma) and sudden trip to AZ. So, I'll take lots of pictures and some video and hopefully that will give you something fun to look forward to! It's amazing what a 4 month old's laugh/giggle can do to you!!

    Love ya, friend!


    Recent blog:=- Wordless Wednesday!

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  17. Sara, I can't tell you how valuable your honesty is to me. I love that you don't feel the need to pretend, especially with God. I agree that it is often more natural to process sadness before I share it. I get that. But I am so glad you let us all in closer so we can be of more specific prayer support for you!

    As for blogging, do what you are comfortable with. A sentence here or there...a paragraph maybe. Don't worry about how long it is. As they say, 'quality, not quantity'!

    Take good care Sara.

    Naomi (and Quincy)!

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  18. Sara- Praying for you today and always! Thank you so much for sharing your life with all of us in the blog world. I hope things continue to improve little by little each day! Get the rest you need and know that we will all be here waiting for when you feel ready to return!
    Elizabeth

    Recent blog:=- Happy Mother’s Day to me!

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  19. Sara, "It is what it is" is our mantra around here. At various times in our lives, my husband and I have found only those words to comfort one another. And you know what? The words do bring some kind of peace. Just a reminder that "it" is exactly what God intended to happen, and the only choice in the matter is how we react to the situation at hand. You my dear, continue to "react" better than anyone I know. Well, maybe you don't react to things like, say, AIR so well ... but you sure as heck react to the rest of it pretty darned well :-P
    I feel so blessed to "know" you, but at the same time am majorly bummed that I don't "know" you and can't come hang out with you. And Riley. And George. I think the 4 of us would be fast friends.
    Take care of you!

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  20. Thank you for your honesty and speaking openly about your life and all its ups and downs.

    You are an inspiration to the rest of us!

    Praying for you!

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  21. Sweet, stylish, sometimes sweaty (from hot flashes) Sara...you are amazing. I am so proud of you for being this transparent and allowing those of us that have come to love you like blood into your heart and your life.

    My heart aches for what you are going through right now, and I wish I could take it from you. I was talking to Jason, and he asked if I wanted to get on a plane and come keep you company at 3am while you were on the 'roid rollercoaster. I would do it in a minute if you need me.

    I am praying for you, the girls are praying for you, and I am here if you need me. You just keep truckin' little lady, even with stretched skin and incoherent thoughts from meds. You are going to make it, and we are all here for you....

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  22. Knocking on wood, but quietly--or else the dogs would sound the "OH MY GOSH, SOMEONE'S HERE!" alert, rush to the front door, and wake my husband.

    Thank you for your open post. We're all praying for you and wishing there was something we do in person instead of from far away. Is the mobility in your hands directly affected, too, or is it everything else that makes computer time tough?

    Do you read comments on your older posts? I'm catching up, so I wanted to reply to your godson post here. My goddaughter, 3.5 years, is pretty outrageous and her mommy (my best friend) has posted some quotes at http://rebeccaandtom.blogspot.com/
    It's well worth a visit if you have a moment for a laugh (or careful smile). My favorite:
    After using the potty in the morning, Liesl pulled her pajama pants up over her bare bottom:
    Mommy: “Liesl, don’t you want to put some undies on first?”
    Liesl: “Nope. I’m goin’ commando.”

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  23. Oh Sara, you've been going through my mind, a lot. I hate it that you have so much pain. Hate it. You're amazingly strong, and the fact that you don't want to complain is admirable.

    BUT, we as believers together form the body of Christ (1 Cor. 12)
    1 Cor. 12:26 says: If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it.

    You do an exceptional job rejoicing with others and I think it's healthy and also essential for you to share (like you did in this post) about your struggles. Sharing is not complaining. If one part suffers, every part suffers. That's how God set it up. If you suffer, we all suffer with you. That's how we want it to be and how it should be. We suffer together. Only you feel your pain, but we do suffer with you. Maybe you don't want us to, but it just is what it is... ;-)

    If I feel awful, the Psalms really speak to me, Psalm 91 especially lately.

    You're in my prayers.
    Anna

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  24. I just copied and pasted your life goals, printed them out and stuck them on my bulletin board by my desk.

    Have you read Heaven by Randy Alcorn? His non-fiction and fiction both paint such an awesome picture of our eternal home. I always get so excited about heaven when I read his stuff--and it puts my junk on earth in perspective.

    You remind me of some of my heroes--Shadrach, Meshach and Abednego.

    "If we are thrown into the blazing furnace, the God we serve is able to save us from it, and he will rescue us from your hand, O King. But even if he does not, we want you to know, O King, that we will not serve your gods or worship the image of gold you have set up." (Daniel 3:17-18)

    Prayed just now that God would deliver you from your blazing furnace. Praising Him that you're serving Him faithfully "even if He does not."

    Love you!!

    Recent blog:=- just like big mama

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  25. I'm praying that you are feeling well enough to be back regularly soon. May God grant you peace and soothe your body. You're in my prayers.

    Recent blog:=- Kate-isms

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  26. I just love you so much, dear Sara! I wish you could see my heart right now....it's pierced, screaming with empathy for you and your situation, overflowing with love for you. You are continuously in my prayers.....continuously!! Simply, I love you! <3

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  27. Thank you for trusting your readers with the profound truth of your illness. It's a little like I suspected and I am continuing loving you the only way I know how right now...through prayer.
    Here's a hard question...IS there ANYTHING else I can do for you to make your burden lighter? ANYTHING. I realize the vulnerability it would take for you to answer that...but I truly want to know. I love you...I'm praying...I'd love to do more.


    Recent undefined:=-

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  28. You are an amazing woman, Sara, and you know how much we all love you. I so so so wish you didn't have to go through all of this, but I love that with every keystroke we see Christ in you. You are always in my prayers.

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  29. Know that I along with many others are praying for you!

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  30. Blessedtwice (rhonda)June 29, 2009 at 12:20 PM

    Sara- Thanks for keeping us updated on you, but please know that you don't *have* to. I wish more than anything I too could drop off at your apartment to chat or just give you a hug. Please know that you are in my prayers OFTEN, here in alabama...

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  31. It took me several attempts to read this to my dear hubby yesterday. There were times all I could do was choke on my tears. You are so brave and courageous. Thank you for being honest with us. It may be what it is.....but that still doesn't make it an easy pill to swallow. You are on my heart and in my prayers. I'm like everyone else, if I lived closer, I'd be over all the time checking on you. So....I'll just have to drop in here. Blessings, SusanD

    Recent blog:=- Turn and Face It

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  32. Hello - I know you don't know me but your blog is inspirational as well as entertaining. I know things are difficult and I admire your courage and clarity. My thoughts are with you. Take good care.

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  33. Thank you for sharing your world with us.

    You are are one of my favorite stops in our blogging community.

    Friends share their experiences with each other, good and bad. That is what makes a family. You are an important part of our family, as are Riley, and now George. :)

    You are 100% correct that life is what it is. All any of us can do is make the most out of what we have. You are doing a better job of that than anyone I know.

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  34. You are amazing. Thanks for your courage and faith and for sharing it with us.

    Recent blog:=- Love turns the whole thing around… ..I know the heart of life is good

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  35. You are so brave and such an inspiration... I am humbled by your bravery, your attitude and your joy. God Bless

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  36. Praying for you. So glad you have Riley there with you. I know he is a great comfort to you. You are so very strong and a great inspiration to us all.

    Recent blog:=- Please stop by

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  37. Still praying for you and thankful to see through your words what a strong, inspiring person you are. I just finished reading the life story of Padre Pio. He's a wonderful saint to turn to and ask for intercession.
    I'm glad Riley is there to keep you company! What a cutie!

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  38. I agree with Ed....sharing is what draws us close....and makes us family! So, thanks for sharing your current day-to-day and know you have my prayers to be feeling better soon, friend!
    ~Cynthia

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  39. Happy Tuesday! Just checking in with you. Hugs to you and Riley pup :-D

    Recent blog:=- Blog Meme.

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  40. Thinking about you today and hoping the sun is shining through your windows. :) Hang in there and keep leaning on the Lord for strength!

    BTW - there is a blog award over at my site waiting for you. :)

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  41. Hi. I knocked on wood. 8-)

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  42. Hey Sara,

    I'm so glad that I read this. Thank you for posting this. (Sorry, I've been a little behind on blogs lately). Praying for you tonight, friend.

    Sarah

    Recent undefined:=-

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  43. My hands actually have been bothering me more, but the bigger issue is just the energy/feeling sick/not being able to focus thing. The other problem is when if I type for very long, the motion seems to be flaring up the pain in my ribs and chest... guess it uses the muscles there more than I thought. So, to answer your question, it's a combination of it all, I guess! :-P

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  44. oh my goodness, i love you so much.

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