Wednesday, February 20, 2013

Sometimes Life is Hard

I have started and restarted this post many times. This isn't my typical tongue-in-cheek, goofy, entertaining fare. There are no punch lines, no giggles, no jokes. I debated whether or not I should even write it. Something about putting the difficulties of the last few weeks in writing makes it seem more real, and I'll confess there is a very loud part of me that spends inordinate amounts of time in denial.

Now that I've been unforgivably vague and mysterious, I suppose I ought to get to the heart of the matter. It boils down to this: Sometimes life gives you lemons. Sometimes it hits you in the face with a cast-iron skillet.

My cast-iron experience began about five weeks ago. I went to bed feeling normal, fine, peachy. I woke up the next morning and I could hardly move. Every joint in my hands and feet, my wrists and ankles, were swollen and stiff. They were red and warm to the touch. The pain… I can't even really describe it. I felt wiped out, like I had a flu bug or something. I assumed that's what it was and just kind of put up with it. Days passed and things didn't improve. Then weeks.

There was a pattern to my suffering. Mornings were terrible. The stiffness left me with the shuffle of an 80-year-old. My hands were so stiff and painful I couldn't open doors or jars or type. By midday the swelling and stiffness improved, though it didn't disappear. The pain never left.

I finally admitted to myself that, whatever this was, it wasn't going away and made an appointment with my doctor. Blood tests and exams and lots of waiting later, we had an answer.

Rheumatoid Arthritis.

This was not what I wanted to hear. RA is degenerative, often miserable, and incurable. There are some great treatments. The longterm prognosis, while not fabulous, is far better than it was even ten years ago. Strides are being made all the time and I cling to those possibilities. At the same time, I am struggling to accept the reality of this. I will be living with Rheumatoid Arthritis for the rest of my life. The rest of my life. There will be days when just getting around the house will be a struggle. I may very well reach a point where my joints have been deformed and destroyed by this disease. I already struggle to dress myself in the mornings. I can't use a can opener. Doorknobs… don't get me started.

The next months and years will be filled with more tests, with plenty of visits to the doctor, with good days and bad days. We'll be searching for the right combination of treatments and therapies and exercises and life adjustments for me. No two people are the same. No one treatment will work for every RA patient.

I am finding this is a battle with more than pain and physical limitations. This has already been an emotionally devastating experience. The future I'd always anticipated has changed, though I don't know yet how much, how drastically, or in what exact ways. I have never been one who enjoyed uncertainty. I am a planner and go-getter. Having to wait for answers and accept that some things are simply unpredictable has been very, very hard. I haven't told many people about this before now, in large part because so much about it is still uncertain.

I am also in a constant war with my own pride. There is something so humiliating about being out in public, whether at the kids' schools or the grocery store, shuffling along, depending on perfect strangers to open doors, pushing the grocery cart with my elbows because my hands and wrists hurt too much or are too stiff. I recently missed one of my favorite writing conferences and not entirely because of the physical pain it would have caused. The thought of limping around the conference, asking people to lift my bags for me or open doors for me or pry the lid off my pain meds for me, was more than my battered little heart could take.

And, on top of everything else, I am bracing myself for the inevitable flood of unsolicited advice I am likely to receive. Plenty of people will give me lists of things I have done to bring this on myself--foods I shouldn't have eaten, vitamins I should have been taking, etc. I'll, no doubt, be inundated with miracle cures and alternative therapies and reasons to ignore the advise of my extremely intelligent, expert doctors. Please don't be one of those people. Please. Chronic illness, whether physical, emotional or mental, isn't an open invitation for criticisms, sales pitches, or laymen's diagnoses and prescriptions. If those dealing with chronic illnesses want those things, we will ask. If we haven't asked, we don't want it.

I have a busy year ahead in terms of this illness and my family life and my writing career. I will be focusing my writing for now on editing and preparation for those books already scheduled to come out in the next 12 months. I likely won't be doing many signings or appearances, especially in the very immediate future. I cannot say when I will have something new ready to go. (What is coming out will be new to you, so that's something, right?)

I just want to thank all of you now for being supportive and understanding. I firmly believe there is a power in positive thoughts, in collective caring, and I am grateful for all those who have and will keep me in their thoughts and prayers as this new chapter in my life unfolds. You will likely hear more about it than you actually want to in the coming months and years, but words have always been an outlet for me. I hope that writing about my struggles will help me get through them.

In the words of one of my favorite Irish proverbs, "It is what it is."

69 comments:

Sara @ Mom Endeavors said...

Oh Sarah! :( Hugs! I hope they work out the perfect concoction of things to minimize symptoms. You're in my prayers!

Luisa Perkins said...

Ach, love. Cast iron skillet, indeed. So sorry. You will be in my prayers. Thanks for this brave post. xoxoxo

RobisonWells said...

That really sucks. But rest assured that all of us will think you're awesome whether you can open cans or not. And the doorknob thing--it just gives us a chance to be more chivalrous.

I'm always amazed at how you continue to be one of the most cheerful people I know despite all of your medical problems. You're an inspiration. You'll be in my prayers.

Rachel Rossano said...

(((gentle hugs)))

Karen Adair said...

You are so loved, Sarah! Truly. Truly. Truly. My thoughts and prayers go out to you at this difficult time. My hope is that you will yet accomplish the many goals and desires in life you have. And you will have us, your friends, to support you and hopefully lift you up. For all the friends you've interviewed on your site, I feel truly blessed to be counted as one of them. I am, right? :) Love you. Take Care. And I have my own cast iron skillet in hand for anyone who shows anything less than the upmost respect for this trial you face. :) :)

T.J. said...

Sarah, that really sucks.

So, I know pride (very personally) and I know that RA is not going to be fun to deal with.

But, I offer to you that at any conference we are both at, I will make sure you get to whatever class you are going to with whatever help you need. People want (and probably need) you there.

So there's my offer. (I missed LTUE too.) And if you need help getting around at Storymakers, I will do what I can to give it and I'm sure I am not alone in this.

Rebecca Talley said...

You and your family will be in my prayers. My mother-in-law was diagnosed with this some years ago. She tried a lot of different drugs and therapies and found one that works for her. She is doing well and to look at her you wouldn't know she's dealing with it. There is hope and I will pray that your doctors will know how to best treat you.

Crystal Liechty said...
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Crystal Liechty said...

No advice from me. But I'll hold your bags or open the door for you anytime. If I'm lucky and Robison doesn't beat me to it.

The Damsel In Dis Dress said...

This is hard stuff. But I know you can tackle this and things will work out. I've admired your strength and I know it's what will get you through.

When I had cancer I tried to learn to laugh about it, hoping it would help. I couldn't always manage that, but I believe you will.

Inklings @ margothovley.com

Susan said...

I am so sorry. Hugs. And if you need me to carry anything or open any doors at Storymakers, I totally will. I'll follow you wherever you need while I'm there. Just let me know.

Agneta and David said...

Brave post!
Life is HARD! Yet oh.. so filled with joy! You have been and are a bright spot in mine! ;) Sending love and a world of good thoughts, XOX0

Jennifer Wolf said...

Hugs and prayers for you as you try to be brave. My husband was diagnosed with MS about this time last year, so we know about the iron skillet and unsolicited advice and miracle cures. Your Father in Heaven loves you and knows how hard this is, but He still has a plan for you. May your faith, family, humor, and strength sustain you!

Pam Williams said...

Good wishes and prayers for you. All your fans and friends need Sarah being Sarah, doing what Sarah does best. Hope you can find inspiration in that, and coping strategies from the medical world.

Kathi Oram Peterson said...

I"m so sorry to hear this. You"ll be in my thoughts and prayers.

Jenny Moore said...

I'm so sorry, Sarah. God bless you and your family.

Ashley Allen said...

Thoughts and prayers sent your way. May your doctors be guided in finding what is best for you. You can do it! You're amazing!

Rebecca said...
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Rebecca said...

What a strong and forthright post. I love how you put this into terms and I love how blunt you are about others opinions. I do feel they are given more then they are asked for. Thank you for continuing to share your talent with us. The first book I read by you was The Kiss of a Stranger and within a couple of weeks I had read the rest of your books listed on Goodreads, (minus an Unlikely Match which I am getting to) because they made me laugh and cry. I love your humor and your style and look forward to what is in store. Your laughter will surely help you on those dark days, not to mention the Lord. God bless!

Kate said...

So sorry. I have two sister in-laws with this and after some trial and error they have both been able to find the right kind and dose of medication. I pray you are as fortunate.

Cheri Chesley said...

You beautiful, wonderful lady! My heart is with you. Robison's right, it will give all of us a chance to be more chivalrous, or helpful, or whatever you want to call it.

It sounds to me you've got a bit of that Irish pride in you. It makes dealing with something like this particularly difficult. But you're strong. And you're very, very loved. I hope they find the combination of treatments that work for you, and I hope they find it soon.

Julie Coulter Bellon said...

So many people love and admire you, including me. I will be sending extra good thoughts and prayers your way that you'll have the strength to deal with whatever comes next.

Marion Jensen said...

I'm so sorry, Sarah. :( Thinking of you.

Kimberly Vanderhorst said...

There is no way for this not to be hard, but how awesome are you for trying to focus on the ways it can be better? Love your bravery and also love your admission of how hard it is. Sometimes we forget that it's okay to say that.

Kari Pike said...

Wow Sarah. I'm sorry you got smacked like that. RA is not a walk in the park. My 13 year-old (on Mar 17th!) granddaughter has p.(can't spell the first word) juvenile RA. It is a big challenge.

Ditto to what Rob and all the others said. Thank you for inspiring us with your courage to share your thoughts. You are and always will be one of my heroes. Thanks for being my friend. hugs and prayers and healing thoughts...

Chris Miller said...

Our circles don't overlap much, you and I, but I did notice you were not at that recent writer's conference--one of the places I get to bask in your giant shadow. You are now officially alloted my emergency stash of good vibes.

Medically speaking, I'm far too young to have the frequency and intensity of Gout that I do. It's not RA, not by a long shot, but there are times when I'm at the complete whimsy of joint pain and swelling.

All the best.

Marta O. Smith said...

Sarah, thank you for sharing this. RA is hereditary in my family and I have seen how frustrating it can be. Please allow people to help you. Just pretend you are the lady of the manor and we are all here to fetch and carry for you.

Aitch said...

Sarah,

I was diagnosed with rheumatoid arthritis when I was a fresh-out-of-college 21 year old. Similar to you, I was terrified about how this terrible disease would affect my life and plans and goals. Now, more than 12 years later, I can honestly say that in my experience it will get better. Even if your symptoms don’t get better, your ability to cope with them will improve. Your ability to deal with the doctors and the medications and the uncertainty and the well-meaning (but mostly terrible) advice will expand and things will start to get a little less scary. And, with the right combination of medications (which may take a while to find) your symptoms will likely improve too so that your life will get to a new normal that isn’t so bad.

I am truly sorry that this is something you have to deal with and I hope that my words bring you a tiny bit of comfort that things won’t always be as bad as they seem right now.

Heather

Valerie Ipson said...

Yikes, Sarah! Take care of yourself! Your smile, humor, and writerly experience has blessed so many people. That means there are so many to return the favor when you need it!

Donna K. Weaver said...

*hugs* hubby is living with ths now. you're in my prayers.

Julianne Donaldson said...

I just want to say I'm sorry, and I'm here for you, and I will shuffle next to you at any conference you want to attend, so that you will not feel alone. Hold onto hope, okay?

Heather B. Moore said...

Argh! I thought you were just being quiet because you were spending your gigantic royalty check (kidding!). So glad you felt okay to tell everyone. We love you, and since I'm a faster runner than Rob, "I" will be opening your doors. He can carry your bag.

Melanie Jacobson said...

Oh, man. Sorry, Sarah.

J Scott Savage said...

Sarah,

Thanks so much for posting this. I, for one, would be thrilled to death to open doors for you, carry your bags, and knee cap the paparazzi. I'll even change my name to Guido. If there is anything at all Jen and I can do to make your life easier, let us know. You know, other than those boiled duck bills we gave you to wear in a small bag around your neck.

Kate Fluckiger said...

I'm praying for you, Sarah. You are one brave lady.

earwaxtasteslikecrayons said...

Sometimes life *is* hard.

I'm sorry it's hard for you right now.

Hugs and feel-good Tiffany vibes coming your way--

Wendy Jones

Katrina L. Lantz said...

Hugs and prayers for you and your wonderful family! This sucks. You are already using it to uplift others by writing about this so honestly. God bless you, Sarah Eden.

Donna Hatch said...

Oh, Sarah, I can't possibly say anything more loving or clever or helpful that hasn't already been said, but know that I love and admire you and will keep you and your family in my prayers.
And I'll be the first in line to help you (and fight off everyone else who wants to help you too) if you do decide you want to brave a writers conference or retreat or anything in the future.

Heidi Grange said...

Oh, goodness. What a heart-breaking diagnosis. You will be in my thoughts and prayers. As for your writing, I will love whatever you can do, however much or little that might be.

Big Toe Mom said...

oh my goodness. that stinketh! sending love and hugs to you. I hope you find wonderful doctors who will work with you.

M. R. Buttars said...

That stinks! Me and my entire family are pulling for you. Your books have been a great source of laughter and fun in all our lives. We are praying for you, and wish you the best of luck with finding the right treatment.
Best wishes,
The Kent Sisters

Book Worm said...

When life gives you lemons, make lemonade and have a lemonade stand. You have the right amount of sweetness to make it good. ;)

You will be in my prayers.

eopoulson@gmail.com said...

About 25 years ago I worked with a woman who had been diagnosed many years earlier with RA. She was my ideal for dealing with life's really tough problems: she quilted, she typed, she found a way to accomplish every single thing that was important to her. I'm sure you'll follow in her footsteps in accomplishing every single thing that is important to you.

Best wishes and please continue your good work.

Ru said...

I am so sorry to hear this. It sounds like you've got a great perspective though. Wish you the best.

Cassidee Hackley said...

Sarah! You are such an inspiration to me :) I love how you can always have such a good attitude about difficult situations. You and your family will definitely be in my prayers. Thanks for being my role model!

Elana Johnson said...

Oh, Sarah, I'm so sorry. I would open any door for you, anytime! *hugs*

amyegodfrey said...

Your piano teacher/friend-since-you-were-five is pulling for you!

Scarlet said...

Dear Mrs. Eden.
I have read your books and checked your blog for years now. Your books have provided an escape into one of my favorite time periods, regency!I love your wit and sense of humor. Although I have not met you I feel like I know you from reading your blogs and your wonderful books. I can not open doors for you at writer conferences since I am a reader not a writer :) but I do have great Faith in a loving Father in Heaven. I will pray for you and your family and send kind thoughts your way. I too believe in the power of good thoughts and positive energy. Thank you for sharing your talents with the world. I look forward to reading of your journey and any of your wonderful stories as well.
May you find peace in your journey through this.
best wishes

Scarlet Bushman

ReflectionsbyCindy said...

So sorry, Sarah. Hugs and prayers sent your way, to you and your family.

Rachel said...

I'm so sorry, I will be praying for you!! You're still amazing :)

Carrie Bell said...

What a yoke to carry! Please, please remember that no matter where the road leads, you have me (and many others, I'm sure) cheering you on. The diagnoses does not change that you are a talented, wonderful woman.

You're in my prayers. Really.

Sarah Crumpton said...

You can do hard things! :)

G.G. Vandagriff said...

I'm just starting with regular arthritis at 65, so I can't even imagine being your age and facing the kind of indescribable pain you are facing. I literally ache for you. You are my writing mentor, though I am so much older. Please find a way to keep writing. We need your stories, your sweetness, and your strength. I'm not real good at making lemonade, either.
Love, GG

Jewel said...

Oh, Sarah, I've been wondering if there were some hard things going on, and I'm so sad that this has happened to you--RA is just plain awful. But I know you and your Irish spunk, and I know that you will have exactly the strength you need to bear this burden with grace and dignity. I wish there were something I could do--be your typist, come clean for you, or help you out, but just know that I'm thinking of and praying for you!!
By the way, my e-mail has changed, but let me know if you want help or input on your books, and I'll get it to you...I miss getting to help with your books!!
I sure love you, and I know that you have a Heavenly Father who does, as well.
*hugs*

Oakley said...

You are in my prayers!

Sue robbins said...

Have you ever heard of Dr. Bradleys emotion code? I used it when my mom was having similer symptoms with her leg and it definatly helped. I love you.

Nancy Campbell Allen said...

Cute, sweet Sarah. Love and hugs to you and many, many prayers. <3

Jennie said...

I'm sorry you have to go through this. My daughter faced this problem in her early twenties so I know how hard it is. She couldn't even drive because she couldn't hold the steering wheel. There is hope though. It may take awhile to find what works for you and because some medications have serious side effects you may have to try several before you find the right ones. A combination of a good doctor, your own will and intelligence, and the faith of all your friends and supporters will see you through this. You have what it takes to conquer mountains, even this one.

Tanya Parker Mills said...

Bless your heart, Sarah. You definitely have my prayers, my hopes, and all my best wishes.

CTW said...

Really, really sorry. Sometimes life sucks. I really hope that things get better for you.

Rose said...

I'm sorry you hurt. I truly believe that with time it will be better. I've seen it. Don't lose hope. My prayers are with you. :)

Charissa said...

What a brave post. My heart goes out to you, and I won't give you advice, cures, or ugly rants (I don't have any even if I wanted to)...but I do wish you the best in this trial. The two most Christ-like people I've met in this life have also been the most pain-riddled and crippled. It seems that in our extremities we come to know Him best.

Kristen said...

I am so sorry to hear this! Many prayers being sent your way!

Mary said...

I was touched by your post and wish the best for you. Mary

Chrissy said...

You are my favorite author. My heart broke for you while reading this. You will be in my prayers. Sending hugs and love your way.

Veray said...

This happened to my little sister a couple of years ago. She is still so young (37 when diagnosed) and it has been a long road. The doctors finally hit upon the right medication for her and she is coping much better. Being a hair dresser her job involves her hands just as yours does. I hope you are able to find what helps you too, so you can continue to write your wonderful books for us to read. Our prayers are with you. :)

Stephanie Abney said...

Thank you for sharing this with all of us, Sarah. There is great power in sharing such things and having others pray for you. You are a marvel. Best wishes for just the right stuff to keep you going for a very long time. Hope we get to see you at Storymakers - lots of people will be ready and willing to do anything you might need. Hope you are up to it because your presence would be sorely missed. Take care, cute, sweet lady.

Michelle said...

I'm a new fan of yours and this is my first time on your blog. Wow--no fun! (RA, not your blog) So sorry and will pray for you. And I will be reading "Drops of Gold" during the kids swimming lessons today... Love your books!

LoriJ said...

Sarah - I just finished reading your book "Drops of Gold" (loved it!) and found this blog. This was the first book of yours I have read, and I look forward to reading more!

I also have RA. I was diagnosed about 5 years ago. If you saw me in the store (are you in UT?), you wouldn't know I have it. A great doctor is the reason! Keep doing what you feel is right for you. You CAN live with RA.

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