Thursday, July 11, 2013

One Day at a Time

Seven months have passed since Rheumatoid Arthritis and I became painfully well acquainted. Those seven months have brought moments of agony, hope, weariness, determination. I have become a person of greater compassion and patience. I have also, in a lot of ways, been beaten down by this disease.

Days are longer and harder. Every morning brings a physical fight with my own body just to move. Only after two hours of struggle can I get around without tremendous difficult. Even then, the entire day involves pain, stiffness, swollen joints, fevers. I've spent hours and hours at doctors' visits, doing blood work, trying to navigate the complicated world of insurance, keeping track of more medications than I ever thought I'd be taking. And even with all that, the RA is growing more debilitating during this difficult period of searching for the right combination of treatments. We are getting closer. I am confident we are. But I'm tired. I'm tired in every imaginable way.

I have days when writing is my lifeline, a necessary escape from all of this.
I have days when I simply can't do it. The pain is too much. The exhaustion is too much.
I have days when the joy of putting stories out in the world for people to enjoy is worth all the work.
I have days when the worries and strains and weight of being a writer make me wonder, in light of all that I am dealing with, if I wouldn't be better off opting for early retirement.

I have days when I feel like supermom, managing to get dinner on the table and keep the house clean.
I have days when I not only can't do it all, I can't do any of it. The house falls apart. The children are scavenging for food. And I feel like RA is undermining everything.
I have days when I feel optimistic, like I've totally got this beat.
I have days when I fall apart.

For all that, I'm pulling through. I'm taking it one day at a time. The outpouring of kindness and support has been astounding. Chronic pain has a shockingly isolating effect on a person. The reminder that I am not alone or forgotten helps in those really difficult moments. More than once I've had a really tough day and an email or a tweet or a Facebook message will come through from someone who has taken the time to simply say they enjoyed one of my books, or were thinking of me, or just to tell me they care. So, thank you.

I'm nowhere close to giving up. I fully intend to look back a year or two from now and be amazed at how much better I'm doing. It's simply going to take time.

19 comments:

Sherril said...

Sarah, RA can be debilitating physically and emotionally. I've been diagnosed for 13 years. At one point while changing BIG GUN meds I felt like rigor mortis has set in while I was still alive. The dance around medications is also frustrating and time consuming. Hold on, there are some great things out there that can help, but it does take time to find out what works for you.

Sarah M Eden said...

Thank you for the encouragement, Sherril. I have spoke to many others who are also enduring RA and have been so grateful for the reassurance that there is light at the end of this tunnel. I've just gotta keep moving toward it.

Cheri Chesley said...

I probably think about you 50 times more than I say anything on FB or your blog. I should get better at that. I do wonder how you are doing and hope that you are finding a treatment/medication plan that will work for you.

Thanks for the update. I'm cheering for you.

Mindy said...

I am constantly thinking of and praying for you. I put your name in the temple as well. Take care!

Heather Moore said...

You're amazing... that's all I can really say...

G.G. Vandagriff said...

I keep your name in the temple, and pray for you all the time. I, too, have a debilitating illness that will never leave and what you say about isolation is absolutely true. The ups and downs are very difficult, but like you, most of the time my writing is my lifeline. For some reason, known only to God, we grow best in a climate of resistance. As writers and as people. Know that I think of you all the time. Your last book was the best.

Sandra said...

I was diagnosed almost 10 years ago. It was a struggle until we found the medication that worked wonders for me. I am now weaning off of that down from 1injection weekly to 1injection every 4-6 weeks. It was an even longer and harder process to figure out the combination of diet and exercise that made it possible to do that. However there are still days that I just can't do what I want and I don't remember a day without some kind of pain. Keep on, work with your doctor and you will figure it out. And I am always willing to talk or just be a listening ear.

Erin Anderson said...

Sarah, I sure have enjoyed your novels! I appreciate that there is an author that can write a romance novel, make it amazing, and keep the junk out of it too! I'm sorry about your pain though. I have helped some people with the disease you are fighting though. If you are open to natural health and fighting this through diet, I may be able to help? I hope this isn't too awkward for you or any of your other readers. My only intention is to help if you would like.

Andrea said...

I eagerly anticipate each of your novels, and hope that you will keep writing for years to come! My heart aches for all the pain you are dealing with. I hope you are able to get relief soon!

Julie Daines said...

I'm so sorry you have to deal with such a painful and frustrating illness. It really doesn't seem fair. Hugs and prayers.

I'm very excited to read Glimmer of Hope, it's next up on my reading list. I've LOVED all your books. You are a talented writer.

Agneta and David said...

True... you are amazing! There is little else I can say other than that I admire your spirit<3

Agneta and David said...
This comment has been removed by the author.
Taffy said...

Every day with RA is hard. It's amazing the compassion that comes with RA as you watch older neighbors and friends have a hard time getting out of a chair or walking upstairs. And they, like you, just take it one day, one hour, at a time. You're doing good! And thank you for sharing your journey.

Chris & Christina Taylor said...

I think you are incredible -and I appreciate you writing about this struggle in this blog. I can't imagine going through what you do, and yet, your attitude alone shows your strength. Not to sound too cliche but you are one of my absolute FAVORITE authors, and I am grateful for your wonderful stories. They warm my heart, and provide a wonderful escape from my daily struggles and trials -so thank you for that gift. Hang in there! I'll keep you in my prayers

Michael-Ann McAfee said...

You are a gifted writer. I've read all your books. I read Glimmer of Hope and thorougly enjoyed it. I hope you will find the glimmer of hope you need in your fight gainst RA and that the glimmer will grow into ever-expanding painless periods of time. Motherhood and housewifehood are challenging for all women (don't doubt that!), especially for women who also have employment elsewhere, but approaching them from a position of pain is overwhelming and heartwrenching. I hope you are blessed with many helping hands and wise enough to let them serve you. Hang in there and God bless you.

Tressa S said...

It just makes me so sad, reading this. You are amazing! I will keep sending prayers your way.

I just got Longing for Home in the mail today. I didn't realize it was so many pages when I read the ARC on my kindle, which must tell me how well it was written. Thank you for still writing. I know it's tough and if you take breaks or quit for a while - I mean really your family and taking care of you are the most important things, I think we all understand. Really, we'll read whatever you write whenever it gets written. :)

Tressa @ Tressa's Wishful Endings

Helen said...

Lovely Sarah, my heart goes out to you and I understand your pain. I understand what it feels like to get up in the morning not because your no longer tired but because its to painful to lay there any longer. I know how exhausting it is just to do simple tasks, and how frustrating it is when those tasks are hard to do. I understand how hard it is to trust and have faith in our Loving Father in Heaven when you can see your body change in a way you didn't think would happen for many many years. I have a favorite quote from Elder Richard G Scott, he says," This life is an experience in profound trust- trust in Jesus Christ, in his teachings, trust in our capacity as led by the Holy Ghost to obey those teachings for happiness now and for a purposeful, supremely happy eternal existence. To trust means to obey willingly without knowing the end from the beginning. To produce fruit, your trust in the Lord must be more powerful and enduring than your confidence in your own personal feelings and experience... As you trut Him, exercise faith in Him, He will help you. "
As hard as RA is their is some comfort in knowing that RA is not the result of sin or of choices that we have made, but it come from our Father as a teaching, refining, exalting tool for our salvation. God did not give us this to see if we could do it, but for us to see that through Him we can do it, and help our brothers nd sisters along the way, such is all trials. I have been strengthened through your example!
Anyway, I hope that you can find something to help slow and stop your RA it took me years! Your in my thoughts and prayers, I feel I know you, and would love to meet you someday and hug your neck!
BTW I love your books, you are amazingly talented, keep up the great work!
xxxx
Helen
p.s. if I've misspelled words sorry I'm typing with one finger... I fell and fractured both elbows a few weeks ago... Sigh... More character building opportunities...

Heidi said...

Sarah, you are very loved and appreciated! I'm sorry this battle is still raging for you. Chronic pain is incredibly draining in every way. I've sometimes wondered if God gave me the desire to write because He knew it would help me cope. I'm glad you have that escape, too.

Remember that the Savior knows how you feel and you can get through this by relying on His love. You also have two Heavenly Parents who are rooting heart and soul for you.

With love,
Heidi

Ms C. said...

Sarah, I thank you for your book, "Drops of Gold". A friend had recommended it to me without telling me much about it. She had done this with other books, so I didn't think much about it.

My husband took his life almost two years ago and as I read your book my heart took a huge leap in the healing process.

I had been in counseling for almost a year and made great strides. But, reading your book did wonders for my soul. It gave me hope that someone could love me again and that I could love again too. Thank you.

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