Artwork by Amy Smith
"For no man can tell what in that combat attends us
but he that hath been in the battle himself"
~ John Bunyan, Pilgrim's Progress
Last week, I mentioned the importance of hearing stories from those who live with RA, and today I'm thrilled for Amy Smith to share a bit of hers. Amy is a young, smart, and beautiful wife, mother, and friend. She rarely complains. As we have shared freely with each other over the years, Amy's greatest concerns have never been about herself but what this disease means for others --- especially for her family, her children. For the purpose of this post, I asked her to be open and honest --- that it will encourage the rest of us to know we're not alone and that others understand.About three years ago, I was diagnosed with Rheumatoid Arthritis. I remember going online and using a Google search to learn more about it, and then beginning to cry as the enormity of the situation sunk in. I saw pictures of extremely deformed joints, red and swollen, and wondered how long it would be before I looked like that. The most difficult aspect of the disease for me personally to come to grips with was that there is no cure. This remains the biggest thing I struggle with.
I have been on increasingly strong medications since the first months. I started with Methotrexate (which is a Chemotherapy medication used in smaller doses for RA) and NSAIDS, and then progressed to Plaquenil, Humira, anti-depressants (though I am not clinically depressed) and a handful of other things before I started Xeljanz and narcotics to maintain pain control. The idea is to prevent future deformity by causing the disease to go into remission. I have not yet had this happen, but am hopeful.
During flares, I need help to do nearly everything. I have been so swollen and in such tremendous pain that I have not been able to squeeze a toothpaste tube or shampoo bottle, I have struggled to get dressed by myself, and I can not drive. I am incredibly grateful to have a supportive husband and family as a constant source of help. I am grateful for God, who keeps me from giving in completely to despair when times get particularly rough.
On my good days, I can do most things with minimal help and if you were to look at me with an untrained eye, you would not know I was sick. I always tease and say make up does miracles. The tricky part is that sometimes even on my bad days I don't look terribly sick. I could show you my hands and you would see they are swollen and red, but other than that, I look decent. Having an invisible illness is hard. People can't see your joints aching, feeling like they are on fire, or the slight fever you are running, making you feel like you have the flu all over.
Most people do not know how to care well for a friend or family member with chronic, long-term illnesses. We know how to make a few meals for a new mama or our neighbor with a cold, but then they are recovered and well enough to do it themselves, whereas people with RA can go months or years without experiencing remission and in need of help. The most precious gift in the world is a friend who might come over once or twice a week to fold some laundry, load some dishes, mop some floors or bring in some groceries. And I would never turn down a friend who would faithfully check in, send encouragement, and pray.
I believe God heals, and I believe He can heal me. I have prayed for that very thing over and over and over, and to be honest, I have even gotten angry with God because He hasn't. I have gone through periods where I have been incredibly introspective, seeking God and asking Him to reveal any unconfessed sin in my life. I have gone to healing services and been anointed with oil and prayed over. I have changed my diet, used essential oils and herbal therapies, bought hundreds and hundreds of dollars worth of supplements. I'm sad to say that none of these things have brought about the desired result.
I don't understand why God is allowing this in my life. I am thirty-six years old, and I have nine beautiful children, ranging in age from three to seventeen. I want, so very, very much, to be a good mother. I want to be a good wife too, and I feel like a burden when my husband has to come home from working all day to help me with the kids, with making dinner, with myself. I never imagined this for my life.
While I am mostly, usually positive about all of this, I certainly have my ups and downs. Some days, I just struggle to get out of bed. I get sick and tired of being sick and tired. I pray and feel like God is far away. Other times, I pick up my Bible and find some gem that lifts me right out of my funk and into a better place of heart, a place where I know, deep down, that ALL THINGS work for good for those who love God and are called according to His purposes. All things. Even this pain, this disability, this frustration, these limitations. Even RA.
If I had one thing to share at this point in my life, I think it would be to tell you to allow this (or any) disease to cause you to draw closer to the heart of God. I think sickness and weakness are fertile grounds for spiritual growth. And maybe just a wee reminder to take things one day at a time. Going much further than that tends to bring stress, anxiety and despair. It does for me, anyway.
Also? Everything counts, so celebrate little victories. Did you take a shower today? Gold star. Did you shave your legs? Two gold stars!! Did you get dressed? Eat a healthy meal? Take a restful nap? All gold stars!!! Remember to enjoy every second you get to snuggle that baby (or grand baby), to watch the kids act out their shenanigans, to ride in the car with the windows down and a cool breeze blowing through your hair. Stare at the handsome man you married. Flirt. Do whatever you can do with love and appreciate loveliness like never before.
And don't ever, ever, EVER lose hope.
Amy describes herself as a hippie, a crunchy, save-the-planet type...a bibliophile, an autodidact, and an artist. She blogs at Considering Lilies.