In the Battle::Encouragement from Amy's story...

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.

From my tender heart to yours,
Amy Smith

Amy describes herself as a hippie, a crunchy, save-the-planet type...a bibliophile, an autodidact, and an artist. She blogs at Considering Lilies.

He that hath been in the battle himself...

I've been reading Grace Stuart's Private World of Pain --- a 1953 London publication I borrowed through an inter-library loan. 

My interest in this rare publication was piqued not only by Stuart's experience with rheumatoid arthritis, but because it was written during the years my mother was living with RA without the benefits of the treatments available to me today.

In the introduction, Stuart divides her life with RA with the two phrases: "before cortisone" and "after cortisone," and credits the eventual availability of cortisone to her ability to "record from a subjective point of view such changes both physical and psychological as an addition of hormone (cortisone) might produce in me."

Though I long to be able to stop my need for prednisone, I've remained on various dosages since my diagnosis. I was impressed with the insight in Stuart's prophetic comment that cortisone would be a "signpost and not a destination" in the treatment of RA. 

Grace was fifty-two and had endured the pain and suffering of RA for over thirty years before the discovery of cortisone, and in chapter 1, she describes her anticipation and hope of receiving this drug that was only available in America at the time and not to her in England.

It was in 1948 that the chemist Edward Kendall, a Mayo Clinic researcher, discovered the anti-rheumatic properties of cortisone, and on September 21, 1948, the compound he labeled E (eventually renamed cortisone) became the first glucocorticoid to be administered to a patient with rheumatoid arthritis. One year later, cortisone was commercially produced in America by Merck & Company.

In the waiting for cortisone to reach her in England, Grace held onto hope for happier days.

"For our disease has meant not only damaged joints and tissues. It has meant that our whole bodies were sick and that depression fogged our minds." 

She also discussed the emotional pain of the unkind attention she'd received from others, and praises for those who had not been unkind in calling attention to her disabilities.

"It may possibly give them pleasure to know that they brought healing to the wounds they never caused."

I know all too well what she meant. I seldom talk (or write) about living with autoimmune diseases anymore because I dread the "unkind attention" --- though I don't think most people mean to be unkind, they're simply uninformed.

Thirty-five years ago I had emergency surgery for a perforated colon. Eventually I was diagnosed with crohns disease --- an autoimmune disease like RA. In fact, some of the same medications I take for RA today were prescribed for me years ago during crohns flares. I've since learned that it's common for those of us with one autoimmune disease to eventually be diagnosed with another one. When I was referred to a lung specialist early in my RA diagnosis, he wasn't sure if the damage to my lungs was from RA or crohns. It could be either one.

Long after I was diagnosed with crohns, unkind or disparaging comments were discouraging and confusing. Suggestions that I should have more faith, adopt a vegan diet (or any other diet along the wide spectrum of choices) and consider Doctor So-and-so who had discovered a miracle cure made me feel like a)I was somehow at fault for having this disease and b)I couldn't trust the medical community. I thought I'd learned during those years to be less thin-skinned, but in reality, crohns had gone into remission. Even when flares returned, they were short-lived and months apart, so I rarely brought them to anyone's attention.

It wasn't until I was diagnosed with RA that I once again faced wading through (and past) the suggestions from so many others for what I should do. This time I was older and wiser and I had my mother's experience with RA as reinforcement.

My mother was diagnosed with RA when she was in her 20's. One of my sons has crohns and Grave's disease. There's a good chance that genes are responsible, at least in part, for autoimmune diseases. The diseases often run in families. I watched my mother search for a cure by following as many suggestions for holistic and medical treatments that she could afford and none of them produced  any long-lasting or positive results.

All that to say that I, too, am grateful for those who "bring healing to the wounds they never cause." They bring healing by not suggesting a treatment or cure they heard or read about. I know that most people offer these suggestions because they care about us and want to see us well, so I've learned to say, "Thank you for sharing that with me." I don't know anyone with RA or any other autoimmune disease who hasn't been proactive. They have done the research and armed themselves with information on possible treatment options from a variety of resources --- from the natural and holistic to the pharmaceutical and surgical.

Those who bring healing do so by educating themselves in the same way. They look beyond their own bias (and we all have one) about health, wellness, and the medical and pharmaceutical community, and they consider that what might be the right decision for them, might not be good for others. They learn about autoimmune diseases and listen to the stories of those who live with the disease. They learn that autoimmune diseases can be invisible to those without it --- that we often appear to be much healthier than we really are --- and that many of us with a handicap placard are young and don't need a wheelchair (or maybe we do), but the ability and/or strength to navigate our environment can be just as challenging and difficult. There are many days when measuring our steps is important, and the added steps saved by parking in a handicap spot in a full parking lot might make the difference in whether we shop for groceries or not.

Those who bring healing listen to us when we could use a compassionate friend who understands that sometimes we just need to vent. We aren't looking for pity or sympathy. Neither are we wanting someone to fix us or do something --- though we'd likely, gladly welcome a gentle hug, some dark chocolate, and the promise to remember us in prayer.

Many of us who have lived with autoimmune diseases for a while have adjusted. We've learned how to manage pain on most days and to cope with an array of challenges. While recognizing our limitations, we enjoy a full, satisfying and grateful life. We know that there are many other diseases that are much worse, Autoimmune disease is not our identity, but it's an important part of our story, and sharing our stories --- our good days and our bad days --- is one way we can educate the public, as well as encourage others to know that we are not alone. It's a way of lettings those with RA or other autoimmune diseases know they're understood.

Several years ago I wrote about the importance of hearing the stories of those who live with similar struggles because...

"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

There will be stories of good days and bad days --- stories of "the combat that attends us." They are not a cry for pity or sympathy, but an opportunity to educate those who love and live with us, those whose battles are not autoimmune diseases, and more importantly, to encourage those among us who remain "in the battle."