Monday, September 21, 2015

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.

Friday, September 18, 2015

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." 

Saturday, October 29, 2011

"Ain't no place for sissies"...

I know I've mentioned this before, but one of my mother's favorite adages was a quote from Bette Davis {of all people}: Old age ain't no place for sissies.

Old age or not, living with chronic illness "ain't no place for sissies".  My mother knew that, very well. She lived with RA for decades longer than I have. What I need to remember is that the course auto-immune diseases take is as unique and individual as those of us who are afflicted.

I wish mother were still alive so I could tell her how I now understand why she grimaced if one of the children accidentally hit her hand and when we lifted her in and out of her wheelchair. She seldom complained, but I remember a season when dad had to dress her, and how much she loved the lounge chair he bought her years later - the one with vibrations and heat controls where I knew I could find her every morning.

Negligent to maintain this RA journal, many of the details between my last post and this one have escaped me. That's not necessarily a bad thing. I don't like to dwell on the details. Acknowledge them and then move on is what I think.

So where am I today? Better than I was in July, not as good as a year ago. For now, I seem to be on a "one step forward and two steps back" track. Today is typical. I've been up since 4 am with excruciating pain in both wrists. A situation now complicated by a return of elevated liver enzymes that limits me to only one prescription pain medication, even though XS Tylenol or aspirin works just as well, if not better. 

I'm still on leflunonomide (Avara) for now, but I don't think it's effective. As I continue to wean off prednisone (I'm currently alternating 5mg and 7.5mg daily), my cough, facial rash, extreme fatigue and severe joint pains are returning. 

I had a large infected cyst on my neck left open to drain for a week before having it removed entirely. The surgeon was concerned about my ability to heal while on prednisone, but she was pleased with how well I not only healed, but avoided infection. So was I.

I'm scheduled for a repeat C-T scan of my lungs, pulmonary function tests, and a sonogram of my thyroid in early December, as well as regularly scheduled blood work, followed by an appointment with the pulmonologist and then my rheumatologist to see where we go from here. I might try to see my primary physician in November just to keep a closer eye on my liver enzymes. I'm not convinced that tylenol is the culprit.

After the first of the year and we evaluate where I am with the RA, I hope to see the orthopedic surgeon. I need to know if the biggest problem with my knees is RA or OA. If it's OA, then I'll probably need surgery if I'm otherwise strong enough. 

If you are one of the handful of friends who follow my RA journey, please know that I don't dwell on any of this. Life's too short to be self-absorbed. There's too much loving and living to do. Let's just link our hearts and arms as we journey together toward home. 

Wednesday, August 24, 2011

Poco a poco...

Once upon a time, I was a registered nurse and the nurse administrator for a hemodialysis center in a rural community. Because of my past experience in hemodialysis and administration in another community, I'd been recruited by the medical director to hire and train staff and get the dialysis center off the ground. From renovating a building near the hospital to the first day we began out-patient treatments, it was a slow and tedious process. "Poco a poco. Little by little," the medical director often commented during those early organizational days when nothing seemed to happen fast enough.

It's the perfect description for the progress I'm making these days, as well...but it's progress. My liver enzymes are back to normal and two weeks ago I started a new medication - leflunonomide. So far, so good. When I increased the dosage from 1/2 to 1 tablet daily after ten days as prescribed, I was also supposed to decrease the prednisone back down to 3 5-mg tablets - but I don't think I'm ready to do that yet. Soon.

Until this morning, Louis was still getting me up at 4:00am and the routine has been the same, except I've noticed over the past week that it has been less and less painful, and I've been able to stop using the walker earlier and earlier each day. I went to church this past Sunday, and yesterday morning I didn't need the walker, at all. This morning, I only needed it for a short time, when I got up by myself at 4:30 after Louis had already gone to work.  

Progress. Poco a poco - but progress.

Friday, August 5, 2011

Starting over...

The past couple of weeks, with only slight variations, my days have looked something like this:

4:00 - 4:30 am: the first most difficult challenge - Louis helps me get out of bed so I can make my way with a walker to a chair in the living room. It's a slow and painful process. My feet, ankles, knees, hands, wrists, shoulders and sometimes elbows and hips are swollen stiff and inflammed, making it beyond difficult to bear weight on any of my joints. Prednisone promises relief, but it must be taken with food and the ulcer medication must be taken an hour before eating. So I take the ulcer medication and something for pain, and Louis helps me arrange heating pads around the most painful joints, a pillow under my left knee (which I cannot straighten) and other comfort measures before he leaves for work.

5:30 am: the second most difficult challenge - I gather up enough courage to get up out of the living room chair by myself and walk (with the walker) to the kitchen to eat a little something and take the rest of my meds, including prednisone. The pain med usually hasn't kicked in yet and it's a miserable task. Sliding or dragging, rather than walking, is a better description for how I continue to move at that hour.

7:00 am: Though it's still painful, the pain meds have dulled the sharpest edges by now and I need to get up and move. I'll need to use the walker for 1-3 more hours, but the thought of standing and moving no longer makes me want to cry.

By 7:30 am, I've been awake more than 3 hours and determined to get dressed. Before RA I would have been content to stay in PJ's all day, if given the opportunity, but it's important to my mental health to get dressed as soon as I can and not look like the invalid I obviously am these days.

Some time mid-morning I'm able to put the walker away for the day, but I'm still not able to move without pain and limping, and most chores and the activities of daily living are obstacles to overcome.

The best time of day is between 2:00 - 7:00 pm, but I have to be careful to not overdo. Monday I had to leave the house for lab work and to run a few errands in Ft. Myers. Emily did most of the shopping while I waited in the car, but I paid severely for what little I did.

Thursday I thought I'd try walking down to the creek with my camera. I'm going stir-crazy here in the house and the creek isn't that far from the house - 150 feet at the most. After I came inside I took a shower. My legs and ankles hurt so bad that I didn't think I could stand long enough to rinse the soap off. I got out of the shower, sat down and cried.

That's when I made the decision to call the rheumatologist this morning and not wait for my appointment on Monday. I'm so glad I did. I doubted my ability to get through the weekend on my present medication regime. The prednisone dosage was increased from 15 to 20mg, and after just one day, I'm already feeling better and more optimistic that my doctors will be able to prescribe a treatment plan that will not damage my liver or lungs.

Saturday, January 22, 2011

So I don't forget...

This post is for me. "Remembering" has never been my gift (!). If I don't write it down, I simply won't remember.

A variety of extra circumstances (lack of sleep, assignment deadline pressures, weather changes) is making it a little difficult for me to evaluate how well I tolerated this first dose of methotrexate. I will try anyway. I'm interested to see if there are patterns that I can tweak to make positive changes in the future.

Except for a little more RA pain, I ended the day feeling very good about how well I tolerated the methotrexate. (The pain is not likely related at all.) Increasing the dose, as ordered, by 50% (from 4 to 6 tablets) next week may produce different results, but I'm very encouraged about how well it's gone so far.

I was exhausted by early evening last night and in bed hours before my normal bedtime, but a busy day Thursday (Precious Life board meeting in the morning, multiple medical appointments in Ft. Meyers and shopping in the afternoon) and lack of sleep that night are likely the culprit.

When I went to bed last night, my right hand, feet and shoulders were hurting and though I slept well for the most part, I woke several times during the night with increasing pain in my knees making it difficult to bend or straighten my legs, so I was mentally prepared for the difficulty I had getting out of bed this morning.

Two hours and three prednisone later, I'm improving, but still  hurting. My biggest frustration with this is in not being able to get outside and walk on this delightfully cool morning. The sunshine keeps teasing me - popping in and out. I fully expect to be outside soon. Lord willing.

I'm sitting on the back porch looking out towards the bird feeders and the pond and my backyard swing. Our home on Pollywog Creek is surrounded by communities of immigrants and farm workers, and for the most part, they are hispanic. Music, loud and joyful, is drifting over from somewhere across the creek. There are drums and guitars, singing and clapping. I listen carefully. I don't recognize the tune or understand the language, but there is a sweetness to the music.

We often hear party music coming from that direction at night, but this is different - and it's mid-morning. Then I hear it. "Hallelujah"  "Hallelujah"

I'm reminded of the chorus lyrics of one of my favorite Kathy Troccoli song...
Oh praise Him all His mighty works
There is no language where you can't be heard
Your song goes out to all the earth
Hallelujah, hallelujah, hallelujah
And I love that Hallelujah is the language of God's people in English and in Spanish.

Hallelujah indeed!!!

Friday, January 21, 2011

A beginning...

Today's the day (technically last night) that I begin treating this disease with methotrexate, rather than treating just the symptoms with prednisone.

I told my friend Joyce earlier this week that I'm truly not worried about any of this. God has given me a steady measure of peace - an assurance of His unending grace and provisions for my needs. As silly as it may seem, the only thing that has produced any anxiety in me has been the possibility of nausea. I don't do nausea well.

From all my research (and the doctor's recommendation), the methotrexate seems to cause less nausea if taken just before bedtime, and that is exactly what I did.

So far, so good. Nothing I can't manage. I have a headache and  feel like I'm in a bit of a fog, but I can feel that way without taking methotrexate.

I don't have much of an appetite, but even that is not a bad thing. The prednisone has kept me in a perpetual state of starving. A day or two without an appetite might be a welcomed balance.

I have nothing to complain about. Truly. I'm writing this from my back porch as painted buntings, red-headed woodpeckers and white-winged dove feast at the feeders under the barren limbs of the sweet-gum trees. Thunder rumbles in the distance and drops of rain fall here and there, bouncing off the roof and the dry mulch around the already blooming azaleas.

Work calls to me from the laundry room and kitchen. Yogurt needs to be spooned into jars and I must focus soon on completing the organizer for our taxes. But for now, this leisure time is a grace gift.