Life with RA: Like a Bowl of Jelly Bellies

“For everything there is a season … a time to cry and a time to laugh, a time to grieve and a time to dance.” – Ecclesiastes 3:1, 4

I’ll be honest. I had no intention of writing this post. It is day three of #RABlog Week and the prompt is “Explain Your RA.”

It’s not that I don’t want to tell you what it’s like to have rheumatoid arthritis. It’s that it varies so much with everyone, I’ve hesitated to focus on my particular case without adding the same type of disclaimer you see on weight loss program ads: “Results not typical. Actual experience will vary.”

Oh yeah, and the other thing. RA isn’t my whole life. I have a job, a husband and a daughter, and this week, I have a million deadlines. I didn’t want to write today, because I needed to get back to those priorities. But then it hit. What was supposed to be my “high priority” day began this morning with a mini-migraine and an RA flare. So since I’m just sitting on my couch, waiting for my body to cooperate and feel better so that I can get to “work” work, I may as well go ahead and do this.

Read back to my first blog entry in September 2014 and you’ll see how it began. Then pick up again in April 2015, and you’ll read about what it’s been like at its worst, in the aftermath of having shoulder surgery. Both times in my life are when I really didn’t know that RA was the problem. I just hurt and didn’t know why. Those were milestones in my life with RA: First, accepting that I had the disease; and second, accepting that I needed real treatment for it.

Both times were difficult, because they were scary. Research rheumatoid disease, and you’ll find photos of severely deformed hands, stories of people in crippling pain, and drug descriptions that make you seriously wonder if they’re worth the risk, since they all seem to come with warnings about “serious infections” and cancer. I can honestly say that coming to terms with having RA has been one of the most frightening experiences of my life. But it’s also been one of the most faith building.

The truth is, living with RA (for me) is like closing your eyes, putting your hand in a bowl of Jelly Belly jelly beans, picking one out at random, and popping it in your mouth. As anyone who has tried that particular brand of jelly beans will understand, I’m using it as my example for a reason. This isn’t your ordinary brand of jelly beans. You’re not taking your pick of lemon, orange and cherry. Nope. Jelly Belly makes over 50 flavors, from enticing Tangerine to the more unusual Buttered Popcorn. Recently, they introduced a new line that includes Barf, Canned Dog Food, and Stinky Socks. On any given day with RA, you just don't know what you'll get: delicious or disgusting.

Three months ago, prior to getting on my DMARD (Disease Modifying Anti Rheumatic Drug) Plaquenil (which only comes with a warning about potential eye damage), I couldn’t hang up clothes in my closet without searing pain in my shoulder and my knee swelled up so bad that I couldn’t walk across the room.

Last weekend, I went kayaking.

Yesterday, in amongst a full work day, I ran errands, did grocery shopping, brought snacks for my daughter’s Girl Scouts troop, and even ran on a treadmill (first time in six months – yay!).

But then here we are this morning, and I woke up with my fingers stiff and swollen, my head hurting, and a familiar ache in my elbow joints. As my body “warms up” over the next couple of hours, I’ll begin feeling better. But I know that I better take it easy and manage my stress, or the days ahead will be worse. This is a minor flare and I want to keep it that way.

If there’s one thing I can tell you about living with RA, it’s what I can’t live without: God, my family and my community.

Knowing that I have unconditional love from my heavenly Father, even on days when I can’t seem to do anything of earthly value due to my illness, is critical to my wellbeing. He is the source of my spiritual healing and my hope for physical healing as well.

Having that same type of love and support from my family makes the world of difference too. When I get sweet hugs from my daughter and my husband understands when I’m having a rough time - helping out or giving me grace for things left undone – I find the strength to carry on, with a sense of gratitude that makes me want to give more when I’m able.

Last but not least, community is there to remind me that I’m not in this alone. Those who achieve much inspire me to keep pushing through, while those struggling inspire me to write with messages of hope and an encouraging word. My fellow bloggers may share their medical insights, or simply remind me that they too are living this mixed bag of burdens and blessings.

If you struggle with RA or another life altering disease, I hope my story will help you know you’re not alone. If you are healthy, then perhaps this will give you a little insight into others in your life with “invisible illnesses” like RA. For more articles on RA and finding faith in the midst of pain, visit the Spring Sight home page. God bless!

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Life with RA: Like a Bowl of Jelly Bellies originally appeared on Spring Sight blog, by Linda W. Perkins. It is one of a series of posts specifically about Rheumatoid Arthritis, as part of #RABlog Week. 

Get even more encouragement by following me on Facebook, Pinterest, and Twitter. Many of Spring Sight's posts can also be found each week on #EncourageMeLinkup (Mondays),  #IntentionalTuesday,  #RaRaLinkUp (Tuesdays), and  Testimony Tuesday.

To Fight or Surrender? Winning the Battle of Fatigue

This is the second of a week-long series of posts related specifically to life with rheumatoid arthritis, as a part of #RABlog Week. If you have RA and are new to this site, please know that it is spiritually oriented, written from a Christian perspective, and here for your encouragement.  If you do not have RA, please keep reading to learn more about this disease or check out my other posts. You can also follow me on Facebook or Twitter.

“But those who wait on the LORD Shall renew their strength; they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint.” – Isaiah 40:31 (NKJV)

“I’m so sorry. I just don’t think I can manage it.”

Every time I heard those words coming out of my mouth, I felt guiltier and guiltier.

Ben and I had only been married a short time and we were looking forward to a lifetime of outdoor activities, which we had enjoyed throughout our dating relationship. But more and more, I felt too exhausted to even make it through an ordinary day, much less a hike through the woods or a kayaking outing. It just wasn’t happening.

Morning after morning, I dragged myself out of bed, feeling like I had been run over by a mac truck. I ached everywhere, my hands and feet swollen with inflammation, and I would smile dimly at my beaux, as if in another world. I desperately wanted to go back to bed, but didn’t want to disappoint. As I sat on the couch, fingers slowly unfreezing with the warmth of the cup of coffee in my hands, I pondered all that was on my to-do-list. Would I…could I…make it to lunch without a nap? Could I muster up the energy to make the bed or do the dishes? I really wasn’t sure. Day after day, the answer was the same. The fatigue was too much. I came up short every time.

As bad as it was, the physical fatigue was not the most crippling. No, it was the mental and emotional fatigue – the feeling of just being defeated by it all. I was weary of the fight, depressed at the disparity between who I was just a few months beforehand and who I was today, and fearful of a future that seemed so much less than I had hoped for. And for everything I could no longer do – or at least do with any consistency – I felt less and less attractive to my husband. Despite his assurances to the contrary, all I could think about was how much I must be letting him down.

It took almost a year of this type of debilitating fatigue, combined with a rough surgery recovery, before I surrendered to the idea of taking a DMARD (disease-modifying anti-rheumatic drug) for my RA. Since my father had passed away from cancer just a month before my diagnosis, and he had suffered for several years with the side effects of chemo, I was terrified of the pharmaceutical treatment options that lay before me. I was never so grateful as when my rheumatologist told me I could begin with Plaquenil, the drug with the least amount of side effects, and even more so when it worked to ease my symptoms.

I would love to say that modern medicine was all I needed to beat my RA-related fatigue, but that would not be true. I've needed more, in order to get back on my feet and attain the level of energy I had before. The drugs may be slowly restoring my ability to move my body; but I know that only with God will I have the ability to truly soar.

I have learned that the true enemy in the fight against fatigue is that voice in my head that says “You can’t do this.” Fortunately, I have God’s Word that says in Philippians 4:13 that I can. It is knowing I can do all things through Him that gives me the strength I need to carry on. And it is by truly accepting His unconditional love, receiving it and focusing on it each day, that I overcome the adversary that says “With RA, you’re not enough.” Because I know that with God, I am. My strategy for winning the battle of fatigue? Fighting the enemy within, while surrendering to my ultimate Friend. 

My war with fatigue is not over. It is a day-to-day struggle, taken as it comes. But at least now I have a plan. I will go to the One who says, “Come to me, you who are burdened, and I will give you rest.” And with the help of little naps, a little love and a little laughter, I will be patient with myself and my body too, remembering I need only do what I can do. I am all I need to be today.

How do you address fatigue in your life? Do you let physical fatigue beat you down emotionally, or do you allow negative thinking to zap you of the energy you need to get through the day? Where do you go to lift your spirits and be revived?

To Fight or Surrender? Winning the Battle of Fatigue originally appeared on Spring Sight blog, by Linda W. Perkins. It is one of a series of posts specifically about Rheumatoid Arthritis, as part of #RABlog Week. 

Subscribe to Spring Sight by Email Your privacy is very important. Your email address will not be shared with any 3rd parties. 



Click here for more posts. Get even more encouragement by following me on Facebook, Pinterest, and Twitter. Many of Spring Sight's posts can also be found each week on #EncourageMeLinkup (Mondays),  #IntentionalTuesday,  #RaRaLinkUp (Tuesdays), and  Testimony Tuesday.

Learning to Love My Mornings

“The Lord’s love never ends. His mercies never stop. They are new every morning.” – Lamentations 3:22-23 (ICB)

Note to reader: This is the first of a week-long series of posts related specifically to life with rheumatoid arthritis, as Spring Sight is one of the blogs featured in #RABlog Week. If you have RA and are new to this site, please know that it is spiritually oriented, from a Christian perspective, and here for your encouragement. If you do not have RA, this is a great week to learn more about what it’s like to live with the disease. I hope you will keep coming back! You can also follow me on Facebook or Twitter.

The truth is, I never was a morning person. I found out the hard way, when I went to college. Before that, I was your average kid, forced into a schedule engineered by parents and school administrators. Of course I didn’t stay up late! My parents were strict about bedtimes – the earlier, the better. And when the school bus picks you up at 7 a.m., well, you don’t have much choice. You get up!

So when I got the dorm application that asked “Are you a morning or a night person?” I had to think hard. Hmmm … I knew there were a number of times I would beg my parents to let me go to bed and get up early to finish the dishes, do homework, or whatever else I was too tired to do after a long day. So I assumed I was a morning person.

Unfortunately, for me and my first college roommate, I assumed wrong. Put a real morning person with a natural night owl in one teeny tiny dorm room, and you learn quickly why universities ask that question.

“Turn off that d--- music!” my roommate would growl, each time I dared to turn on the stereo past 9 p.m. I thought it was playing very softly, but nothing was soft enough for her.

The tables would turn the next morning. I glared at the woman whose alarm clock had interrupted my slumber at 5 a.m. and had already turned on the TV, watching some talk show as she sipped Dr. Pepper, her morning beverage of choice. How the heck can anyone be fully awake at this time of day?? I thought.

Little did I know that many years later, I would find out exactly what it was to be fully awake at 5 a.m. It wasn’t out of desire, however. It was due to RA.

The very first thing I ever knew about rheumatoid arthritis was its effect on mornings. I had begun to see less and less of a good friend, and had inquired of her husband as to where she had been. “Oh, didn’t you know? She was diagnosed with rheumatoid arthritis. It’s been really hard on her. It can take her two hours just to get out of bed in the morning,” he said.

Wow. Two hours to get out of bed? I couldn’t imagine. While not a super-late night owl, due to the reality of having a job and a child to send to school, I was the kind of woman who would do whatever it took to not get up any earlier than necessary. I always asked the hairdresser for the “minimal maintenance” style and had learned to put on makeup at the speed of light. Within just 30 minutes, I could be up, showered and dressed, with a quick bowl of cereal in my stomach and a cup of coffee in my to-go mug, ready to head out the door. The thought of having to get up two hours earlier to get ready was just unfathomable to me. Way, way too painful to think about. My poor friend.

I had no idea that I too would be learning to adjust to an “extended morning routine” due to my own diagnosis of RA, just a few years later.

When I first developed rheumatoid arthritis, I didn’t choose to wake up at 4 or 5 a.m. The disease itself woke me up. A deeply intense, dull ache permeated my hands each time I tried to open or close them, whether as an involuntary response to a dream or as I tried to pull up my bed covers. I didn’t know what was wrong with them. They just hurt. Bad. I couldn’t go back to sleep. Not like this. But when I got up, my feet hurt too, just to stand on the hardwood floor. So I laid in bed, tears running down my cheeks as I tried to rub the pain away.

Eventually, I would hobble across to the bathroom and down to the kitchen, where I sought comfort from my coffee pot and sat, now wide awake, at my breakfast room table. What now? I thought. What can I do of any value at this time of the morning, without waking up anyone else in the house?

With limited energy – I was fully awake but still tired – and still aching in my joints, I wasn’t ready to hit the ground running but felt restless and frustrated. I can’t just sit here! I thought. And then I looked across the room, and saw it: the book I had been saying I would read every day, if only I could find the time. Well, now I had the time, and I was full out of excuses. The Word of God – the Bible – called to me, like a friend wanting to share her intimate secrets. She was there. Would I accept her invitation?

It’s been almost two years since I began waking up early due to RA. Back then, it was disease that woke me up. Today, it’s desire. Desire to spend time with the One who loves me most. Desire to spend time in His Word. For I have found that the Scriptures are true: His mercies are new every morning. It is that time that gives me strength for today, hope for better tomorrows, and joy for the journey. I have learned to take the time I need for my hands and feet – and today, my knees and shoulders too – to “wake up” and feel better, and use it to my advantage. There is something about healing the soul that does something for the body too.

I will never be a morning person, as long as there are late nights to enjoy. But today, whatever time my mornings begin, I no longer look at them with dread. Yes, depending on the day, there may be pain. But there is also joy, and on that I can depend, for I know the One who will bring it and He never fails to deliver. It comes wrapped in a nice little package, like a gift I get to open every day, with a tag that reads Love. 

If you have RA, how do you handle your pain in the morning? Do you rely on warm heating pads or cool towels to soothe your joints? Where do you go to soothe your soul? 

Learning to Love My Mornings originally appeared on Spring Sight blog, by Linda W. Perkins. It is one of a series of posts specifically about Rheumatoid Arthritis, as part of #RABlog Week. 

Subscribe to Spring Sight by Email Your privacy is very important. Your email address will not be shared with any 3rd parties. 

Click here for more posts. Get even more encouragement by following me on Facebook, Pinterest, and Twitter. Many of Spring Sight's posts can also be found each week on #EncourageMeLinkup,  #IntentionalTuesday,  #RaRaLinkUp, and  Testimony Tuesday.

Healer of My Soul

“Heal me, LORD, and I will be healed; save me and I will be saved, for you are the one I praise.” – Jeremiah 17:14 (NIV)

It’s a beautiful day outside. The sunshine is filtering through my window, brightening up my breakfast room with its soft light; and if I open the kitchen door, I can feel a cool breeze dancing across my cheeks.

After a long, hot summer when even the well-watered plants on my back porch wilted under what seemed like never-ending scorching heat, I’m ready for days like this.

Well, kind of. Sorta. Ok, I’m ready for weather like this, but not days like this. Why? Because on this glorious sunshiny day, I’m stuck inside, on the couch, nestled up to a box of tissues, sucking on throat lozenges … sick.

Unlike some illnesses that come on suddenly, like a bomb has just dropped, I got fair warning on this one. It’s one of the mixed blessings and curses of having RA. The moment my immune system notices even the smallest change, it kicks into overdrive, draining me of all energy and delivering a not-so-nice package of “malaise” onto my body’s proverbial doorstep. So while my upper respiratory infection didn’t fully express itself until Saturday, I was well into feeling cruddy at least a day or two before. So when I go to the doctor today, I will be able to say in all truthfulness, that I have been “sick” for about five days now.

The problem with upper respiratory infections – aka “colds” – is that there really is no “cure” for them. Throat lozenges, decongestants, antihistamines and cough syrup are great for symptom relief, but that’s about it.

My outer symptoms may go away, but the disease will still be lurking under the surface. 

Even antibiotics, while curing subsequent bacterial infections, are useless against the original virus that caused the illness to begin with. It just has to run its course. So today, even though a very competent doctor will examine me and will no doubt make me feel better with the medicines she prescribes, she will not be able to actually heal me.

I find it interesting that in the Bible, when Jeremiah is crying out to the Lord, he says, “Oh Lord, if you heal me, I will truly be healed…” (Jer. 17:14a NLT). The same verse in another translation reads, “You alone can heal me…” Clearly, Jeremiah knows something we often forget: Complete healing comes only from the Lord.

Medicine may or may not heal our bodies, but we are never truly healed until God has healed our souls.

Having an incurable illness – whether it’s as minor as a cold or as serious as an autoimmune disease like RA – can be both miserable and frustrating. No one likes to be told there’s no way to be made completely well.

But just because there’s no cure doesn’t mean there’s no hope.

Just like I know that the bad cold I’m suffering from right now won’t last forever, the Bible is clear that one day, God will wipe all tears from our eyes and there will be no more death, suffering, crying, or pain. (Revelation 21:4 CEV) We have that as our promise, when we turn our lives over to Him.

Better yet, when we go to God, we know we can find comfort that transcends our bodily pain. Philippians 4:6-7 says when we stop worrying, and start praying, telling God our needs and trusting Him for His answers, then we will receive the peace that passes all understanding. And we do not need to wait until some undefined time in the future to receive it. It is available to us today.

Even in the midst of physical pain or discomfort, we can find healing for our souls. And then, only then, will we find the ability to praise Him in all circumstances.

It is a beautiful day outside. The sunshine is filtering through my window, brightening up my breakfast room with its soft light; and even while sitting on my couch, nestled up to my box of tissues, I can feel the soft touch of the Holy Spirit dancing across my heart, filling me with peace and joy. My body may be sick, but it is well with my soul.

How do you feel today? Is your body sick or well? How is your soul? May you find true healing in the Lord.

Click here to listen to John Michael Talbot’s song “Healer of My Soul.” 

Healer of My Soul originally appeared on Spring Sight blog, by Linda W. Perkins. Click here for more and to get posts delivered to you via email. Get even more encouragement by following me on Facebook, Pinterest, and Twitter. 

Subscribe to Spring Sight by Email Your privacy is very important. Your email address will not be shared with any 3rd parties. 

Please visit me and other Christian bloggers Grace Esedeke on #EncourageMeLinkup, Crystal Storms on #IntentionalTuesday, Kelly Balarie on #RaRaLinkUp, and Holly Barrett on Testimony Tuesday.

Also make sure to come back to Spring Sight next week for a series of blogs about Rheumatoid Arthritis, as I join other RA bloggers in the first annual #RABlog Week.