Adjusting Your Expectations

#RDBlog Week 2019

Expectations. We all have them. We have hopes and dreams, as well as plans for turning them into reality. But what happens when you get hit with a chronic, incurable illness like rheumatoid disease? It is so easy to feel shattered, as if all your hopes and dreams have flown right out the window.

Five years ago, I went to my dermatologist to find a treatment for rosacea and ended up with a diagnosis of rheumatoid arthritis. Boy, did I not see that coming! Well, okay, the truth is that I absolutely saw it coming...for at least six months before I got the results of my blood work. My hands hurt every night and I hobbled across the floor each morning, struggling with each painful step. I knew something was not right, but I definitely did not want to hear those two dreaded initials: RA.

My life, five years into having RA, is definitely different than it was before. It's better.

I cried when I got the news. And when I read the material the doctor handed me about treatments and the long-term ramifications of RA, I cried even more. What about the plans I had for my life? What about the hopes and dreams I shared with my husband of just four months? I thought that life as I knew it was over. And you know what? It was. My life today is not what it was then. It's better.

If you didn't catch what I just said, listen up, because it's the truth: My life, five years after my rheumatoid disease diagnosis, is better than it was. Is it perfect and pain-free? No, it is not. Am I in remission? Nope.

The simple difference between then and now is that I have adjusted my expectations.

Prior to developing RA, I was working on obtaining and maintaining a "beach body." I was working out hard and dieting to get down to my ideal body. It was hard, but I was doing it. What I couldn't figure out, however, was why I was so very, very tired every day and it was getting worse. Little did I know that the fatigue of RA was beginning to set in. I felt like a wuss. I was stressed out trying to get my body to measure up to what I thought I should be capable of. And when I couldn't keep up the pace and the weight began to creep back on, I felt like a failure.

Today, I weigh 30 pounds more than I did when I achieved my "ideal" weight. Do I love that? No, of course I don't! Here's the deal, though. I have learned over the past five years that my identity is not tied to a number. It is not tied to the weight on the scale or the size of my clothes. I am ME and I have come to know myself in a deeper way since having RA and I have come to like myself for who I am. That is a gift that I would not have if it were not for living with my disease.

It would not be fair to skip over the struggles to get here, and to talk about the other expectations I have had to adjust. With regards to my diet and exercise program, I have learned there are things I can and can't do with RA, and there are things I can and can't control.

I CAN overcome my tendency to be a couch potato in order to be healthier. I can get up and walk around my neighborhood or the mall, and I can take the stairs instead of the elevator. I can limit myself to a 65-calorie mini chocolate bar as an evening treat and skip the dessert tray or a full-size package of candy. Those are things I can control...and they can make a difference. I could not do much aerobic activity after shoulder surgery, however, and being couch-bound for even just six weeks packed on some pounds. So did taking Prednisone. Even my migraine medication had weight gain as a side effect. And those "beach body" workouts I used to do? All those do now is to put me in a flare that will set me back even more. Can I still kayak, hike, and exercise? You bet. But "easy does it" has become my mantra. Look back in my blog and you'll see I even hiked the Grand Canyon a couple of years ago! I just knew to adjust my expectations and to not push myself beyond my limits.

I can't control everything RA does to my body, and so I have found my best way to deal with it is to accept the best version of myself, whatever that looks like.

Accepting what you can and cannot control is part of life. Even if I didn't have RA, I can't control everything and everyone around me. My daughter is a teenager now. Need I say more? Perhaps that's why the oldest saying in the book is this: "Want to make God laugh? Tell him your plans!" None of us can say for certain what our lives will look like in five, ten or twenty years ... or heck, even next week! So for me, I have found the best way to live is one day at a time.

As far as my body goes, I am not where I used to be, before I got hit with RA. But I am nowhere near where I feared I might be, either. My medications have been effective, with few side effects, and I am still mobile. If I ever am disabled by RA, though, I will be prepared. I think about accessibility in our current home and the one we eventually plan to build. I occasionally think about learning voice recognition software, in case my hands begin to give me more trouble.

I have learned to listen to my body so I don't end up in a flare. And those naps I used to feel like a "wuss" if I took? Today, I know that when my body says it's time to rest, I make no apologies. With RA, self care is of utmost importance, including the need to say "no" to doing too much.

Adjusting expectations isn't just an RA thing. It's a life skill. We all change, from the day we are born until the day we die. The way to deal with it is through acceptance. How do I accept the changes I don't like? That is where I have to reach beyond the physical to the spiritual for answers. My faith is what helps me navigate the roller coaster of life with RA. You see, this is what God tells me:

"For I know the plans I have for you, says the Lord, plans to prosper you and not to harm you; plans to give you a hope and a future." - Jeremiah 29:11

When I keep those words in mind, it is easier to adjust my day-to-day expectations. Because in the big picture, my expectation is that everything will work out just fine.

Peace, love and joy to you today.

Linda

Adjusting Your Expectations originally appeared on Spring Sight blog, by Linda W. Perkins. Click here for more posts. Get even more encouragement by following me on Facebook. 

Rheumatoid Disease - There is Hope!

#RDBlog Week 2018

It's that time of year again and, as usual, there is more I could write if only I had the time. So, I would like to kick off my participation by telling you what I want you to know most: there is hope!

I began this blog four years ago after I was diagnosed with rheumatoid disease (or rheumatoid arthritis, as many people know it). At that time, I had no hope. I took the information the doctor gave me and found a few sites online that gave me more knowledge about the disease, and became terrified. I had already begun the process of self-diagnosis, looking up what it meant to have a huge degree of pain in my hands at feet, especially early in the morning. When the doctor gave me the news, I was dismayed but not too surprised.

I'm not sure which scared me more - the disease itself or the medications to treat it. I had just lost my dad to lung cancer and saw him go through enormous pain and suffering being treated with chemotherapy, so the idea of taking methotrexate was terrifying. Biologics were just coming onto the market and while some people were having remarkable success with them, others were having life-threatening scares with reactions that left them in the hospital. Fortunately, I was able to put off taking any anti-rheumatic drugs for awhile, as I got used to the idea of having RA.

Six months after my diagnosis, I had shoulder surgery on a rotator cuff I had torn. When I wasn't recovering on schedule, the orthopedist told me I had to get on a DMARD (anti-rheumatic drug) or I would not do well, as he already found erosions in my shoulder that were caused by my RA. I went on Plaquenil (hydroxychloroquine). I have been on it ever since, with few if any side effects. It's not conclusive if it caused my psoriasis, yet another autoimmune disease, but it's mild enough that I have decided I can live with that as long as my RA is under control using the Plaquenil.

When I was first diagnosed, I cried because I thought my life outdoors with my husband would be over. I am here to tell you that it wasn't and it still isn't! Since that time, we have hiked in the Canadian Rockies, the Grand Canyon and Costa Rica. We still paddle the bayous and lakes in and around Texas, and I went whitewater kayaking (just Class 1-2) in Arkansas for the first time two years ago! We even joined the Banff Canoe Club when we were on vacation there.

Life with RA means you have to take care of yourself. You have to go at a slower pace, eating right and getting plenty of rest. Stress can really take its toll, and so you have to manage it. Exercise is important, but you have to pace yourself or you might throw yourself into a flare. I have learned that RA is the weirdest disease ever, too, because your pain can migrate all over your body! I have experienced RA symptoms not only in my hands and my feet, but also in my neck, knees, elbows, hips, jaw and even in my armpits! I have learned that ice packs, heat packs and anti-inflammatories are my friend. So are massages....mmmm, so good! And don't forget other people with RA as well. I couldn't have gotten through the past few years without the support of my friends, both old and new. RA has given me the gift of friendship with some wonderful people who are blogging about their disease as well. They inspire me to keep doing what I'm doing!

If you read this blog, you'll see that it is spiritually based. While those of us with RA can give you all the tips in the world, God can give you something more: peace. There is something about knowing He has everything under control, even when we can't see it or feel it, that gives me the ability to keep pushing through the hard days. I also find a lot of gratitude with Him by my side. Even though my life has changed, I never forget how truly blessed I am.

I will be writing more this week about specific topics chosen for this year's #RDBlog Week. In the meantime, feel free to click through old posts of mine, or head over to Pack Health, a support organization I write for. I shared some tips for living your best life with RA there for #RDBlog Week 2018.

I hope you come back here to visit and please leave your name and a comment so I can get to know you as well! Praying you will have a blessed day. ((Gentle hugs))

Peace, joy and love to you today,

Linda

Rheumatoid Disease - There is Hope! originally appeared on Spring Sight blog, by Linda W. Perkins. Click here for more posts. Get even more encouragement by following me on Facebook. 

Why Our Behavior Matters

"Do to others as you would have them do to you." - Luke 6:31

My husband and I made a new friend recently. His name is Tom. We met him at a New Year's Eve event and by every account, he was the life of the party. He was all smiles and laughter, and was not too proud to don the colorful beads and top hat that were provided to celebrants. We never would have guessed that he was a stage 4 lung cancer patient if his wife Darrelynn hadn't told us about his condition.

Tom had a bad reaction to a chemotherapy drug recently, which landed him in the hospital for several days and in a rehabilitation center for a couple of weeks afterwards. When I went to visit him, I could hardly believe that he had been at death's door just a few days beforehand. He was so cheery, he made me smile. He hugged on everyone who came into his room and gave a word of encouragement and appreciation to all of the nurses and aides. He gave all the credit for his joy to the Lord.

When Tom left the care center, Darrelynn posted a picture on Facebook of her and Tom with some of the people there. Below the group of smiling people, she described how they had become friends with many of the "wonderful staff" there.

If you didn't know Tom and Darrelynn, you might think he had been at a five-star nursing facility, they way they described their experience. I knew better. When I had googled the place before going to visit, I noted it's low rating and some people's complaints about the unfriendly staff. The truth is that it wasn't just the staff that made Tom's experience there so wonderful. It was Tom (and Darrelynn, whose spirit shines just as brightly).

If you grew up with siblings, or if you have more than one child, you know something about deflection, otherwise known as the blame game. Two kids get in a fight, and when each one shares their story, it inevitably is always the other one's fault. "She started it!" or "I wouldn't have, except for him..." is usually how the story starts. No one ever wants to admit their part in it.

There is an old saying "There are two sides to every story, and the truth is usually somewhere in the middle." I imagine that truism has been around for thousands of years, because Jesus neatly addressed the issue when he preached about loving others.

"Do to others as you would have them do to you," Jesus said. He followed up by saying that this is not just how we should treat our friends, but also our enemies. Yes, we are called to treat others - everyone - as we would want to be treated.

I could easily address this in the political realm, where lately civility has completely gone up in smoke. I will not, however, because this is not a blog to discuss political issues. Spring Sight is designed to bring encouragement and hope to those struggling with chronic illness. So how do we relate this to our situation?

I used Tom as an example for a reason. Tom was diagnosed with cancer over two years ago. At the time, he was given just a few weeks to live. Boy, has he surprised those doctors! But he hasn't been without suffering. He has had to live with his cancer, and the side effects of his treatments, every day.

While Tom could easily complain, he has chosen to keep his eyes on Jesus and to be grateful instead. Rather than lashing out in anger and pain, he has reached out to everyone in love. And you know what? As a result of the way he has treated others with love and kindness, that love and kindness gets poured right back into Tom.

The principle is this: It is hard to hate the one who loves you.

Have you ever been rushing through the grocery store, in a bad mood, and then someone smiles and opens the door for you or tells you to have a nice day? I don't know about you, but that one small gesture can cheer me right up.

Just as we who are ill rely on caregivers to be kind and sweet to us. so we must remember that it is easier to care for someone who shows gratitude and kindness as well. What comes around goes around, as they say. Perhaps that nurse isn't mean, but rather having problems at home. Will you pass judgment on her, or just focus on how kind you can be? Maybe that doctor who kept you waiting for an hour is overwhelmed with patients whose problems are bigger than he can fix in an instant. Your patience may be just the gift he needs right now.

Day in and day out, we have our ups and downs. Sometimes we feel fine and sometimes we are doing well to just put one foot in front of the other. It can be downright difficult to muster a smile at times. And yet, we have to keep going, as do our spouses and other caregivers we interact with.

If we truly want our days - and our relationships - to be better, then we need to remember what Jesus said. Be kind first. Treat others as you would want them to treat you. There's a good chance it will circle right back to you.

Peace, joy and love to you today -

Linda

Why Our Behavior Matters originally appeared on Spring Sight blog, by Linda W. Perkins. Click here for more posts. Get even more encouragement by following me on Facebook. 

Many of Spring Sight's posts can also be found each week on Crystal Storms' Thoughtful Thursday,  Kelly Balarie's #RaRaLinkUp, Holly Barrett's Testimony Tuesday, Holley Gerth's Coffee for Your Heart, and Woman to Woman's Word Filled Wednesday. I also link up often with Jennifer Dukes Lee and Dawn at Journeys in Grace, as well as with Lori Schumaker.

Embracing Joy

"Don't be dejected and sad, for the joy of the Lord is your strength!" - Nehemiah 8:10

Don't let my smile fool you; I am not a naturally happy person.

Neither a sunny optimist nor a depressed pessimist, I am a realist. Unfortunately, reality doesn't often match up with my highest hopes and dreams. And knowing that fact, as evidenced too many times in my life, makes it hard for me to stay up in the clouds of excitement for very long.

When I was first diagnosed with rheumatoid arthritis (RA), I was relieved to hear that my case was considered mild. After reading up on my disease, however, I quickly learned that it was a progressive disease and couldn't help but begin thinking about "what ifs." What if it gets worse? What if the medicines make me sick or cause me to lose my hair? What if they don't work at all? What if, what if, what if.

It is no wonder that Philippians 4:6 became my favorite Bible verse very early on...by the age of about nine, actually. "Do not worry about anything..." it begins. Yeah right, said Little Miss Worry Wart. "Instead pray about everything." Okay, I will try that, I thought. And so I did.

Losing the Labels, While Embracing Our Identity

"Accept one another, then, just as Christ accepted you, in order to bring praise to God." - Romans 15:7 (NIV)

I looked over to the right of where I was sitting on the equestrian center's metal bleachers, as we waited for our trail ride to begin. My daughter's Bible study leader was talking to several other women, but I couldn't hear them. Instead, they were communicating with their hands. 

I felt a little left out and jealous that I couldn't be a part of the conversation, because I didn't know sign language, but at the same time I admired them. The very fact they were here at the women's retreat told me that their deafness wasn't going to hold them back from experiencing all that God had for them, and it wasn't going to stop them from having relationships with hearing people, either. 

I asked them, through the interpreter, if I could have a picture with them. I said I wanted to send it to my daughter, whose favorite show is Switched at Birth, a television series about a deaf community. They smiled and obliged, but it got me thinking.

These women had come to the conference with an interpreter, like anyone who spoke another language would, and yet we kept referring to them as members of our church's deaf community. Don't get me wrong, the references were good and kind and filled with gratitude for having these special ladies at the retreat. But I wondered for a moment, "What if they don't like being labeled as the deaf community?"

Healing from Within: Turning Away from Toxicity

"Set your mind on things above, not on earthly things." - Colossians 3:2

What if I were to tell you that there is a way to start healing your body immediately, without any drugs or special diets? Would you try it?

There isn’t anyone I know, especially within the chronic illness community, who wouldn't say yes. We are all longing for something to make us feel better.

The burden of chronic illness is not apparent to those outside of our world. We may look fine on the outside, and may even be able to perform our daily activities as if we were not ill. But those of us who have lived with illness day after day, year after year, know the burdens we carry. They are not light. There is a heaviness in our hearts, knowing that we will never get well.

As our symptoms come and go, and the bottles of medicines stack up on our nightstands, we are reminded that we are not like other people. We hesitate to make plans in advance, for we don’t know how we will feel that day. We cancel lunches with friends we love because they’ve come down with a bad cold, and if we catch it, that may take us down a path we can’t recover from.

We watch what we eat, we do the exercises that are prescribed, we get stuck with needles on a regular basis, and we go to countless doctor visits. Sometimes it feels like all we have time for is tending to our health. It’s draining.

What I’ve recently realized, however, is that there’s something that can make us feel even worse: toxic thinking. That can take a variety of forms, from self-pity to anger at family members who just don’t “get” that you’re really sick. One particular topic that has been top-of-mind and become quite toxic for me, however, is politics. It’s something I’ve always enjoyed discussing and debating, but lately, not so much. And while you may not think it’s relevant to this blog, read on.

Time to Get Back on That Horse?

“I have the strength for everything through him who empowers me.”
Philippians 4:13 NABRE

We had just arrived at the dude ranch for our family reunion and were checking in when the desk clerk, a friendly woman with a broad smile and long blonde hair flowing out from under her bedazzled black cowboy hat, asked the inevitable question: “Are you interested in riding today?”

The next trail ride was in 45 minutes and, given that it was 3:00 in the afternoon on a hot summer day in west Texas, no one had signed up yet. There were plenty of spots open. Was I interested? Yes. Would I be able to do it? That was the question.

The last time I had ridden a horse was seven months before, and to call it a pleasant experience would have been a stretch. My left knee, one of the joints I’ve had trouble with since the onset of my rheumatoid arthritis (RA), was not happy. Truthfully, it felt as if it were being twisted right off my leg. No matter how hard I tried to get comfortable, I couldn’t, and I pretty much decided that perhaps my riding days were over.

While I remember the physical pain I was in during that trail ride, what sticks in my mind the most was the disappointment I felt. With the way my knee was hurting, I was not planning to ever ride again, which made me sad.

I had been around horses my entire life, from the time my daddy sat me up on top of “Kate,” the old mare at my grandfather’s farm, when I was about three. My uncle was a Texas rancher, married to a professional cowgirl, and when I was in high school in England, my sister and I spent a lot of time at the nearby stables where we learned to jump. Even though riding had been only an occasional pastime for me as an adult, it was still something I loved to do when I had a chance.

So here I was, at a decision point. Could I accept the ride seven months beforehand as my last time on horseback or should I try again? Would I take a chance and get back on a horse, or would I sit it out?

God is Listening

"But in my distress I cried out to the Lord; yes, I prayed to my God for help.

He heard me from his sanctuary; my cry to him reached his ears." - Psalm 18:6 (NLT)

As I look across this room today, I am sick of being sick. After battling an upper respiratory infection for weeks, with a cough that just won’t go away, on top of a painful shoulder and a sore foot, I am tired of hurting.

This is an unexpected feeling, because before Christmas, I was feeling pretty good. I felt like I was pretty much in remission with my RA, and I began a diet, hoping to get my pre-RA figure back.

Alas, with rheumatoid arthritis – or life in general, I guess - nothing is ever a straight line.

That is where trust comes in. Trust in myself? Ha, I wish. I’ve been down that road before, thinking that if I just try harder or work smarter, it will all work out. Unfortunately, I can’t control every facet of my life, the least of which is my chronic illness.

I don’t like being told I’m not in control. I am a linear thinker, which means I want to know that if I am in control of the input, then I can control the output. That isn’t real life, though, is it? There are so many variables, only a few of which I am really in control of.

I am fortunate to have found a good program, Pack Health, about a year ago, which set me on the path to taking better care of myself. I’ve been able to apply the strategies to my life and as a result, I feel much better overall. I’ve even begun writing blog pieces for them, so that others may benefit from my experience. That said, no program can prevent all the curveballs that autoimmune diseases can throw at us.

For me, the most frustrating aspect of living with RA is the inability to heal. I thought I was never going to recover from my shoulder surgery two years ago. I did, but not without a lot of hard work, some extra time, and only with the help of a DMARD (disease modifying anti-rheumatic drug). I hadn’t needed to be on a DMARD before, but my doctor made it clear I would never fully recover the use of my shoulder without reducing the inflammation in my body. Wow, what a difference!

Yet here I am again, with the other shoulder’s torn rotator cuff…and despite months of physical therapy, it still hurts. And while I was just feeling good about a daily walk through the neighborhood with my husband, along comes a constant pain in the bottom of my foot. In between visits to my physical therapist, my rheumatologist and my primary care physician (for that pesky sinus infection), I might actually make it to the podiatrist. Joy…another new medical experience!

Not to sound like negative Nellie, but sometimes you just have to get real. You know what I mean?

I tell you why I’m sharing all of my frustrations here. It’s so you know that I understand where you’re at. I know exactly how it feels to be fed up. Or maybe we should call it “beat up” because sometimes that’s more like it, isn’t it? The pain is more than just physical; it’s emotional too. I don’t know about you, but there are days I just want to curl up in bed, throw the covers over my head, and quit.

You know what keeps me going, though? It’s that still, small voice that says “I’m not finished yet.”

Yes, I believe it when God says in Jeremiah 29:11 that He has a plan for my life and it’s a good one. I believe Him when He says He doesn’t start something He isn’t planning to finish. And somehow, I don’t think He’s done with me yet.

There are enough times in the Bible that God says “Do not fear…I will go with you” to let me know that even right now, while I’m ready to give up, He is with me, cheering me on. Sometimes, it’s seeing a news clip that makes me realize I’m really not so bad off after all, compared with them, anyway. At other times, it’s my daughter, who makes me smile and yet also makes me see how much she needs me. And when I look back over my life, I can see where God really has been there during the hard times, carrying me until I could get back on my feet and walk again.

I know that when I close my eyes and pray, my prayers are heard. He hears my cries. I know, because at some point, the pain stops – even if just for a few moments – and I can feel His peace and His presence.

Whatever you are struggling with today, whether it is chronic illness or something else, you can be confident in a God who loves you and cares for you. He hears your cries too and says, through the words of Jesus, “Come to me, lay down your burdens, and I will give you rest.”

Peace, love and joy to you today.

Linda

God is Listening originally appeared on Spring Sight blog, by Linda W. Perkins. Click here for more posts. Get even more encouragement by following me on Facebook and Twitter. 

Many of Spring Sight's posts can also be found each week on Crystal Storms' Thoughtful Thursday,  Kelly Balarie's #RaRaLinkUp, Holly Barrett's Testimony Tuesday, Holley Gerth's Coffee for Your Heart, and Woman to Woman's Word Filled Wednesday. I also link up often with Jennifer Dukes Lee and Dawn at Journeys in Grace, as well as with Lori Schumaker.

Subscribe to Spring Sight (make sure to reply to the confirmation email to complete your subscription)

And the Winner is...

Congratulations to Deb Constien, who won a copy of The Case for Hope book by Lee Strobel in my recent giveaway! Thank you to all who participated by sharing my post with your friends on Facebook and Twitter, and for subscribing to Spring Sight. This was my first giveaway, but I have a few more in mind for 2017, so please continue to let people know about Spring Sight! As you know, this site exists for one sole purpose: to give hope to people who are hurting. 

As I sit here in my living room, looking at my lit Christmas tree, I am reminded of all the gifts I have received this year - love and laughter, hugs and kisses, sunny days and starry nights, cool breezes and warm fires. I truly believe that the best gifts in life are free. We receive some of them from family and friends, and some from the world around us.

So often, when we are diagnosed with a chronic illness, we may think we will no longer receive the gifts life has to offer. And yet, my few years with rheumatoid arthritis has taught me that's not true. Living with RA and my other chronic illnesses, I have learned that I now have other gifts to enjoy.

Where There is Hope {GIVEAWAY}

“The LORD delights in those who fear him, who put their hope in his unfailing love.” 

– Psalm 147:11 (NIV)

Have you ever thought about how precious the gift of hope is? How lost we feel when we don’t have it? If you have ever been hopeless, you know exactly what I mean. I remember many years ago, when I had wandered away from God and made a mess of my life, feeling hopeless. I didn’t know where to turn or what to do. But in desperation, I reached up to Him and He made me whole again. It wasn’t overnight. It was a process. But as I trusted His love for me, I began to see it becoming a reality.

In Government We Trust?

“Some trust in chariots, and some in horses, but we trust in the name of the Lord our God.” – Psalm 20:7 NIV

It’s been almost a week since the United States presidential election and protests directed at President-elect Donald Trump have become a daily occurrence. The LGBT community, Muslims and Hispanic immigrants are expressing concern over Trump’s campaign rhetoric that brought with it support from white supremacist, far-right wing groups that have become more vocal in recent days. Many are also outraged at his comments to and about women.

We in the chronic illness community have responded as well. Many didn’t appreciate the apparent mocking by Trump of a disabled man at one of his rallies. Many others have rightfully been concerned about healthcare. Most of us with chronic illnesses applauded Obamacare for its mandated coverage of pre-existing conditions, and yet, insurance rates under Obamacare have skyrocketed – especially for those in the middle class, without subsidies – making it a mixed bag of blessings and curses, to be sure.

As I sit in the middle of it all, I have watched both sides of the debate. I have seen the anger of my friends with small businesses and the self-employed, who were genuinely hurt by Obamacare. I have also seen the fear of those disabled by rheumatoid arthritis and other chronic illnesses, who desperately need and rely on government-sponsored healthcare.

Who will help us?

Familial Guilt: Is It My Fault? Is It Theirs?

"Rabbi, who sinned, this man or his parents, that he would be born blind?" – John 9:2

I received a call from a dear family friend the other day. I hadn’t heard from her in a while and she needed to talk. After we got through a few minutes of small talk, she said she had to share something important with me: her teenage daughter had been diagnosed with glaucoma.

It began with a straightforward statement and explanation of the doctor’s finding. But then, mid-sentence, she broke down in tears.

“I feel so awful!” she cried. “The doctor says it’s genetic. It’s my fault!”

I listened as my sweet friend poured out her heart to me, so broken that her own genetic makeup – including several chronic illnesses – had been passed down to the next generation.

Familial guilt is all too common…and all too painful.

Just ask the parents of a child who has gone astray. No matter what they may have done right, their question is always “Where did we go wrong?” We blame ourselves when our perfect little babies don’t stay so perfect.

#RABlog Week Day 5: Great Blog Posts I Have Read This Week

Just One Voice,

Singing in the darkness,

All it takes is One Voice,

Singing so they hear what's on your mind,

And when you look around you'll find

There's more than

One Voice

 - Barry Manilow - 

When I was 16 years old, I was a huge (or in the words of Donald Trump, lol, YUGE!) Barry Manilow fan. His songs somehow had the power to make me smile and cry at the same time. There was so much truth and so much raw emotion in them, and a few, like Copacabana, even had a little mystery and humor mixed in.

In the same way, #RABlog Week is one of my favorite times of the year because it brings together a whole lot of different stories and perspectives from rheumatoid arthritis (RA) patients from around the world. We smile as we hear a story we relate to. We cry when we read of someone’s pain and struggles that are even more difficult than our own. We get some good advice from others who have been there and done that. We are inspired and encouraged, and occasionally, we even find a little humor. As writers, we begin as just One Voice, but then learn there are a whole lot more of us, and together, we sing a beautiful chorus.

With almost 40 registered bloggers and more than 50 entries (so far), I haven’t had a chance to read all of this year’s blogs, but I can share with you a few I have enjoyed, as well as some collective wisdom I found threaded through all of them.

Caring for Yourself ... Wisely

"Use wisdom, and it will take care of you. Love wisdom, and it will keep you safe."
- Proverbs 4:6 (ICB)

Today is Day 2 of #RABlog Week and the topic is “Active vs Reactive Patients – We usually start as naïve and trusting patients, then at some point we realize we must take an active part in our own medical decisions…” 

Some of you may be reading this blog for the first time, as a result of #RA Blog Week, but there are others of you who are regular readers that don’t struggle with rheumatoid arthritis (RA), so I am going to talk today about something relevant to the #RABlog Week topic and to all of us: wisdom.

Perhaps there are a few exceptions out there, but for most of us, wisdom is not something we are born with. Take, in point, the story of ironing my doll clothes. 

I was about 10 years old and living in the tropics, and so wearing a bikini around the house wasn’t that unusual. My favorite doll Crissy, however, wanted to look a little fancier than I did. Alas, her dress was wrinkled. Being the daughter of a fashion queen (not just self-professed … my mother actually became a paid fashion and image consultant later in life), I knew that wearing wrinkled clothes just wouldn’t do. I told my mother, as she was walking out the door, that I would need to use the iron to take care of Crissy’s fashion crisis. 

Being the good mother she was, my mom told me to wait until she got back home. And being the (stubborn, disobedient) child I was, I completely ignored her instruction. Crissy’s dress was wrinkled. I was going to fix it. Period!

#RABlog Week Day 1: A Wedding, a Kayak and a Diagnosis

"RA Does Not Have to Define You" - Linda W. Perkins

Today is Day 1 of #RABlog Week and the topic is "Starting Stories." I've told my story several times here on Spring Sight and I wondered how I might tell it differently this time.

While I would never consider the diagnosis of a chronic, painful and incurable illness like rheumatoid arthritis to be amusing, there comes a point in your life when you have to find a way to laugh at even the worst of circumstances. After all, it's been said that laughter is good medicine for the soul, and I tend to agree.

So for today's post, I have created a title that's a take-off on the old "A Priest, a Rabbi and a Minister" joke. Yes, my starting story could be best described as "A Wedding, a Kayak and a Diagnosis." And fortunately for me, I was reminded by a fellow RA blogger's post that I have already told this story once before, in a multimedia format that's much more interesting than just a written story.

So without further ado, may I present "A Wedding, a Kayak and a Diagnosis" as told by me, and produced by Health Central. Read, listen and enjoy (spoiler alert: it has a good ending)!

My Story: A Wedding, a Kayak and a Diagnosis (link)

Check back here during the week for more RA-related posts, and go to the #RABlog Week topics page to find posts by other RA bloggers!

#RABlog Week Day 1: A Wedding, a Kayak and a Diagnosis originally appeared on Spring Sight blog, by Linda W. Perkins. 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 Crystal Storms' #IntentionalTuesday,  Kelly Balarie's #RaRaLinkUp, Holly Barrett's Testimony Tuesday, Arabah Joy's Grace & Truth, Holley Gerth's Coffee for Your Heart, and Woman to Woman's Word Filled Wednesday. This week, I am also linking up with Jennifer Dukes Lee and Dawn at Journeys in Grace, as well as with Lori Schumaker.

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Alone in the Wilderness

“But Jesus often withdrew to lonely places and prayed.” – Luke 5:16

My husband passed by my office door, on the way from the living room to the bedroom. A minute later, I glanced up and saw him standing there in the doorway, casually eating a banana and staring at me.

“Hey, what’s up?” I asked, trying not to sound annoyed.

“Oh nothing. Just thought I would see what you were up to,” he said with a sweet smile.

I smiled back at him, hoping he wouldn’t notice what was really going on inside me. I wanted him to leave me alone. I needed him to leave me alone. But I didn’t want to hurt his feelings. After all, it really wasn’t about him. It was me.

That stress you’re feeling isn’t just in your head; it affects your body too.

The truth was that inside, I was feeling like a pressure cooker. It was the beginning of fall, which meant piles of paperwork and calendar items were coming home from school with my daughter on almost a daily basis. On top of it, my work life was going crazy, with deadline upon deadline. Add in my various health issues, and I was frazzled.

Returning to Laughter

“So those who went off with heavy hearts will come home laughing, with armloads of blessing.” – Psalm 126:6

It’s been two years since I began this blog. Two years since my father died. Two years since I was diagnosed with rheumatoid arthritis (RA). Two years of many tears.

Two years ago, all I could see was pain. Emotional. Physical. Even spiritual, as I shook my fist at God and questioned “Why?” and “Why now?”

Being diagnosed with a chronic, progressive, incurable illness like RA has a way of derailing us emotionally. There we are, headed down the path of life, full of dreams of where we want to go, and suddenly, it all comes to a screeching halt.

I imagine it might be a little like being diagnosed with cancer. There’s something surreal about being told you have a disease that literally has the power to take your life (and yes, RA is more than just joint pain – it can, in fact, be deadly).

Unlike with cancer, however, where the biggest question is often “Can I beat this?” the question for people with autoimmune disorders – RA, lupus, multiple sclerosis, ulcerative colitis, psoriasis and more – is “Can I live with this?” There is no beating it. Even if they go into remission for a time, these are diseases you are stuck with for the rest of your life.

Grieving a diagnosis like this is much like grieving any other loss, though. There are five stages of grief: denial, anger, bargaining, depression … and eventually, acceptance. The key to living with chronic illness is not getting stuck in the first four.

When Saying Yes Means Saying No

"Love your neighbor as yourself." Matthew 19:19

“Come on, it will be fun!” she said. “We can drive up together!”

The invitation was tempting. I had already stepped out of my comfort zone, committing to a retreat that was still a couple of months away, all the while knowing that during this season of the year I am prone to chronic migraines. Nevertheless, I wanted to get to know a few of the women in my support group better, and it sounded like a fun way to do it.

The problem now, however, was that my new friend wanted to take it a step further. She wanted me to drive together to the retreat, almost two hours away, in one car. To many people, that – three or four women on a road trip together – would sound like a blast. But to me, it was terrifying.

How does one explain to someone what it’s like to live with the unpredictability of chronic illness? Even more so, living with multiple chronic illnesses? While some people will say “you don’t have to explain yourself,” I felt bad. I didn’t want to appear like I was rejecting my friend, or her offer. But I had been there before.

Finding Perfection in the Imperfect

How can a mere mortal presume to stand up to God?  How can an ordinary person pretend to be guiltless? Why, even the moon has its flaws, even the stars aren’t perfect in God’s eyes – Job 25:4-5

Two years ago, when I was diagnosed with rheumatoid arthritis, I would never have imagined myself saying the words that came out of my mouth last weekend.

“I am already living my dream, every day!”

I was standing in front of a table at a Christian writers conference, where an author and consultant was doing a prize drawing. All I had to do in order to enter was to write down my “big dream” on the paper covering the table.

I explained that I would have to think on it. As we chatted, I mentioned that I had several chronic illnesses, including RA. The consultant immediately jumped on it.

“Well, I’m sure that’s probably your big dream – to be healed!”

Even to my own surprise, I found myself replying, “Actually, no. That isn’t.”

If you’re a spoonie (someone who suffers from a chronic illness) like me, you’re probably sitting there with a look of disbelief on your face, as you read what I just wrote.

Releasing the Ghosts of the Past

“No, dear brothers and sisters, I have not achieved it, but I focus on this one thing: Forgetting the past and looking forward to what lies ahead.” Philippians 3:13 (NLT)

I hadn’t looked at my high school yearbooks in years. There was no need. That was then. This is now. I had moved on. Or so I thought.

As I reached up into the living room cabinet and took one down, I could feel the memories flooding back. Opening the cover, I could hear the spine crackling, as if the book was an ancient artifact, fragile from years of storage.

I felt a sense of dread come over me. Sure, there were some good times back then, but buried in that book were memories that haunted me right down to the core of my soul. These were not just a few bad moments. These were the kinds of ghosts that I had spent years trying to exorcise from my mind, the kinds that would keep me locked up in a prison of guilt and shame, remorse and regret.