Friday, October 4, 2019

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. 

Tuesday, September 25, 2018

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. 

Monday, July 2, 2018

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.




Thursday, January 18, 2018

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.