A Caregiver's Perspective: Living with Hypereosinophilic Syndrome

 

Seven years ago, I began this blog to share what it was like to live with rheumatoid arthritis, which I had just been diagnosed with, and to offer hope to those living with chronic illnesses. Since then, my condition has improved greatly. I still have to live with multiple chronic illnesses - RA, chronic migraines, hypothyroidism, psoriasis and seizure disorder - but all of them are, by in large, well managed by daily medication and lifestyle choices. I don't drink or smoke, I avoid certain foods that can trigger flares, I exercise regularly and I manage my stress. All of this, combined with my steadfast faith in God, has helped me to live a normal, happy life despite my health conditions. I am very fortunate in that most of the time, I don't even think about them!

What I have been thinking a lot about for the past year is a condition my daughter has been diagnosed with, which is called Hypereosinophilic Syndrome (HES). Yes, that's a mouthful, and it doesn't get any easier to spell or pronounce over time! It is also hard to describe to people, because it is a rare disease that can affect people in different ways. Like RA, it is an invisible illness, it is progressive, incurable and can be fatal if left untreated.  

Many people who have HES go undiagnosed for years. It is related to the allergic response system in the body, and yet not everyone who has allergies will develop HES. Eosinophil levels may be high in people with asthma and eczema, but usually not high enough to be considered hypereosinophilia. (The normal level of eosinophils is 0-500, eosinophilia is 500+ and hypereosinophilia is 1,500 +) My daughter J has had food and environmental allergies, eczema and asthma for most of her life, and yet it was not until she had a blood test for an unrelated infection that we discovered her eosinophils were over 1,500. Even then, the doctors cautiously waited and watched her numbers for a solid year before diagnosing her with HES. This is not a lightweight disease. The treatment options are long-term steroids, chemotherapy drugs, and biologics, the latter of which have only been available recently.

The biggest clue to J's condition was not her increasingly worsening eczema and asthma, but rather J's depleted energy level. A naturally gifted athlete, our daughter has participated in a number of sports, from competitive ice skating to volleyball, track and lacrosse. She was used to early morning practice sessions and games after school. It was unusual, then, for her to have to be dragged out of bed in the morning and for her then to be crawling back under the covers when she got home from school. When COVID-19 hit and the schools went online, my full-time job became trying to ensure that she stayed awake during classes, something I didn't always achieve. She went from lacrosse practice several times a week to not having the energy to even walk the dog.

In December of 2020, J's eosinophil level skyrocketed to 4,500. To make sure it wasn't a fluke, she was tested again a few weeks later and her numbers were over 3,200. In addition to all the regular blood tests we were already getting done, she was sent to a cardiologist, neurologist, and dermatologist for additional tests. After establishing that she did not have any underlying condition that could be causing her elevated eosinophils, she was diagnosed with idiopathic HES. Last month she began treatments with a biologic called Nucala.

While my daughter has always had various health conditions that required some degree of management, this past year has given me new insight into what it is to be a caregiver of someone with a serious chronic illness. Having RA, which also comes with fatigue, has given me an appreciation for her inability to participate in activities at the level she was used to. I knew she wasn't being lazy or insolent when she said she was too tired to do something; or when she went to church and Mother's Day brunch without makeup and did her best to smile and be polite, but didn't have the energy to be very social. As her mother, I was just appreciative of her being there with me.

I have shared J's fatigue of medical appointments. I don't know how many miles around the greater Houston area we have driven for all of them, but they have literally spanned from The Woodlands in the north to Katy in the west, to Clear Lake in the south. We are in the Medical Center every month to see her hematologist at Texas Children's Hospital Cancer Center. To say that we are grateful her allergist/immunologist's office (where she has to go once a week) is close by our house is an understatement. 

School is another issue we have both had to deal with. We are grateful to have a great administrative team at her high school who supported our efforts to put a 504 Plan in place and granted accommodations for J. Between COVID and J's HES, this has not been a stellar year academically, but we have high hopes for the future.

Side effects from treatments vary. After J's first treatment with Nucala, she said she felt like she had run about 200 miles. Her exhaustion was all day, every day for over a week. After that, her energy level perked up until a few days before her second treatment, when she began to feel the fatigue of her HES return. Fortunately, her second treatment went well and the extreme fatigue from it only lasted about a day. 

With two treatments under our belt, it is wonderful to see J starting to thrive again. She is pushing herself hard to pull up her school grades and finish the school year strong. She is looking forward to summer and hopefully will be going back to lacrosse in the fall. I found a great HES support group online and made friends with a sweet young woman who has connected with J. Yes, chronic illness is challenging and has its ups and downs, but God is good and life goes on. Here in the Perkins family, we are keeping the faith!

For more info on HES, click here for a handy printable brochure. 

Peace, love and joy to you today,

Linda

A Caregiver's Perspective: Living with Hypereosinophilic Syndrome originally appeared on Spring Sight blog, by Linda W. Perkins. Click here for more posts. 

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. 

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.

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?

Giving Thanks for What I Don't Have

“Give thanks in all circumstances; for this is God’s will for you in Christ Jesus.”
I Thessalonians 5:18

“Keep an attitude of gratitude.” I’ve heard that phrase over and over again through the years. For me, it’s what I tell myself when I’m going through a hard time. It reminds me to find the little things to be thankful for, especially when the big things in my life are looming over me like a scary monster about to chew me up and spit me out.

An attitude of gratitude has gotten me through a lot in life. In every situation, from my divorce to my father’s death, I have tried to find the silver lining in the dark clouds. “Well, at least it’s amicable,” I mused about the breakup of my marriage; and “He’s no longer suffering” is what I said when my father passed after a two-year battle with cancer. This “silver lining” approach has become so ingrained in me that my closest friends know that every trial I tell them about will be followed up with the statement “but it could be worse…”

Yes, it could be worse, couldn’t it? It’s easy to sit on our pity pot when times are tough; and yet, when you step outside yourself, you find that even with your troubles, there is often someone else hurting a whole lot more. In the “old days” when I was growing up, parents would remind us of this, even if it were to just tell us to eat all the food on our plates. “Think about the starving children in Africa,” they would say. Suddenly we appreciated that we had food at all, even if it wasn’t our favorite dish.

I am reminded of this today because I find myself surrounded by friends and family members for whom it really is worse. While I sit here typing this blog, I am looking out the window at a beautiful sunny day, thinking fondly about the walk I took in the park with a friend this morning and the laughter we shared over coffee. Sure, I have multiple chronic illnesses and a torn rotator cuff that isn’t quite healed. It can be difficult to sleep and sometimes hurts to get dressed in the morning. I don’t like that.

But then I think about a friend whose child is struggling with depression, to the point of suicidal thoughts. Another friend is sitting at the hospital waiting for the doctor to give him a prognosis on his son suffering from traumatic brain injury due to an accident. One family member’s RA treatment isn’t working and she is facing knee replacement, while another family member is preparing for cancer surgery and chemo.

Having a thankful heart, however, is not the same as giving thanks. Giving thanks is an active verb, not a passive condition. God wants our gratitude, but he also wants action behind it.

13 Reasons Why {Not}

"So don’t worry, because I am with you. Don’t be afraid, because I am your God. I will make you strong and will help you. I will support you with my right hand that saves you." - Isaiah 41:10

It was an ordinary Friday night. We had just gone to dinner as a family and were settling down in front of the TV, talking about what to watch.

"You should watch 13 Reasons Why, Mom," my daughter said. "It's really good!"

Curious about the show she had mentioned once before, I looked online to see if there was more information on it before making a decision. Why yes, there was. A whole lot of positive reviews for its direction and creativity, and a whole lot of talk from parents and psychologists expressing concern over the graphic content and messaging that was making suicide hotlines light up like Christmas trees.

If you don't have a tween or teen, you might not have heard of the latest show on Netflix, which is based on a novel in which a teenage girl commits suicide. The "13 reasons why" refer to 13 messages she left for individuals whose actions played a part in her decision to take her life.

I will be the first to tell you I haven't seen the show and I don't plan to. I will also say that the same night I learned about it, I took steps to adjust the parental controls on my TV and my daughter's cell phone.

There are some who think we as parents should watch the show "to understand what our teens face" in today's world. By all means, if you grew up in an untarnished, sheltered environment, perhaps this is the eye opener you need. Drinking, drugs, bullying and date rape...it's all there, graphically depicted (apparently).

But as for me, I haven't always lived in the light. I have touched that darkness - the despair, the depression, the shame, the hopelessness - and was almost swallowed up by it. I'm not going back. And I'm certainly not taking my 12-year-old back with me.

When I began writing this blog almost three years ago, it was to give people hope. Living with chronic illness is not easy. Depression is common, and suicide is not unheard of. When the pain feels like it will never end, when your life feels over, it is easy to give up. There are those who do. But I'm here to tell you - DON'T. 

I spent the first few months of this year in daily, intense pain from chronic migraines. If you have ever had a true migraine, you will know what I mean when I say it's not just a headache. At one point, during a trip to New York, I rocked back and forth on the bed, holding my head, crying and screaming, "Please help me. Somebody, help me!" Not long afterwards, I went into the bathroom and threw up, before crawling back into bed and finally passing out from the pain.

If ever there was a degree of physical pain that made me feel like giving up, it has been during episodes of severe migraine. I have literally felt like dying at times, because I thought I couldn't handle the pain even one more minute.

And yet, here I am.

Thankfully, God designed our bodies not to remember physical pain. I can tell you what happened, and generally how I felt, but I can't re-live the pain itself. Unfortunately, that isn't the case with emotional scars. Those wounds can sometimes take a lifetime to heal, and when they are reopened, they can hurt just as much as when the initial pain was inflicted.

When I am hurting physically, I may feel like dying, but when the pain goes away, life looks sunny again. It's easy to then see that "this too shall pass" because it really does. Even with chronic illness, there are moments when the pain dissipates enough to find moments of joy. It's important to look for those, because it helps you endure the rest of the time. Looking at my photos from New York, no one would ever know I had spent half the trip in pain, because the rest of the time, I was all smiles! Yes, there were a few of those pics where I was in "fake it 'til you make it" mode, but for the most part, I managed to salvage some really great moments that far outweighed the nightmare migraines I endured.

We have to be careful with emotional pain, though. I don't know who coined the phrase "Sticks and stones will break my bones, but words will never hurt me," because that's just not true. Harsh words, coming from friends or family members, cut deep. We begin to believe what we hear, and wonder if we really are OK...or not. 

Our mistakes can hurt too. When I look back at my teen years and even into my 20's, it's easy to beat myself up over the many poor decisions I made. I may have changed my ways, but the consequences of those decisions didn't just disappear. There are so many times I have wished I could go back and have a "redo."

And sexual violence and abuse...well, that pain cut to the very core of who I was, and it took years of therapy for the flashbacks and nightmares to stop. I can still remember hands holding me down, then the hand placed over my mouth as I cried out in pain, ordered to "shut up!" because someone might hear; and the sting of my tears when it hit me that I was not a virgin anymore.

Night after night, for many years, I cried out to the Lord, "Why God, why?" I certainly could have come up with 13 good reasons to take my life. And yet, I did not. Growing up in the church, I was told suicide was the one unforgivable sin, because how can you confess killing yourself when you are already dead? I'm not sure that God in His infinite mercy wouldn't have forgiven me, but I do know that was not the only thing that kept me alive. 

The words spoken by God in Isaiah 41:10 are powerful. Don’t be afraid, because I am your God. I will make you strong and will help you. I will support you with my right hand that saves you. Every moment of every day in which I have been in either physical or emotional pain, I have had to remember them. God will help me. God is with me. God will save me.

Despite my health situation, despite my poor choices, despite whatever bad things I have believed about myself, and despite the physical and psychological trauma I have experienced, I have held on to those promises: God will help me. God is with me. God will save me.

And you know what? He has.

Jeremiah 29:11 says that God has a plan for us...a good one! The only way to find out about that plan, though, is to live it out. We have to wade through the mud, fight the battles, and allow God to cut away entanglements that hold us back, in order to reach the promised land He has for us. Sometimes it isn't easy. Sometimes, we aren't sure we are going to make it, or whether it's worth it. But it is. It always is. How do we know? Because He says so.

Back in my younger days, surrounded by darkness and not seeing much light ahead of me, I could have found 13 reasons why my life wasn't worth living. Today, looking back in hindsight, I can find 13 reasons - and more - that God wanted me to hold on for. 

If I were able to talk to my teenage self and tell her the 13 reasons why not to take her own life, here are what they would be:

1. God has a plan for you - a good one - and you will get to hold His hand through your entire journey, finding more comfort and joy, peace and love than you ever thought possible.

2. You may not realize it, but you're not alone. A lot of people look perfect on the outside, but their life is messy too. Even Jesus suffered through gossip, betrayal, pain and loss. He gets what you're going through.

3. You think if you were only "good enough" those people will like you. The truth is, some people won't like you even if you're the most wonderful person in the world. That's more about them than it is about you.

4. You think your pain is never going to end, but I promise it will. One day, you'll graduate. One day, you'll move (or they will). One day, you'll meet people who like you just the way you are. One day, your broken heart will heal. One day, you won't just notice the rain. You'll see the sunshine and notice the flowers too.

5. Your parents aren't perfect. Neither are you. Do the best you can to deal with them, the same way they are doing the best they can to deal with you. That whole parenting thing is as hard for them as it feels to you.

6. Everyone makes mistakes. Lots of them. Learn from them, but forgive yourself too. God loves you, warts and all, and the Bible is full of people who have screwed up but God used them anyway! Keep putting one foot in front of the other and you will eventually get where you need to be.

7. You may feel powerless, but God is all powerful. Give your biggest problems to Him, do the next right thing, and leave the results to Him.

8. That rape or physical abuse? No, it's not your fault and don't let anyone say otherwise. You didn't ask for it and you didn't deserve it. Stop blaming yourself and get some help instead.

9. Just because "everybody's doing it" doesn't mean you need to. There are many miserable people in the world, doing things they know aren't right. Don't become one, just to fit in. Live your values and you'll keep your confidence.

10. There isn't any problem that an alcoholic drink or drug (or act of self-harm) won't make worse. And even if you feel better momentarily, there will be a hefty price to pay the next day or even further down the road. Reach out for help instead.

11. When God feels far away, remember who's moved. He is always there for you. Don't forget to reach up.

12. Don't be a victim of "stinking thinking." Fill your mind with positive thoughts and surround yourself with positive people. You have to look beyond your problems to find the solutions.

13. Life is like a rose: it is full of petals and thorns. Yes, sometimes it's painful, but there's an awful lot of beauty there too. Count your blessings every day. A little gratitude can go a long way.

Had I not chosen to live through the pain of my early years, I hate to think what I would have missed later on: quiet sunrises, gorgeous sunsets, warm embraces, wildflowers in the spring, happy smiles and travel across the miles. Every day, there is something new to look forward to.

The world is tough and pain is real. Just don't forget whose you are, and who's got your back! God will help you. God is with you. God will save you...every time.

Peace, joy and love to you today,

Linda

13 Reasons Why {Not} 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)

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)

Quit Yer Bellyachin'

"Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things." - Philippians 4:8 (NIV)

Happy New Year! Or is it?

If the Christmas season is "the happiest time of the year" then is it any wonder that after all the tinsel and glittering decorations are packed back up in the attic (except in my house, of course, where we are total slowpokes about leaving the holiday season behind), there seems to be a period of letdown?

Yes, here we are in January, and 'tis the season to work on those resolutions. Whether you're trying to lose weight or get organized, this time of the year can just feel hard.

Gone are the holiday parties. Now it's time to work off the 10 pounds you put on while noshing on all that fabulous food consumed at them. Forget the tinsel and bows around the Christmas tree. Now you're trying to find a place to put it all, as you search for those financial files underneath the rolls of wrapping paper strewn across your office.

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.

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.

Doing Good in the Face of Evil

“Let love be genuine. Abhor what is evil; hold fast to what is good.” – Romans 12:9 (ESV)

A couple of weeks ago, I wrote about listening to the Holy Spirit for wisdom. In that post, I was referring to wisdom in the context of caring for ourselves. Today, I’m going to talk about it in a different context.

In James 1:5, the Bible says that if anyone asks God for wisdom, it will be given to him. Isn’t that a great promise? So how is it, then, that we are less than a month away from the U.S. election, and there are so many of us seeking wisdom, and yet we still don’t know what the right decision is with regards to voting?

One of the most life-changing Bible studies I have ever done is Experiencing God by Henry Blackaby and Claude King. In it, the authors discuss different ways in which God speaks to us: through the Bible, prayer, church, wise counsel, circumstances, and of course, through the Holy Spirit.

The Bible is filled with men and women who made poor choices, so we can’t look to them as examples of what we should or shouldn’t do. What we can do, however, is look at what God himself – through His encounter with Moses and through Jesus – tells us about His will for our lives.

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.

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.

The Heart of a Father, the Heart of God (Guest Post)

Today, I am happy to introduce Terri Fullerton as my guest blogger. I met Terri at a Christian writers conference recently and her ability to see spiritual truth in everyday events is remarkable. 

Terri loves stories of redemption and things that are funny, and she encourages others toward hope and freedom. She also longs to share how big and loving God has been in her own life. When Terri is not writing or researching stories, she is often outside. She enjoys hiking, backpacking, traveling and photography. Terri is contributing writer at The Glorious Table, Life Letter Cafe, and Huffington Post Blog. 

The Heart of a Father, the Heart of God

In January of 1982 I stood frozen before the television as a breaking news report interrupted whatever show I’d been watching.  Shortly after takeoff from Washington, DC a plane bound for Florida hit the 14th Street Bridge in a winter storm and plummeted into the icy Potomac River.

There were six survivors, initially, clinging to the tail of the plane, a small island of hope in the freezing water. Emergency response teams arrived quickly, but access was limited by the river’s thick ice.

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.

What Doesn't Kill Me Makes Me Stronger

“In this world you will have trouble. But take heart! I have overcome the world.” – John 16:33

I looked around me at the women in the pool, watching as their gray-haired heads bobbed up and down to the beat of the loud music. Their wrinkled, sagging skin told me they had at least 10 or 20 years on me, and yet I was the one struggling to keep up.

When we finally got to the end of class, I commented to one lady, “Wow, this water aerobics isn’t for sissies, is it?” She just shrugged and smiled. She was there every day. To her, it was no biggie. To me, this was more than a struggle. It was a matter of life and death.