Tuesday, May 18, 2021

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,


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

Wednesday, January 27, 2021

Rest for the Weary

Image by <a href="https://pixabay.com/users/giuliamar-34680/?utm_source=link-attribution&amp;utm_medium=referral&amp;utm_campaign=image&amp;utm_content=330869">Giulia Marotta</a> from <a href="https://pixabay.com/?utm_source=link-attribution&amp;utm_medium=referral&amp;utm_campaign=image&amp;utm_content=330869">Pixabay</a>

 "Come to me, all you who are weary, and I will give you rest." - Matthew 11:28

I planned to write this post at the end of 2020. It was a long year, wasn't it? We thought it couldn't get worse. Yet, here we are in 2021 and there are still major upheavals in our lives due to the COVID-19 pandemic. In the United States, we have a new president and while some are happy about that, some are clearly not, as evidenced by the violent storming of the Capitol by extremists on January 6 and the subsequent impeachment of Donald Trump. Sigh. Drama, drama, drama. Whichever side you're on, the daily news is pretty exhausting most of the time. Add in a dose of chronic illness (with the fear of getting even sicker thanks to the coronavirus) and it can be pretty overwhelming, right?

If it's any consolation, life back in Jesus' time was no less complicated. Throughout the Bible, you find stories of ordinary people caught up in extraordinary circumstances. Famines and plagues were not uncommon. God's people traveled from land to land, sometimes being enslaved or persecuted, while at other times finding themselves wandering around in the desert due to their own disobedience. Jesus' family had to flee the country to protect Him from being executed while He was just a baby, and then He became highly unpopular with the Pharisees, from the start of His ministry all the way through to His crucifixion. Jesus knew that life could be stressful, not just some of the time, but a LOT of the time.

Jesus' invitation to rest in Him when we are weary reflects the prayer of King David in Psalm 23. Verses 1-4 from the New Living Bible say:

The Lord is my shepherd;
I have all that I need.
He lets me rest in green meadows;
he leads me beside peaceful streams.
He renews my strength.
He guides me along right paths,
bringing honor to his name.
Even when I walk through the darkest valley
I will not be afraid,
for you are close beside me.
Your rod and your staff
protect and comfort me.

Do you see here what resting in the Lord means? We not have all we want, but in Him, we have all we need. Like a shepherd tending his flock, Jesus lets us rest when we are weary, while He keeps watch over us. He leads us beside peaceful streams, giving us living water for our parched and thirsty souls. He renews our strength when we feel like we can't go on. He guides us along right paths, giving us discernment and wisdom, direction and purpose, when we aren't sure which way to go. Even when we are in the darkest times of our lives, we need not be afraid, for we know He is close by, there to protect and comfort us.

No matter what you may be facing in 2021, you are not alone. God is with us in Emmanuel. He will walk with you, guide you and protect you, allowing you to rest in His presence while regaining the strength you need to continue on your journey. Do not be dismayed. Do not be discouraged. Do not be afraid. Instead, take courage from the power of His might. And when you are weary, go to Jesus. He will give you rest.

Peace, love and joy to you today.


Rest for the Weary originally appeared on Spring Sight blog, by Linda W. Perkins. Click here for more posts. Get even more encouragement by following me on Facebook. 

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.


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,


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.