It has been 20 years since I was diagnosed with rheumatoid arthritis. The last two decades have been a long, surprising journey to say the least. The picture above was in 2008 on one of our many trips from California to Texas. We stopped to see the Grand Canyon, and I remember having some bad pain that day which made it really hard to walk around. You might wonder why most of these photos are a little grainy or blurry? I feel like that encompasses life with chronic pain. It can feel a little like you aren’t fully in a place mentally.
Most readers and friends are always curious, how is it living with chronic pain every day? Each day, I get asked this dozens of times on Instagram.
I know there are many of you suffering with pain as well, so I hope this can inspire, comfort, and help you get through it.
First, I would like mention not every day over the years has been painful. Some days have been great, others miserable, some very hard, and many a combination of both.
As a child, chronic pain was confusing. I would wake up as a young 10-year-old in so much pain throughout my joints. The pain didn’t make sense to me, so I usually just tried to do all the things I always did. Running, playing sports, goofing off with friends, and all the things intermediate school kids do.
Many times, I couldn’t do those things. It was embarrassing because no one understood the pain either. Although they didn’t mean it, many of my friends would make fun of me for having an “old persons” disease. Teachers doubted the truth behind it until I started bringing notes from my rheumatologist explaining I had Juvenile Rheumatoid Arthritis and suffered with pain, fatigue, being withdrawn, and doing normal activities. None of my teachers or peers meant to be this way, they simply didn’t comprehend what was happening.
I spent many days in junior high and high school going to the Scottish Rite Hospital in Dallas for treatment. My knee was always so swollen and almost to the size of a cantaloupe. They would drain it, inject it with steroids, and send me home with medicine.
When my husband and I got married 10 years ago, everyone warned him that living with someone who had a disease like mine would be challenging. Of course, he didn’t care about that. He was honored to marry me and take care of me.
The arthritis at this time in my life had gotten a little worse. My knee was still a problem joint, my elbow had begun to hurt, and I had some issues with my feet, ankles, and toes.
At this point, I had taken almost every drug on the market. Most didn’t really help, but at 20 I started taking biological injections. I took Humira, Enbrel, and Simponi over the years. It was the first time in almost 10 years I had relief. They helped tremendously, and I felt like I was getting back to normal. I still had pain daily, but not as bad.
Then, my husband got very sick. He was diagnosed with ulcerative colitis at 21, and within 2 years he had the beginning stages of colon cancer. The suffering and chronic pain he endured was unreal. His pain affected his life more than mine ever had. He was in the Marine Corps, and missed so many days of work because he couldn’t get out of the bathroom. Seeing him suffer like that was hard, but I felt closer to him because I knew suffering and pain.
Strangely, I forgot all about my joint pain those few years. I still had it, but it didn’t matter anymore. My husband needed me to be strong and able, so I prayed the Lord would sustain my pain so I could help him. God answered my prayers.
At 23, he had his entire colon removed with a very intrusive surgery. A few months later he had another surgery to reattach his small intestines to his new J-pouch inside.
The pain he endured during those months was inconceivable. He was cut at least 13-14 inches all the way down. He would cry out in pain every night, regretting his decision. Then he dealt with a bad wound that wouldn’t heal, so he had to have a wound vac. The sponges they put in every week would attach to the skin, then the skin would grow into the sponge.
Having those pulled out each week was even more painful. To this day, he says that having that sponge pulled out, which was 2 inches down into his gut, was the worst pain he has ever gone through.
All this time, I never once thought about my pain. What he was enduring was far worse than anything I had experienced.
When he finally got out of the Marines, and we moved back to Texas, I had a severe flare. He was doing better, and sure enough, the Lord had answered my prayers to sustain me through his suffering.
I started getting treatments again for RA. It was my elbow this time. I was struggling even doing work in chemistry labs because my elbow was not functioning. I started getting injections in it again, it would be fine for a few months, then come back.
The rest of my college education was pretty painful. I was still on biological injections, but they didn’t help the pain 100%.
Around 24, I had made a big lifestyle change. I started researching, testing, and learning everything I could in the chemistry field about nutrition, inflammation, supplements, or anything that could help chronic pain.
I share all that here with you on Chemistry Cachet. Many of the things I have learned, have helped so much.
When I graduated college, I had to wear a wrap on my elbow because I could barely hold up my arm. The next few years were tough ones for RA. Although my lifestyle was healthy, I was just struggling with pain every day.
My husband was doing well after his surgeries, but he will never be the same again. He too must watch his diet, live healthy, and avoid certain things.
And the thing is, he still struggles with his health. There were a few good years, but he started having symptoms again, and each day is challenging for him. He works in law enforcement too, so his job is difficult and makes his health harder to deal with.
You might be wondering if the military took care of him? No, they gave him a small disability, but refuse to increase it although his health is not well. We pay for everything out of pocket.
Exactly one year ago, I got off all my medication for personal reasons. I felt good though. I had absolutely NO arthritis symptoms for the first time in my life. I thanked the Lord each day for feeling great.
If you read Chemistry Cachet, you know I do many things to keep it together. I take supplements, drink a special drink each morning, make anti-inflammatory smoothies, eat super healthy, stay active, and most importantly trust God.
Then a few months ago, the pain came back. In fact, I woke up this morning in so much pain in my elbow, I was inspired to write this post. My elbow and knee are both very painful and swollen.
Yesterday, I had to wear wraps on both just to help my grandmother go to the store.
As I was sitting here in pain, I thought about everyone else in pain. Chronic pain is hard to deal with. It can consume your life, interrupt your daily activities, and it can be downright depressing.
I won’t lie to you, I have been bummed out about suffering again. I haven’t been able to take my daily walks I enjoy so much, I haven’t been able to work out as much which I love, and I can’t work in the yard.
But the Lord has really inspired me to keep helping others through my suffering. That is the reason Chemistry Cachet was formed. To help others!
I wanted to help you through my knowledge, chemistry, and my personal experience. Everything I share is tested by me! I share what helps and what doesn’t!
Thank you for being a part of this journey too. If you have health problems or a loved one who does, this is the place for you. Join me on social media for daily inspiration or feel free to come to this website each day.
2 Corinthians 1:7 “ And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort.”
And I hope you can find comfort here and help.