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notes from my rheumatologist explaining I had Juvenile Rheumatoid Arthritis and suffered with pain, fatigue, being withdrawn, and doing normal activities.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.
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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.
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Such a powerful post!! Praying for you!!
Thank you Megan! I appreciate your support <3
My sister has had RA since she was ten and my husband was recently diagnosed with RA, although we suspect that he has had it for a few years. That is the main reason I started reading your blog. Thanks for sharing a small peek into your life. I will be praying for you and your family. Isn’t it amazing what God gets us through? Also, thanks for sharing your tips for making this disease more bearable!
Thank you Tammy! I am so happy to have you here, and so grateful I can share this information to help your family! It really is amazing what God gets us through, and how all the things we go through can be used to help others as well 🙂
It is through adversity that we truly learn who we are as a person. I know life has given you both some difficult challenges, but you always persevere with faith and courage. I am so grateful for the loving care and support you gave to my son during the greatest trial of his life. I know that he wouldn’t be here today if it wasn’t for you. I thank Father for the rich blessing it is to have you in my life.
Thank you Kathy. I am so grateful to have him in my life, and the honor to help him through tough times. We appreciate all your support for us everyday!
Dear Alexis, thank you for sharing your story. My husband and I also suffer chronic pain – me from FM and OA and he from chronic daily headaches and migraines. Although it can be very difficult, there is much that we can learn through suffering. Trusting in God and patience are two of the biggies. I look forward to the day that our physical bodies will be redeemed. In the meantime, I pray that God will bless all those who suffer chronic pain with comfort, strength, hope and peace as we wait for our healing and deliverance.
Thanks so much Shari! We do learn so much through our sufferings, and trust gets us through each day. I too pray for those things, and so happy to hear from you 🙂
You are so strong for both yourself and your husband–keep the faith and keep up that strength!
Thank you Lauren! I appreciate that 🙂
I hate your pain, but I love how your faith in God has strengthened despite what you’ve been through. You are strong because you let God be your strength, and I so admire that. Love you.
Yes! That is so true! So blessed with best friends like you, love you
Dear Alexis… thank you for sharing your testimony and your faithfulness to the Lord despite chronic daily discomfort and pain, and also taking care of your husband in the battle for his life/health. As you (may have) said in your wedding vows – in sickness and in health – so our Lord provides for us, in sickness and in health. You and your husband are sharing/showing the Lord’s love for each other. as He first loved us. As the previous commenters said, you are strong because of the Lord.
With my RA, I have nothing to complain about compared to your and your husband’s ups and downs with pain/discomfort. Praying for you and your husband for comfort and doctors’ wisdom for treatment. Hugs…
That is so true Laurie. I know you have struggled with some hard days too with RA. Thank you for being such a great friend and reader over the years 🙂
This is such a beautiful post! I’m so sorry you have to go through all of this, but what an amazing testimony that your faith has stayed strong throughout these years. <3
Thanks girl! It has definitely been an interesting journey, but I am so happy to be able to share with others 🙂
Reading this made me first think of my grandfather who had Rheumatoid Arthritis but he was old, next it made me think of my mum who suffers from chronic pain 24/7 and thirdly I thought how wonderfully strong you are and how the good Lord allowed your pain to take a back seat when your husband needed you to be there for him with all he had to endure it is terrible that you have to struggle with Rheumatoid Arthritis day in and day out and I get there are good days and bad days but I hope you have more good days then bad days, you amazing woman.
That is so sweet of you Jo-Anne! I am sorry to hear your mom suffers from pain too, I bet that can get rough for her. I think there are definitely more good days which I am thankful for 🙂
Thanks so much for sharing. I can’t imagine having that much pain, and for most of your life too! It’s great you’ve found different ways that make it a bit easier. It sounds like your husband has gone through a lot too – it’s great you have each other and can understand some of the same things. I’m sorry the military didn’t take care of him though.
I have adolescent scoliosis but I didn’t find out until college when I was such bad back pains. It’s not terrible most days – though it hurts practically everyday.
-Lauren
We definitely have an understanding for each other we didn’t always have, so that has been an unexpected blessing 🙂 Oh, that is rough to deal with back pain like that! I had a friend who just had surgery for her scoliosis she had most of her life too.
I am the mother of Alexis and I can say that they both have set an example of what Faith in Jesus can get you through… and as they both continue to face the enemy daily they know it is the lord who fights with them and for them… GOD BLESS your every endeavor and may all you say and do be to the GLORY of GOD! Love MOM
Thank you Mom! And thanks for all your support each day 🙂
I’m so sorry to hear about you struggling for most of your life. I can certainly understand the daily struggles. I too have chronic pain. I was in a terrible car accident when I was 17. I was in the middle of a 5 car pile up and was hit by three other cars. My head and shoulders went through the windshield, I hit the steering wheel and hit the drivers window. Messed up my neck and back pretty well. In the hospital they were so concerned about reconstructing my face, they paid no attention to the rest of my body. Needless to say I have suffered neck and back pain for 40 years now. I have had 14 surgeries as a result of this and continue with injections and surgeries. I pray every day for people in chronic pain. It’s a tough life to live especially when others don’t understand. God bless you and just keep moving forward.
Hi Heather. Oh I am so sorry to hear about your car accident! What a difficult thing to live with for so long. I pray for others in chronic pain too, and I always hope they have loved ones that understand the pain. Thank you for telling me your story!
I am a gold star Marine Mom with spinal arthritis. My thanks for this post and appreciate your spirit of Semper Fi.
Hi Mary! Oh, I am so sorry you have spinal arthritis. I know that is rough. So happy to have you here 🙂 Semper Fi!
I have had RA for 15 years but got it after giving birth to my first son. I never had the pain as a child but its my biggest fear that one of my 3 sons will inherit this disease. I can’t imagine all you went through dealing with this as a child, my heart breaks for you and your parents having to endure that.
And then to have your husband suffer from ulcerative colitis, that sounds awful too. It’s difficult to deal with chronic pain for sure and I’ve been working my way though it, Remicade controls my RA pain pretty well for now but I also try to do a restrictive diet, walk every day and stay positive mentally through my blog about celebrating life and thriving with chronic illness,
Stopping by from SITS sharefet, glad to meet you!
Thank you Tanya! I am sorry to hear you have RA now too, that is a tough road for sure. Nutrition and supplements have really helped me the last 5 or 6 years, and I have been on many different medications over the years that have helped. Exercise makes a difference too 🙂 Thanks so much for stopping by and it is so good to meet you too! I hope we can connect more 🙂
Hi Alexis! I just found your blog through Hometalk.
I was interested to read that you and your husband also struggle with chronic pain. You can both are amazing people who have made the best of living and thriving with debilitating diseases. I have suffered with pain all my life. My pain was not diagnosed even though I went to orthopods and rheumatologists. When I was 15, I hurt my back when I took a bad fall while at a horse show. I was very athletic and managed to deal with the pain until I had a bad car wreck in ‘95. I broke the injured vertebrae and have severe nerve damage. I had reconstructive surgery and managed pretty well until about 2008. At that point I had a hysterectomy, which caused a flare up of the childhood pain. Finally in 2014, I was dx’d with psoriatic arthritis. So many things fell into place with that DX. My mother’s side of the family suffers with autoimmune disease, so it wasn’t much of a shock. Enbrel didn’t work for me and now we’re exploring other options. I too take handfuls of supplements per day and amazingly, they do help my inflammatory levels, but not the pain. My life has been difficult since my diagnoses and now I’m caring for my mother full time. You and your husband are an inspiration to me. And I thank you for your blog. I’m looking forward to reading your pain posts and all your other chemistry hacks! God Bless!
HI Mia! I am so happy you have found our website! And I look forward to having you join us. I am sorry to hear about your chronic pain struggles 🙁 I know how tough that is, but I pray you can find relief soon. And I hope some of my research and tips can help too. I have some great new information coming out for autoimmune and pain tips, so I hope you enjoy reading it! Have a wonderful day!
I am a new subscriber. I too don’t have a colon and I used to work for 4th law enforcement battalion (Marine Corps Reserve). Can you post more on uc? I too believe in God.
Thanks for subscribing! I have talked a little about UC and some things my husband has eliminated like dairy and eggs.
I’m a new subscriber and enjoy reading your posts. Do you think any of your natural treatments would help my OA? So far injections, gel, over the counter meds have not helped my knees. My doctor has no other suggestions as I have exhausted the typical prescriptions, ice, Tramadol, etc. I’ve already had one horrible knee joint replacement.
I’m ready to try anything. Thanks for your articles and research.
OA is a going to be a lot different since it deals with loss of cartilage. I have it also in my knee from damage. The only relief I really get from it is taking collagen and using heat therapy. Collagen helps lubricate the joints.
Hi Alexis, I just ran across your website today and read some amazing interesting helpful information. I am 58 years old and I was diagnosed with with sarcoidosis 32 years ago. Out of the 32 years I only been on medicine one time here recently and that was prednisone. It worked but it was just a temporary fix. So, I tried to eliminate dairy products as much as I could and reading your article I need to eliminate it altogether. I didn’t drink a lot of milk per say which I’m speaking regular milk. I’ve been using almond milk for about 3 years. What I’m struggling with is eggs. I don’t buy regular eggs but I have been using Eggland’s Best which is supposed to be better I’m not quite sure and I like to eat cheese and ice cream. I changed my diet a lot but not eating red meat, ice cream and cheese and of course lemonade all dairy product as much as possible. At this moment I am taking turmeric and black seed oil and that has been very helpful. However, I’m still having problems with only my knee and of course rashes on my body. And I think that comes probably too with stress as well as not eliminating all dairy product. I read the article about A1 and A2 in milk and that was really good information. My question is mainly with cheese and eggs. Are there certain kind of eggs and cheese that I can still eat without it being harmful to my body? God has truly kept me, but I know I have to maintain by exercise and eating a good diet in order to continue to enjoy life. May God bless you and your husband continuously and continue to let God use you because you are very helpful to others.
Hi Patricia! Thanks for sharing your story with me 🙂 Eggs are not dairy, so most people who need to eliminate dairy still do great with eggs. I enjoy eating eggs, they are a great source of protein for me. My husband who suffers with autoimmune issues tried eliminating eggs from his diet, You can read more about that here. When it comes to eliminating dairy though, you do need to eliminate it all to get the benefits. This includes milk, cheese, and any store-bought packaged products that contain dairy in them. I have done well keeping dairy out of my diet. Another thing to consider is eliminating gluten. Some people who have autoimmune issues have good results eliminating gluten. I eliminated it for a long time, but it never did much for me. If you want some more of my tips for what I do when I am dealing with a flare, you can read this post. IT can be helpful for anyone dealing with any type of flare! I hope this helps 🙂
Cool site. Thanks for your generosity.