My Life With JRA

By tammyrstevens17

1 min read

Hello my name is Tammy and I was diagnosed with Juvenile Rheumatoid Arthritis when I was 2 years old. It was hard growing up with a disease like RA it’s hard for anyone even harder for a child. From a young age I knew that I couldn't let my disease run my life. I still had to do daily chores and do daily exercises. I was always going to doctor appointments and I felt like I was the youngest one at the doctor’s office. I would get cortisone shots and fluid taken out of my knee's, but it never stopped me from doing what I wanted to do. I found out that I had to pace myself if I wanted to get anything done. If I worked to fast, I would get tired really fast and not be able to finish what I was doing. I was able to do the things that other people did I just had to do it at my own pace. I am 26 now and engaged to a wonderful understanding man who does a lot for me. I have chronic JRA and because of that there are things that I just can't do. He will be helping me through my knee surgery. Knee replacements surgery makes me nervous but I am ready. He is always there for me when I need him. I know its just as hard on him to see me go through the pain and the disease I have. I wanted to tell some on my story to maybe help someone else or someone helping me.

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Lauren Tucker Community Admin
Hi Tammy, Thanks so much for sharing your story with us and for being part of our community. We have many community members who have been diagnosed at all ages, you certainly are not alone. We are happy to hear you have such a supportive and helpful fiance! We wish you the best in your knee surgery and please come back and let us know how you make out with your surgery, we will be thinking of you. In the meantime there are many articles associated with the knee on our website and we enourage you to take a look if you haven't already done so. Here is a link: <a href='https://rheumatoidarthritis.net/?s=Knee&submit=Go' target='_blank'>https://rheumatoidarthritis.net/?s=Knee&submit=Go</a> Thanks again for being part of our community. Wishing you the best, Lauren (Community Manager <a href='http://RhuematoidArthritis.net' target='_blank' rel='noopener noreferrer ugc'>RhuematoidArthritis.net</a>)
1. tammyrstevens17 Member
 thank you i really want to help someone is it okay that i talk about JRA
2. Lauren Tucker Community Admin
 Hi Tammyrstevens17, Yes we welcome you anytime to talk about JRA. In fact we have a forums specifically related to JRA. Here is the direct <a href='http://link.https://rheumatoidarthritis.net/?p=950' target='_blank' rel='noopener noreferrer ugc'>link.https://rheumatoidarthritis.net/?p=950</a> Thanks so much for being part of our community. Best, Lauren (RheumatoidArthritis.net Team Member)
melis1814 Member
I can not relete with this post more. I have been through the same treatments from the age of nine and I had a hip replacement surgery two years ago. I wish you the best in your surgery. It is good to know that there are other people experience similar conditions and think like you.
1. Jillian S Moderator
 melis1814, Thank you so much for your comment. It can be so comforting simply to know that we are not alone in living with a chronic disease. We appreciate you opening up and sharing your experiences. How have you been since your hip replacement surgery? Best, Jillian (Rheumatoidarthritis.net Team)
tammyrstevens17 Member
I have seen the surgeon about my knee replacements. My doctor said I need knee replacements first and that it may help my hip pain, he thinks my hips hurt because I walk on my toes. Thank you guys for the positive posts and it is nice to have someone to talk to and read stories of other people who have chronic disease.
ra4decades Member
It is good to finally find someone else that started with JRA. I believe my body started trying to tell me something was wrong starting around 5. It hit hard and fast. I am much older and grew up on a small family dairy farm where I worked just like every one else. On Good Friday we had spent the day working on cleaning up a piece of property. Saturday I didn't feel well but my Mother made me go to a family wedding. Sunday was Grandma's house. By Tuesday I couldn't turn myself over in bed. I was 13 at the time. I went to school at home the rest of that year and the first 3/4 of 9th grade which is when we started being bussed about 20 miles to go to high school. I missed that period where you meet the kids from the other school which meant I didn't know many people when I did get to go back to school. I was misdiagnosed with Rhuematic Fever. I wasn't diagnosed until I was 21. I had my left hip replacement done at 23. I am 56 now and have 5 artificial joints and have had 10 orthopedic surgeries. I just had my 2nd knee replacement 6 weeks ago so I am still in physical therapy. Because something happened to one of the nerves I can not move my foot backward toward my leg and have to wear a custom orthotic. The doctors and physical therapists are telling me it will be between 6 month and a year minimum for this nerve to regenerate itself. They told me they found 'soft bone' during the surgery which is sort of like the opposite of osteoporosis where your bones are brittle but in both cases are prone to fractures. I tell you this because it is caused by a lack of of vitamin D or an underlying problem that keeps it from being absorbed. If you have taken Plaquenil or corticosteroids you might want to have them check you vitamin D levels or do a bone scan or something around the area they will be doing the surgery. Just a recommendation based solely on personal expierience. You have an amazing uplifting spirit and I wish you smooth sailing with your surgery. Keep that attitude and it will make this battle easier to fight no matter what it throws at you on a given day. If you have people around you that want to be around you and assist you when you need it, hang on to them. Make sure to get lots of extra rest prior because all the post-op and physical therapy can be exhausting. I wish you a quick and easy recovery.
jrf5460 Member
I, too, have a form of JRA called Systemic Onset Juvenile Idiopathic Arthritis, or simply Still's Disease. I was diagnosed retroactively in 2003 back to 1964 as my first attack. My disease would come and go all my life until I was 35 when it came back to stay. I had a dizzying array of symptoms that no one doctor could treat, until I was hospitalized and a tremendously great and ingenious rheumatologist came to see me late one night. He's the one who was willing to do some detective work in my case, even to the point of speaking with my mother about what happened to me in 1964. That's how I was diagnosed retroactively. My disease finally conquered me forcing me to "retire" in 2007. Since then I have become progressively worse taking a bucket full of medicines that don't work. I have tried most biologic medicines with little to no affect. I've had multiple organs impacted by the seemingly wanton rage of inflammation in my body. The drugs used to stem the inflammation have their own horrible side effects. It then become what is worse, the disease or the cure? I continue to muddle through my days wondering if today is going to be a good day or a bad day. I keep a positive attitude, although this response isn't very positive, and try to remain active by participating in my favorite pastime, backpacking/hiking/camping. Although I have found myself in difficult situations in the woods twice now dealing with terrible flares while miles from civilization. It doesn't deter me, except for having to cancel some planned hikes. However, I remain optimistic and continue to hope for better days, hope that my new medicine regime is working and hope to continue my passion of backpacking. I just hope.
1. Jillian S Moderator
 jrf5460, Thank you so very much for taking the time to share your inspiring story. I am sorry to hear about everything you have been through over the past years but am glad you finally found a doctor who gave you an accurate diagnosis. Staying hopeful when living with a chronic disease is no easy feat. You are very strong and brave for not only striving to embrace a positive attitude but continuing to participate in your pastimes (which require a lot of strength and endurance- physically and mentally!!) It is so helpful and reassuring to learn from one another, and members like you who are willing to share their story make that possible. I wanted to share a few articles with you that I thought you might enjoy! Fostering Hope While Dealing With RA: <a href='https://rheumatoidarthritis.net/living/fostering-hope/' target='_blank'>https://rheumatoidarthritis.net/living/fostering-hope/</a> Holding Out Hope?: <a href='https://rheumatoidarthritis.net/living/holding-out-hope/' target='_blank'>https://rheumatoidarthritis.net/living/holding-out-hope/</a> Study: <a href='https://rheumatoidarthritis.net/news/new-study-brings-hope-scientists-discover-switch-autoimmune-diseases/' target='_blank'>https://rheumatoidarthritis.net/news/new-study-brings-hope-scientists-discover-switch-autoimmune-diseases/</a> Thanks for being a part of our community. Warm regards, Jillian (Rheumatoidarthritis.net Team)
tammyrstevens17 Member
My JRA also started when I fell and sprained my ankle and the next morning I woke up with my knee the side of a big grapefruit. I was 2 at the time and I was in a footie PJ's and they had to be cut off me because the zipper wouldn't go over my knee. After that I have had chronic JRA ever since. It does suck but it makes me appreciate what I have and the activity that I can do. I also am always reminding myself to be positive when I am in pain. Thanks for all the advice, It means a lot to me to have someone else who fully under stamd what I go though on a day to day basis. Thanks for your time
1. Jillian S Moderator
 tammyrstevens17, It is great to hear from you again. Your optimism radiates through your post. You should be proud of how far you have come and you are most certainly an inspiration to our community. This article reminded me of you and I hope you enjoy reading it 😀 <a href='https://rheumatoidarthritis.net/living/cherishing-the-good-times/' target='_blank'>https://rheumatoidarthritis.net/living/cherishing-the-good-times/</a> Thanks for being part of this community- we are so happy to have you here. Jillian (Rheumatoidarthritis.net Team)
2. tammyrstevens17 Member
 Jillian, Thank you for your compliment you wrote me. It was very nice.

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