Facing Forward is a series that shares the lives of people living with arthritis and other invisible illnesses. The goal of the series is to see how we are similar and how we are different – and to remind us to keep moving forward because we aren’t alone!
Location: Southern California
Diagnosis/Diagnoses: Juvenile Rheumatoid Arthritis
Age at Diagnosis/Diagnoses: 3
How are you currently treating your condition?
Nabumetone 500mg twice a day and Enbrel 50mg once every two weeks (but I've decided to stop Enbrel again because I've had too many infections from it). Rest, hot showers, and massages whenever possible – but they're all far and few with two little ones running around. Remembering to slow down is probably the best medicine...if you overdo it today, you'll pay for it tomorrow.
What are the biggest challenges you have faced since your diagnosis?
I've had 7 surgeries in less than 10 years, including 4 joint replacements and a major foot surgery that left me in bed for 2 months. But the hardest part is my JRA has interfered with having children. Arthritis medication forced us to go through IVF and we now have two beautiful babies, but plans for a third have been put on hold because of my JRA. I need another joint replacement and by the time I fully recover, my JRA and my age may play a factor in another pregnancy. My JRA has made it hard raising my kids as well. I can't just sit on the floor and play or hook the buckles on their car seats or even hook clothes with tiny snaps. I have a ton of help for now but look forward to the days when my kids are a little bit more independent and can do the little things that I can't.
What are your favorite tips and tricks for managing everyday tasks?
Do what you can and the rest can wait! I still have trouble remembering that but it's a huge help when I do. And make your home work for you as much as possible. Modify anything that doesn't work for you. Don't force yourself to struggle to do everyday things or you'll wear your joints out faster.
How do you manage to keep facing forward every day?
I don't have a choice; my JRA isn't going to magically disappear. This is the hand I was dealt and I have to make the best of it for myself, my kids, and my husband. I have a beautiful life and family and I remind myself of that everyday. I have down days but I don't allow them very often.
If you could go back to diagnosis day and tell your past self one thing, what would it be?
It won't be easy but it'll all be worth it. Just breathe and go with the flow.
Do you have a blog you would like to share?
My blog is www.curlybones.com. I'm horrible about updating it but I'm trying to find the time and inspiration to write again.
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