Rheumatoid Arthritis

Parenting with Rheumatoid Arthritis

Jan 2010

I am the mother of a 4 month old boy and I have Rheumatoid Arthritis which is causing me a great deal of pain in my joints and making it challenging to care for my son. I am wondering if there are any other local moms in this network who also have R.A? If so, I'd love to connect, get advice, and find out more about how you have handled raising children with this condition.

newbiemom

Berkeley has an organization called Through the Looking Glass which focuses on supporting parents with disabilities or functional limitations. You may find some ideas and support at TLG. TLG fan

I was diagnosed with RA exactly 7 years ago, when my kids were a few months shy of turning 4 and 8. I was devastated. My father was fairly crippled with the disease, so I was expecting the worst. Let me try to briefly encourage you and give you my experiences.

1. On the illness, my treatment, and my progress:
I could barely walk or use my hands when I first diagnosed. Both feet, my left knee and both hands were pretty crippled. I decided to NOT do any medication but instead pursued acupuncture and herbs and I changed my diet radically. (My philosophy is that the drugs will always be there and I can start them if I reach the end of the road with the natural route. I'm not anti-doctor at all.) My feet and knee are now COMPLETELY healed and my hands and wrists are about 70 percent better than they were. This is in contrast to my father who tried every available drug, got worse anyway, and eventually needed surgeries that didn't work. I can highly recommend my acupuncturist/herbalist, Bobbie Lewis. She is in Berkeley, 510-540-8528.

2. On diet:
I have cut out (or back dramatically) gluten, sugar, alcohol, caffeine, fried foods, dairy, red meat. If I eat that way 90 percent of the time, I can indulge a little without too much problem. To be clear, this kind of diet doesn't ''cure'' RA, but for me it has really reduced the painful inflammation so my body can fight the disease.

3. On parenting:
This is the hardest part, but it can end up being really good. I had to be very honest with my kids about what I could and could not do. I explained to them about my illness and that I needed far more rest than I used to, so I needed their help. I made it kind of a family affair: we all take care of each other when we need to. And I have to say, they are now close to being 11 and 15 and they are awesome wonderful kids who understand how overdoing it affects my health. It also good to teach them self-care through example. The hardest person to retrain was myself. I hated myself for not being able to do all the things I wanted to do with or for my kids. My husband is amazing, though. He stepped in with the bathing, making lunches, and so on when I couldn't do it. It does get easier as the kids get older. So hang in there.

4. Final tip:
REST REST REST as much as possible. I used to keep a journal of my diet, the weather, the number of hours I rested (at night and naps), and my corresponding symptoms. When I started napping every day (a minimum 20 minutes), my symptoms improved dramatically after a first week, with no other changes. I try to get more than 8.5 hours every night and I nap about 5 days out of 7. It has made a huge difference in my fight with RA.

Good luck. I know that hearing that you have a crippling disease for the rest of your life is devastating. I really understand. But it isn't a death sentence. You can get better and be active again. Honestly. When I was first diagnosed, I never would have believed that I would be hiking and exercising again, playing with my kids, and so on. But here I am, proof that you can get better and still be an active, involved parent.

GOOD LUCK!! Mary

HI, I saw your post and would be interested in chatting more. I know what you are going through - being a mom with RA is tough, especially with infants. Email me!