, ,

This morning there was a news story about a “Rules for Kids” book that was compiled by two young girls who both had younger sisters with which to contend. The news story didn’t cover all 187 rules, but it gave a few examples, and I was especially struck by #105 – Tie your shoes or you’ll fall down. What a wonderful way to express the old saying of Proper preparation prevents p— poor performance. (I guess it’s the “Everything I need to know I learned in kindergarten” approach.)

At any rate, it got me to thinking about rules to live by for people with RA. We all have them and, like parents with a new baby, when you’re first diagnosed, it would be nice to have an instruction manual.

Here are my top 10 rules. Feel free to share your own. Thanks for checking in and don’t forget to tie your shoes!

  • Remember, it’s a diagnosis, not a death sentence. Many, many people with RA live full, productive lives.
  • Do your research, but don’t panic. Thanks to the Internet, there is a wealth of information about the disease from medical sites as well as real-world patients. Learn what you can, but understand that each situation is different and that the worst-case scenarios are just that: “worst case”. There is no pre-defined path for disease progression or even medical treatments.
  • Find a rheumatologist whom you trust and with whom you can communicate. Don’t be afraid to change rheumatologists if you feel that your concerns are not being addressed. Your future treatment options and well-being are in this person’s care so it’s important you find the “right” doctor. Once you find that person be clear about your health and concerns. S/he can’t help you if you aren’t honest about how you’re doing.
  • Give yourself permission: permission to not feel your best, permission to not always do everything, permission to let your body rest when it needs it, permission to live your life to the fullest extent possible.
  • Don’t give up. RA will be part of your life going forward. If something isn’t working for you, try another treatment option or augment what you’re doing with other therapies such as physical therapy, massage, etc.
  • No one is perfect, but we can all be better. Do the best you can for yourself. Stress, unhealthy food, lack of sleep, and lack of exercise can increase your inflammatory response. Limit those factors and triggers. Make “being healthy(ier)” part of your every-day life.
  • Enjoy your life. It’s easy to be overwhelmed by a chronic disease. Sometimes it takes a conscious effort to count your blessings and revisit those things that make you smile. Always keep your sense of humor.
  • Share your burden. You’re going to need the help and understanding of your family and friends. They can’t be there for you if you don’t share your needs. Seek out a support group — either in person or any of the wonderful resources on the Internet.
  • Take one day at a time. Every day will have its challenges and rewards. RA can turn around 180 degrees in a matter of minutes. Do what you need to and can for today and worry about tomorrow when it comes.
  • Tie your shoes or you’ll fall down. In other words, be prepared. Your life will be filled with unexpected challenges. You need to do the best you can for yourself in order to meet them. Take your medications, get your rest, talk to your doctor, share with your friends and family. Then if you need a “Plan B” or if you actually do “fall down”, you’ll be in the best position possible to recover.