I’ve become a member of a community of health advocate bloggers at WEGO Health.
WEGO is a site for people like me, who are working to get information about living with health challenges and issues regarding access to care in our communities and to the general public. It also serves as a way to use social media to connect our message to health professionals. Part of WEGO’s mission is to help me become better at what I do so that I can reach more people. A recent topic of discussion was, “What three fortunes would you give to your community about their future?” Ankylosing Spondylitis takes twists and turns in our lives, so I can’t say what specifically may be in store for you, but I can share with you a few insights into how the “three fortunes” I’ve choosen may make the journey with AS seem less frightening.
Fortune one: Is broken open while you are going through test after test looking for answers and it says, “The human spirit is stronger than anything that can happen to it.” This seems very difficult for you to believe right now, but I want to assure you that it is true. You will get past the worst of where you are right now. And the fortitude that you will possess in the future will astound you and make you a better and more empathetic person. “True contentment comes with empathy.” – Tim Finn
Fortune two: Is ready for you when you receive your diagnosis. It says, “Your pain is the breaking of the shell that encloses your understanding.” No, you weren’t crazy and the pain is physically real, but so much of what you are experiencing is the pain of loss. Loss of “the you” who didn’t have AS. With this new understanding you begin to see that there is no easy fix; there is no cure. Your new understanding grows and will crack through you with anger and denial. Eventually there will be some acceptance. That is the important thing to remember about this fortune. Your spirit will overtake the despair and you will learn to live with who you are now. This one isn’t easy – I still have times of anger and denial, but mostly I’ve learned how to make peace with my disease. Now I truly believe that I am who I am because of where I’ve been and I wouldn’t trade my life or experiences – it just is.
Fortune three: Probably the most important of the three fortunes says, “Be assertive when decisive action is needed.” This is something that a spouse or family member can help with in the beginning because you are just barely managing – which makes it difficult to self-advocate. Until you find the medications and methods to feel better, become as educated as possible about your disease so you can make the best possible decisions about your care. Your choices are what will be best for you when you find the right health care team. If one doctor doesn’t seem right for you then move on. Doctors don’t necessarily have all the answers. You need to have the information at hand. There are so many ways to have an arsenal of information (yes, it is ammunition) because you are fighting for your well-being. Get online, check out spondylitis.org and join – it is worth the membership fee and the money helps them help you. Go to the forums and to Facebook and venture into the world of Twitter. Don’t be afraid – there are people out there ready and eager to help you. We’re all in this together. Stand Tall – your future is bright!
Day 123 was created with india ink, watercolor, and a few fortunes! I made the fortunes out of strips of paper that I just attached by the edge of the cookie so the original has the fortunes in 3D – wish you could see it better 🙂
***I can’t help but include these links – just for fun!***