Back Again

I haven't been on this site in 2 years because I was putting in a lot of time and energy into the site and no one was responding. As you know, managing a chronic illness takes time and energy. I've learned that energy is my most precious commodity so I'm really picky about what I spend it on. In the last 2 years, I've been diagnosed with 2 other rare diseases. Gastrointestinal autoimmune dysmotility disorder (GADD) and Morvan's Syndrome. GADD is probably a by product of of EDS no one really knows. Morvan's is an extremely rare autoimmune disorder. I'm actually the only female who currently has an active case and there has been only 60 in history mostly men. Managing EDS with these has become a challenge.

Recently, I've received several emails asking about my journey. Here are the things that I have discovered are the foundational things in managing EDS.

1. Build a good medical team that you lead. Always be your best advocate. Remember that you know your body better than anyone else.

2. Live a healthy life. Find a diet and exercise program that is appropriate for you. Find a good PT who knows EDS who will put a good regime together for you.

3. Find a really good counselor. Personally, I don't suffer from depression but, having someone who is unbiased and always on my side who I can say whatever I want to, has been the best decision I ever made.

4. This sounds counterintuitive but stay away from support groups. I can't stress this enough. I have tried a few but have never found one that doesn't focus on the negatives. They tend to be places where people whine and complain with little positive outcomes. If you find a positive and uplifting one, let me know!

5. Remember to laugh and love life. EDS is something you learn to live with. Give yourself grace. Allow yourself to be human. Take life in small bites but make sure you keep enjoying the buffet that God has put in front of you.

My husband and me on top of the Eiffel Tower December 2019