Friday, December 23, 2011

You have a choice

This time last year was so hard. I was depressed. I had gone through 3 port surgeries in a month because of infections and failed ports. I felt like a human pin cushion getting poked 2-3 times a day. I had a hole in my chest carved out that looked like a bullet hole. I spent my Thanksgiving with my visiting nurse unpacking and packing the wound. One port surgery wasn't so bad but 3 in a month, in my chest, that was painful.

I was convinced at 36 that was how my life would be forever.  That's when your mind starts playing tricks on you.  Why should I expect my husband to stay around? I'm not who he married. We met playing street ball against each other in the park. I couldn't even walk to the court from the knee pain. Julia, I was convinced, was going to resent me. Missing out on a home, a yard, and other things because of this disease. My friends, I knew them through Facebook and text messages. What could I offer them? I couldn't show them a good time.

I had no hope of a brighter tomorrow. Let me tell you, that's a bitter lonely place to be.  Looking back I wouldn't change a thing. I would do it all again. What I'm realizing is in my mind I had accepted my RA to that point. I hadn't in my heart. My heart was mourning. My heart was angry. My heart was exhausted from staying strong. I was a robot. Just going though the motions.

At the end of the summer my life changed. I met Peggy. She was a ray of sunshine. She gave me hope. She was newly diagnosed. I found my strength again. She needed me. She was like a deer in headlights so scared and unsure of the path ahead. I rose to the challenge and guided her. Amazingly that last piece of hatred in my heart healed.

Suddenly, almost overnight, I changed. I found my road again. I knew my way. Now with a Facebook support group 350 strong and growing I feel fulfilled.  We trademarked a logo and the name of the group. We are raising awareness all over the world.  It was so hard for whomever in the last generation that had AIDS. No one knew what it was. They always had to explain. That's us now. The next generation, they will know RA like we now know AIDS. That's a promise.

RA can be horrid. RA can be rewarding. It's your choice. Find the answer in your heart


  1. All I can say is...You did guide me. You showed me the way... You helped me rise to the occasion. Until literally last night... my heart didn't know I was sick. I broke down for 24 hours came to my knees and sought my support group we started Squeaky Joints. I sought out you and your support..and Julie's support...I cried for a few moments and starting the mourning process in my heart. I have you in my life because of RA...and for that I wouldn't give up RA if it meant you were not going to be in it. I truely mean that. I love you.

  2. Thank you for all you do. I can't post on FB too much due to my hands lately but I do get on during the good days. You both have been such a support to so many. Bless you both! Have a wonderful holiday season ahead and may Santa bring you lots of things in your stocking including many pain free days ahead.