I'll always remember that my very first step at getting “Back in the Game” was accepting my doctor's suggestion to try HSS Charla de Lupus/Lupus Chat® peer-counseling program. As I reflect on my journey, I wondered can anyone ever truly be considered "back" from a chronic disorder? How can that be if lupus never goes away? There are phases of quasi-remissions, but then the disorder is always there, underneath and behind it all. My current status is low grade, mild lupus, mostly stable as long as I'm sure to pace and balance. However, the truth is that, as I live my life, I walk a very fine line constantly on the edge of lupus symptoms that may strike at any given moment threatening to completely derail regular day-to-day life. Despite the odds, I've managed to find a different way to live and make a life. Staying positive despite the very real challenges and difficulties of living life with lupus, has really made a difference. Getting to a more positive place requires being open and honest with yourself first, as well as the people around you, learning your limits through trial and error and forgiving yourself for the errors. Setting realistic expectations for yourself and others and accepting when others just don't/can't understand. Holding on to hope, having faith in yourself and even more so God's plan for you.
Almost 10 years ago, I was matched with Lillian Mendez through the CharlaLine. Our first conversation was a lifeline to start over from a different place, a new reality. Like me, Lillian had developed Lupus as a young mother and wife. She listened to me, shared her story with me and helped me put words to all I was experiencing and feeling with the onset of lupus. We talked frequently for a long time and through the years Lillian has been there for me; she is always just a phone call away. Someone who truly knows and understands everything I go through and can help me gain perspective, always from a place of strength and possibilities. Funny, when I started speaking with Lillian, my future seemed so uncertain. I had to leave behind a promising career in Advertising and only had one baby. I was sicker than I had ever been, and felt terribly discouraged. Today, I am a mother of three beautiful, growing children, completed a vocational rehabilitation program and am now back to work as an International Board Certified Lactation Consultant (IBCLC). It has taken all of these years, with all the ups and downs, to finally feel like I am truly coming back from Lupus. Even if I'm not always well, I am actively living my life in the most meaningful way I can. To me, that is what it means to be “Back in the Game” with lupus and it all started with Lillian's phone call. I will always be so grateful.