Lupus Support Group

I joined MDJunction in May 2011 right after being diagnosed with Lupus, also in May 2011. Even in the short time that I have been on this site, it has become one of my greatest supports. Because I work full-time and am raising a toddler, in-person support groups are next to impossible for me to get to. The on-line family at MDJunction is there for me any time of day and night.

I am a licensed social worker who’s been working in the field of HIV/AIDS for the past three years. I spent five years teaching in Masters of Social Work programs at two universities. For most of my professional life I have been working with immigrants and refugees. I’ve run school-based programs for traumatized immigrant and refugee children in three public school districts. After 9/11, I was recruited to work with traumatized Arab, Muslim and South Asian communities. A former Peace Corps Volunteer, I served in Mali, West Africa for two years. I also spent three summers conducting cross border conflict resolution workshops in the Democratic Republic of Congo and in Rwanda. I am fluent in both French and Bambara.

I absolutely love the support and information that comes through the Lupus support group, and consider it an honor to serve as one of your leaders.

Since being diagnosed with Lupus, I am inspired to write about it and to educate people. My blog can be accessed at http://www.milwaukeerenaissance.com/PeaceOfMind/ BeyondTheAbsurdLifeWithLupus

I am 51 years old and have been diagnosed with SLE for about 16 years. It started off as just the discoid lupus and has evolved into Central Nervous System Lupus. I have had two brain hemorrhages and now have a seizure disorder. I am now trying the Chemo drug Cytoxan and hopefully this will help me with this disease.

I help with the family business by doing the bookwork but I am also disabled. I have a husband and two grown children, my son still lives with us (28) and my daughter is married and has a beautiful daughter (Lexi) and lives about 4 hours north of me. She has recently been diagnosed with lupus as well.

I have a great out look on life and I will never give up. I am truly blessed to be here and to help with this wonderful Lupus site. Thanks to all of you,

Eva

I am thrilled to be invited to be a leader on MDJunction.com/Lupus Support Group. I discovered this support group June 8th of 2011. I quickly found a great lupus support group who was kind, caring, loving, and supportive. There was an instant feeling of "family support." I was dealing with cognitive dysfunction and could barely get my words out ... and yet, everyone reached out to me. I feel blessed to have discovered this group on my first search. As I started my journey with Benlysta, June 10th of 2011, the members here literally held my hand as I walked this new journey. My husband, Jon, and I were very scared the first day of my Benlysta infusion. Two hours after receiving the infusion, we went from being scared to feeling on top of the world. Benlysta was the key to unlock my lupus brain. We had no one to share this wonderful news with. After three years of no support other than my terrific group of physicians, I turned to this new site. The team leaders and members were waiting to see how I had done. I was touched!

One thing that I know ... that I absolutely know is this ... We are human beings who need others support around us. My husband and I have found that human kindness in this group!

I feel that I can contribute ongoing educational support as well as emotional support to our lupus members. That thrills my soul! I want to give back to a fantastic support group!

Karen Black-Cook, BSN, RN

(SLE patient receiving Benlysta IV every 28 days)

Hi, I am Alison and I have been dealing with lupus since I was 16, more then 30 years ago, Finding MDJunction helped me to connect with others that could truly understand what I am going through. Lupus can be such a crazy disease that having emotional support means a lot.

Lupus is often accompanied other AI diseases. I also have APS, a clotting disease, that has caused 3 strokes, Meniere's, an inner ear problem and recently added parathyroid problems problems to the mix. Of course, there may be something else just around the corner waiting to surprise me.

Hopefully I can use my years if experience with lupus to help others just starting on this journey