So much is going on right now and even one of the “healthiest” Lupies is bracing for what is to come next. If you don’t know by now, I was diagnosed with Systemic Lupus Erthemytosis my freshman year of high school. At that time, Lupus was still sort of one of those illnesses that the average person hadn’t heard about unless they had someone in their family who had been diagnosed. The 90’s don’t seem that long ago but because of a cultural evolution, raising awareness is so much simpler.
I grew up and attended high school in the 90’s. While I was in high school, I didn’t know anyone other than my next door neighbor who had Lupus and I watched him go through so much in his lifetime until I couldn’t bear to think about what I knew was the inevitable. He had a stroke in his twenties and amputations before he reached 30 years old. I felt blessed yet guilty…. a special type of survivors guilt that I still feel like lingers today.
My high school experience was plagued with sickness, arthritis, skin lesions and emotional baggage about my scars. I felt sort of like an outcast at times during my freshman year. I had a flair pretty much my entire second semester. I remember sleeping through my freshman algebra class because it was the last class of the day. We had eight different classes and my eighth period class was with Mrs. Goff. Walking through the school and just the stress of high school life rendered me unconscious everyday in her class. She was so understanding and I appreciated her.
Sleep In Peace to all of the Lupus Warriors who have gained their wings!!
I have been living with Lupus for over 25 years! It’s hard to believe at times and I would like to start sharing more of my life and my experiences especially since I have become a mother again. After 19 years….who knew?? lol I also started taking part in a research study with other African American woman who have been diagnosed with Lupus as well. It’s a mentor/mentee type of study where we both share our experiences with each other and share how the study relationship helps us. The experience is truly one of a kind and I pray that I am able to help others as well as be helped. Until this study, I had never been given the opportunity to share certain things with another person. Why? Because I was missing the commonality that I needed with that person in order to feel like I was understood. I was missing an open, non-biased, Lupus survivor who happened to be an African American woman.
I needed to be vulnerable and not feel judged. I needed it badly! So I encourage those who are able to, sign up for different medical or non-medical research studies if for no other reason but to meet others who are like you and live near by. I follow many women with Lupus on Instagram and Facebook but sometimes there is nothing like that having someone local who you share something with.
I hope to one day get my YouTube channel off of the ground and post videos about lifestyle tips for Lupies (people with Lupus). We are often diagnosed and given so many different medicines that sometimes don’t help the initial problem but helps create other problems. There are currently no medicines created specifically for the treatment of Lupus and there is still so much that is unknown about this illness. There should be alternative treatments for Lupus and I would definitely love to be at the forefront of the conversation.
Thank you for stopping by and I hope that you frequent after today!
~Divine Opportunist
Lohnnie Green 