Three days after, four doctors came into my room and told me that I had systemic lupus erythematosus (lupus). At the end of March, I left the hospital and went to a rehabilitation center in order to learn to walk and see again. While I was at the rehabilitation center, my walking improved but I was still having spasms, and to make matters worse, my kids were at home without me. It was terrible. By the end of April, I left the rehabilitation center with no vision, and I needed to use a wheelchair. The doctors said that I was one of the rare people who get affected in both eyes. After that, my walking did improve, but these diseases were not done with me yet.
In 2015, because of the lupus, I started to have skin pigmentation, and in 2016, hair loss. In 2017, I suffered nerve damage in both ears, causing me to lose some hearing in both ears. In 2018, I started having some really severe spasms and I lost muscle strength, so I couldn’t walk for a week. I had to go to rehabilitation in order to gain the strength to walk again.
Today, I am legally blind, but I can see shapes and I can partially read my phone if I blow up the images using accessibility options. I can now walk, but I have a lot of pain in my back and I must use a walker to walk longer distances. I struggle with the symptoms of NMOSD as well as lupus. One thing I never expected is that I suffer a lot from depression, so I cry a lot. I have a lupus flare about once a year, and I take Rituxan for my NMOSD. I have learned to live with two autoimmune diseases by doing my best to keep well. I changed my eating habits, I do not leave my house without putting on sunscreen lotion, and I rest when I need to.
I often think back to when all of this started and wish that things had been different. I wish that the doctors had picked up on the butterfly-shaped rashes when they first saw them so that early intervention would have been possible. I did not do my part either. I did not go to the hospital right away like I should have. Maybe if I had gotten treatment earlier, I would not have the bad effects of NMOSD. I never want anyone to have this happen to them again. By being a TMA Support Group Leader, I advocate for both NMOSD and lupus because these two diseases are devastating and can be found together. I have partnered with the MOG Project on two Walk-Run-N-Rolls in the DC Metro Area, and I have plans to collaborate with other groups as well as becoming a spokesperson for the Caribbean. Recently, I have been trying to start my own non-profit organization called “No More Lives”. My hope is that through my advocacy, I can reach many people who might not be able to get early intervention for their disease.
Thank you for taking the time to read my story and hopefully you now have a better understanding of NMOSD, a rare neuroimmune disease that is often mistaken for Multiple Sclerosis (MS), as well as lupus, another devastating condition that often complicates things for NMOSD patients like me.