Before Lupus my life was very different. I was different. Everything was different and not just for myself, but for my family and friends. I have two beautiful children, I have been married for twelve and a half years to a disabled veteran, and my family means everything to me. Before Lupus I was physically able to do anything and my body allowed me to do all these things. Looking back I really didn’t take time and slow down or appreciate all of my blessings in life. Living with Lupus has slowed me down. It has impacted me both negatively and positively. I believe everything happens for a reason and God has a plan for all. Lupus is apart of my life journey and my story. I have to find the positive in having Lupus and sometimes that’s hard. I’m no longer in a race with myself. I now can see and appreciate the small details of life; that I once was too busy to even see. I would have never imagined I would be the one who would need to be taken care of by anyone or to even need help getting out of bed. I struggle with my pride at times and it’s hard to admit or accept that I can’t do certain things because of my disease. Lupus has definitely humbled me as a person and has open my eyes; and has completely changed my overall outlook on life. Before, it seemed nothing could hold me back in life, until Lupus did.
In October of 2017, I had my first major flare up with Lupus. They mis-diagnosed it for Shingles. I had no idea what was going on with my body at all and it was very scary. My husband was in a facility for PTSD and would be there for six months. I was a single mom, for the most part, but I was used to that, having been through several deployments.
I was at my mother-in-law's house visiting her when I woke up one morning with a fever and a weird rash on the right side of my face. I took Tylenol and like most moms, I told myself I don’t have time for this and went about my day. As the day went on I got worse. I went to sleep and the next morning the rash had spread all down my face and into my hair and it was extremely painful and swollen. It got so swollen that my skin began to split on my face. I again took Tylenol and put cream on it and told my mother-in-law if it didn’t look better or if I didn't feel better by tomorrow I would go to the ER. Well, the next morning I couldn’t get up. It was beyond bad. My fever was extremely high, my face was extremely swollen and everything hurt, especially my lower back. Mentally, it was like I was in a severe foggy state. The side of my face and head were so swollen you could actually feel the fluid in my face and scalp. It was like nothing I'd ever seen or been through before. My entire body was swollen. My mother-in-law rushed me into the hospital and I was immediately taken back. I was admitted to the hospital for Shingles. My kidneys were not functioning properly, I had an infection that had gotten into the skin where it had split open from the swelling. The infection was spreading to my brain and it was very serious. I didn’t even know where I was or what was going on. I was in ICU and once they got me stable I went to a regular room. Again I was mis-diaganosed me with Shingles. The rash and the symptoms kept coming back and my entire body was swollen. I had to go home on a PICC-line and conduct treatments. It came back several more times and accompanied several hospital stays. Still they said it was Shingles. I kept telling everyone that I know this is not Shingles . Shingles is contagious and noone around me has become ill. Also shingles doesn’t usually target a 35 year old and it certainly doesn’t keep coming back every week or so. I was beyond frustrated and severely depressed. My hair fell out completely on the right side of my head. My face was scarred and damaged. My self esteem went to complete a low. I gained 30 pounds in a matter of a few months from the steroids. When I looked in the mirror I felt I was looking at a woman I didn’t even know anymore. I had to depend on my friends to help with my kids and to help me during all of this. I have almost died a few times from this disease. I had to lean on my friends to help care for me. My husband was in the hospital focusing on his recovery. I had no choice and needed help from others. I was no longer the one taking care of everyone and became the one who needed to be cared for. I had to figure out what was wrong with me. I knew something was very wrong. They biopsied my face to see if it was Cancer; and it wasn’t. I felt like a lab-rat at this point and Completely Hopeless. Finally after several different doctors, several different hospital stays, and tons of tests; someone decided to listen. They ran all kinds of tests. My ANA came back positive, blood test showed I was anemic, had elevated ESR and CRP levels that indicate inflammation in the body. I finally had some answers. I was diagnosed with Lupus and Rheumatoid Arthritis. I was happy to have an answer, but so devastated with the result. I realized this wasn’t something that was not just going to go away. This disease would be attached to me for the rest of my life. Life would never be the same and I would never be the same. I knew nothing about Lupus or RA. What I started to read was terrifying. I had this idea that because we knew the diagnosis now that we could somehow fix it and I would just be on medication my entire life. Boy was I wrong. I have tried so many different treatments and medications that had worked for many other Lupus patients, but not for me. I still struggle to keep my Lupus flair-ups at bay. I still have have frequent hospital stays and we are still trying to find the right way to handle my illness. My kidneys are a very big concern. Lupus is a everyday battle. One day I will feel perfectly healthy. Those are the best days! I love those days! Then sometimes next day, I can hardly get out of bed and struggle to get my pants on. I have been in the hospital to many times to count. I have a team of doctors I see regularly and that work together to help me through this. I don't know how I would have made it through this without some of the beautiful people God has blessed my life with. A special thanks to Stephanie, Mama Sherril, and their family. I wouldn’t be alive right now if it weren’t for you. Thank you to so many others... you know who you are... from the bottom of my heart you all are what’s made living with Lupus brighter, funnier, and make it possible to keep going. You all have carried me through this and continue to carry me through this. I thank God several times a day for the people in my life.
I am still trying to figure out what will work for me and I’m not running a race to figure it out either. “One day at a time” is now my moto. I hope we find a cure for this disease, because I would never want one of my children to walk through this. Help me fight to end Lupus. Together we all can find a cure!