One thing about Lupus is it affects every person differently. My lupus diagnosis can mean scarred lungs, arthritis, Raynaud’s disease, eczemhyperthyroidism, etc and to another person their symptoms are completely different. So hearing someone say “oh my aunts best friend has Lupus and she’s perfectly fine” used to irritate me immensely. Not that exact phrase but I promise you I have heard different variations of that throughout my 14 years of fighting Lupus.
So, I feel like God has given me trials in my life to show others of His grace. That this is where I was and I was able to persevere and heal. I am not a hero. I am not rich or living by any means a “perfect life”. But I remember sitting in a hospital bed so frail I couldn’t even sit up on my own and being told by doctors that my body was shutting down on me. I remember being in my early 30’s and my mother having to wash me and help clothe me. I will never forget where I was in my health so it makes me more appreciative of simple tasks we normally take for granted like just being able to get out of the bed.
My lupus story began when I was in my early 20s and I started having wrist pains that would limit my ability to do simple tasks like twist off bottle tops, write with a pen or type on the computer. Some days got so bad that I finally went to see a doctor about it. He just assumed it was carpal tunnel since I was working at a computer. These pains persisted though and I began having pains in my joints until I was unable to get out of bed without help. I was 23 years old. I went to tell my doctor and asked him do bloodwork and run tests for lupus. My paternal uncle has lupus so I seen first hand how debilitating the disease can be to someone. He had a stroke that left half his body paralyzed and I grew up watching my grandparents take care of my uncle. I knew my symptoms were beginning to look like things he complained about. So I also knew my pains might be related to this disease. I remember my doctor called me to tell me the diagnosis confirming that I indeed had lupus. I cried because I thought of my uncle who was paralyzed and on tons of medication, who had to fight for his health daily. I thought of my son at the time was young and I was worried for what our future looked like. At the time of my diagnosis I did not have health care insurance so each visit was costing me out of pocket and I was a single mom. I couldn’t afford doctor visits so after my diagnosis I stopped going. I figured I could take care of it myself and be seen when I needed to. I would take naproxen to get through minor pains and when they got too bad I would cross the border and go into Tijuana to see a doctor who would prescribe me a medication called diclofenaco to ease my inflammation that caused my body pain. I believe I lived with Lupus pretty non symptomatic for a long time but I realize looking back now that I would still show signs of a flare up and not even know it. Every time I drank in excess and stayed out all night my face would develop a rash. I would wake up the next morning achy and slow to start my day and associated that with hangovers not realizing that was my body fighting a flare up. I think for the most part I was managing my lupus on my own with out regular treatment from doctors or medicine. Then enter the stress years.
I was 25 when I met my soon to be ex husband. From the beginning of our relationship it was abusive but he was so manipulative in his words that I would always come back and somehow believe that I did something wrong so I had to change who I was to prove I really did love him and have his back. I broke up with him 3 months into our relationship and he showed his first sign of aggression towards me. He apologized by saying that was a show of how much he loved me. I tried to leave him alone but found out I was pregnant. This was going to be second child and by a different man. I didn’t want the association of having multiple baby daddies like I couldn’t do something right. I thought, I had to work on this relationship. So we gave it another go and we were together for three rough years before we got married. During those three years I caught him cheating on me multiple times, women approached that they were sleeping with him, and when I confronted him every time it ended with him manipulating the situation that I didn’t trust him, I didn’t have his back, I left him for dead some how every time he managed to play the victim and I needed to stick around. I can’t explain to make it seem like I wasn’t stupid because I am the first to admit I was very stupid. My common sense left my body during these years and I became a weak minded individual. I lost a lot of friendships because I was told they were trying to split us up. Truth is they were. They say the toxicity of my relationship and my ex convinced me stop talking to a lot of people on the basis that they weren’t good for me. We ended up getting married, even knowing he had gotten some other girl pregnant. We moved in together and the stress of living with a man who wasn’t working and expected me to handle everything in the relationship began taking its toll on my body. My insomnia began. My arthritis pain. Then I got pregnant with my third child. I was labeled high risk due to having lupus and had to have extra doctor appointments to make
Rosadela Durruthy is founder of She’s Got Lupus, a non profit organization aimed to improve the lives of those living with chronic illnesses by advocating for mental health, healthy living and raising awareness.