A year ago in April I was diagnosed with a disease that changed my life. This disease is known as Lupus. It’s been a big weight that has been planted on my shoulder, and i’m not afraid to admit that it’s been tough and a hard fight so far.
For those who may not know what Lupus is, here is a definition: Lupus is a long-term autoimmune disease in which the body’s immune system becomes hyperactive and attacks normal, healthy tissue. Symptoms include inflammation, swelling, and damage to the joints, skin, kidneys, blood, heart, and lungs.
It’s a daily struggle that includes a lot of pain and tears. There are days where I can barely get out of bed. There are days where I can barely move my fingers due to the servere pain my joints. One of the main reasons it’s taking me so long to write on my posts, I have in my drafts at the moment.
I decided to sit down and talk about my disease because I don’t think many people express and open up about exactly what they go through. It is hard to talk about and it tends to make my family and myself cry just talking about the impact that it has on a my life.
A year ago I was a normal 23 year old girl. I had a good job with the county and made good money I must admit. I enjoyed my job, loved my boss, loved my coworkers and the children I worked with. That great life was turned upside down when my results came back saying I had Lupus. It explained all the joint pain and the rash I had on my face. What 23 year old me least expected was the turn the pain took from April of 2018 to August of 2018.
In August of 2018 I had to resign from my job as a bus monitor for Orange County public school. The pain in my fingers and knees alone prohibted me from bendind down and lifting children onto seats. Buckling in special needs students wheelchairs and so on. Adding on the heat, it just made it feel impossible. That was one of the most emotional days of my life.
To be honest since that day, I have felt lost. I’m not sure what to do. To fill up that lost time I binge watch tv shows, I attempt to play video games but even that has become hard. I try to talk to friends online but even they have lives, so in the end I feel alone.
For a source of income I work part time at a church. On Wednesday and Sunday’s. I have been doing it for years and even at some points I think to myself. I don’t know if I can keep doing this.
I smile and put on a brave face but I’m terrified. I see all these men and women working and I’m not sure how they do it. I am so proud of them
I am working through these tough times and fortunately I do have work at that church and coworkers who support me and pick me up when I am feeling down. I just tell myself it’s a few hours a week. I can make it. I also just recently began babysitting a little girl. She is two and honestly a great toddler. She is very independent and willing to learn new things. So she makes the days fun at least.
This disease makes life a struggle but I am pushing through the best I can. To all the men and women doing the same. Keep it up. We are Lupus warriors and Strong.