I was diagnosed with lupus after I was having multiple issues with my heart and bones. For almost 2 years I was misdiagnosed before finding out I had systemic lupus. It all started when I was at work and I couldn’t even walk to my car. All my bones were aching and then shortly after my breathing was severely affected. After several chest X-ray’s they realized I had liters of fluid on my lungs and around my heart and that’s when I went through the right process to find out I had systemic lupus.
This is when my life completely changed. I couldn’t explain to people that I wasn’t feeling well because on the outside I looked fine. I was diagnosed in 2013, and for the first four years every winter I had to go on disability from work because my flares were so bad. I slept in a chair sitting up for months to protect my breathing at night, and often had a home nurse come to drain fluid off my lungs. The conditions I faced made it difficult to live a full and productive life, however the “world” perceived me as being healthy because I always showed a smile. Often people will say “You don’t look sick” when I’m taking 17 pills in order to function each day.
Lupus and its treatments can impair mental & emotional health. Pain, fatigue, and other physical symptoms. Simply trying to live with pain and other symptoms every day can wear you down. One of my scariest attacks was when I got severely hit with a flesh eating disease due to a mix up with my meds. My entire body was attacked and I was hospitalized for days and the doctors had a hard time trying to figure out a solution or a cause.
Despite this battle, one thing that I’ve always tried to be extremely intentional about is maintaining a normal life.
In 2020 my wife and I decided to start the process to adopt. In 2022, we were matched with two beautiful children and then one month after they moved in we became pregnant after 16 years of trying to have a family. This has been the biggest blessing of my life to have my three children, but it has also been the hardest challenge with such a major lifestyle change. In the last year my flares have inflamed my kidneys and I’m currently In Treatment. I decided to become an ambassador for lupus because I want to show my children how to fight back when life hits you down. This is not easy but I believe by speaking out you can also encourage yourself to keep fighting. Nothing can dim the light that shines from within and living daily with routines, tasks, and responsibilities is my way of shining my light to my family.
Every day I may not feel good, but there is something good in every day. Having a good support system that helps is everything. My wife pushes me to still pursue all my dreams, and helps me make them possible. My three miracle children motivate me to Live to inspire and one day I hope they will say, because of you, I didn’t give up Dad.
The reason why people give up so fast is because they tend to look at how far they still have to go, instead of how far they have gotten. For the last ten years I’ve come far and I lean on my faith. I get up daily and I look in the mirror and speak life into my body. Spirituality brings comfort and peace and provides a place to unload my worries. You don’t have to control your thoughts. You just have to stop letting them control you. Make up in your mind that you will fight to make your life the best you can.
The best way out is always through. We may live with a chronic Illness, but we can beat it if we fight through the storms to the other side.
