My Lupus Story
My name is Ally Gomez….and I am diagnosed with Lupus.
I had never heard of the disease and probably you have not heard of it until now.
There are various types of Lupus, but the one I have is Systemic Lupus Erythematosus, which is an autoimmune connective tissue disease that can affect any part of the body. In summary, my immune system attacks my body cells and tissue, resulting in inflammation & tissue damage. SLE most often harms the heart, joints, lungs, blood vessels, liver, kidneys, and nervous systems.
I was diagnosed in August 2010 and got a second opinion, all pointing to Lupus. It all started after I returned from a trip to Disney. I had spent every day out in the sun for hours and well Lupus patients should not be out in the sun. I started to get joint pain in my hands and then it made its way up my arms and eventually spread throughout my whole body. By the time the pain was horrible, I was immobile. My mother had to pick me up from bed, bathe me, dress me, brush my teeth, and move me to be more comfortable. I lost 15 pounds and for a whole month I was in and out of the doctor’s office trying to figure out what was wrong. Once I got a fever of 105, a swollen eye and the pain was unbearable, I ended up in the Emergency Room. In the ER, they were perplexed as well but were eventually able to diagnose it as Arthritis but suggested I see a Rheumatologist because it might be more serious. And it was.
There is a lot that happens with Lupus patients and one of those things is a complete 180 on your life.
Sometimes, I have to cancel on people because I cannot get out of bed, my body is just too weak. I want to go but my body cannot. Sometimes, I start a project and I do not finish because I get headaches or once again my body needs more rest. Sometimes, I cancel outings that take place outside because I will get a flare if I stand out in the sun too much. Sometimes, I ask if a place has an elevator because stairs have become my enemy. Sometimes, I forget simple facts or totally blank out. Sometimes, I get depressed and I cry. Sometimes, I carry a cane to help me walk. Sometimes, I feel misunderstood.
Everyday, I have pain. Not horrible pain, but pain nonetheless. Everyday, I take medication. Everyday, I have to weigh every choice by how it will affect the rest of that day or week.
But everyday, I feel loved. Everyday, I have love ones who support me 100% and are taking this journey with me. When I am tired, sick, sad, they are there. Everyday, I laugh. Everyday, I thank God for the day he has given me.
Please keep my family in your prayers because they are going through this with me. Also, your words of encouragement are always welcome not just for me but also for my family.
Thank you for reading this and for your love and support.
4 thoughts on “My Lupus Story”
I am the mom of a recently diagnosed lupus daughter. Thanks for sharing. You are in our prayers.
Plz tell your daughter to be strong and never give up! The path may look rough but with a great support system and a little bit of courage you can go a long way. Your family is in my prayers.