To Be a Warrior

To be a Lupus Warrior, is very hard. I guess we are called Warriors because all we do is fight back against our own blood cells attacking our organs. But what most people do not understand is how much a patient is really affected.

Feeling gaslit

Generally for years the medical professionals make us feel as if we are losing our minds. They continue to tell us that we are fine, or they treat the symptoms not the actual disease. I was diagnosed over in 2014. Almost 12 years ago. I remember how angry I was when I continued to request test for Lupus, because my sister had been diagnosed in 2011 with Lupus.

I remember her telling me to not forget to tell the doctors she had it because I was showing all the signs and symptoms, the last time I went swimming outside or on a boat was in 2014. I was laid up on the couch for 2 weeks after that boating trip. My fingers would turn white or purple when cold air hit me. I was having serious shoulder and joint issues along with Scoliosis Spinal Stenosis Hill Sachs Deformity Sjrogens but it wasn't until I begged my Orthopedic Surgeon to perform the correct blood work for Lupus, until I was heard.

No one would listen

I found it very sad that none of the other specialists I was seeing would listen to me. My ortho ran my blood and referred me to a rhuematolgist to assist because he LISTENED to me when NOONE else would. I took over 3 years to get a single doctor to order the lab work, I'm sorry but that's sad. My kidneys were not functioning correctly either they discovered and the damage that occurred is irreversible but they don't care.

I ended up having 4 shoulder surgeries over the years and was being filled with opioids. I became addicted to the medicine and had to seek professional help to assist with addiction. I truly believe the opioids were causing my Lupus to get worse. I didn't discover that opioids lie to us, manifesting higher levels of pain then the pain we would naturally feel.

In Remission

From 2019 to 2023 I believe my Lupus was in remission. I suffered another shoulder surgery which I healed PAIN PILL FREE. BUT...the trauma from the surgery caused a flare. I have had signs of active disease activity since the surgery. My ANA antibodies were present from 2014 to 2019. The remission was short lived but nice. I try to remind myself how blessed I am today to be here and still able to care for my grandkids.

Never stop the fight

Life as a Warrior is definitely a fight. Unfortunately I feel our fight is mainly with doctors that are under qualified and ready to discount everything they see in the labs, or they don't order the proper lab work in the first place. I don't know if it's because of ignorance or they think we don't know our own bodies! It is sad that our own bodies fight itself whiel we fight for someone to listen to us! My suggestion for anything fighting to understand what's wrong with them to not give up, keep fighting and remember, you know your body better than anyone else knows it!

I have a Tshirt that says I don't look sick and but you don't look stupid and I am going to wear it to the new rhuematolgist that I have because they are trying to diagnose me....which is ridiculous but they found APS which is a blood clotting disorder associated with Lupus