I'm Glad I Have Lupus!
Last updated: April 2022
I remember the first time I ever heard/read the word Lupus.
Looking for answers
Me and my ex-wife had just endured our 4th miscarriage and we were looking for answers. We found a really amazing doctor in Ohio who used to be one of the Heads at the Akron Children's hospital and he sent both of us out for blood tests/urine test/sperm test for me and MRI and ultrasound for my wife.
Learning I have lupus plus
After all the tests came back he informed us that my wife had PCOS (polycystic ovarian syndrome). And then he turned to me and said, "there were some unusual results in your blood work I'd like to discuss with you".
Little did I know, that was going to lead to a 3-year journey of tests and doctor appointment after doctor appointment, until finally in 2015 I was diagnosed with SLE, Rheumatoid arthritis, Crohn's, Anemia, Raynaud's phenomenon and Sjögren's syndrome. It was all very overwhelming to me, up until then I just thought that the aches and pain and stomach issues were a normal part of life and getting older!
Symptoms finally make sense
Now 6 years later things are starting to make more sense, like, why my brothers both look very native but I have always been very pale skinned which caused me to sunburn very badly as a kid. Or why my joints hurt so bad when it rains, because the low-pressure system causes the barometric pressure to drop which in turn makes my RA flare up.
The worst part about this whole journey is that if I would have known what I know now back in 2015, I would have changed my diet then, I would have exercised more, I would have drank more water and paid more attention to my body and what it was trying to tell me!
Lupus and seizures
In July of 2020 I had several seizures in the middle of the night, which was the first time I had experienced anything like that. It was a blessing in disguise because it ultimately led me to pay attention to my body and what it was trying to tell me.
Focusing on advocacy
Unfortunately, I didn't take my diagnosis very seriously for the first 5 years, which I regret! Because I have now developed Lupus Nephritis and am confined to my bed for the most part. I'm a 37 yr old male who has worked every day since I was 15 and to go from that to being bedridden is a very humbling experience!
I have taken the time off to educate myself and the people who love me about Lupus. And I have taken it upon myself to host several charity events to raise money for the Lupus Foundation and Lupus Awareness! As of today, I've managed to raise just over $1600 for the foundation and I couldn't be happier! I still have a long road ahead of me but for the first time in actually taking a proactive approach towards my health and I will never stop fighting to be here!
I have been incredibly blessed with some amazing support from friends and family and my new Lupus family and I finally realize why I was given such a heavy burden to bear. Because I'm up to the task and I have the means and platform to be able to spread awareness and do what I can to help others who are suffering, and I wouldn't change that for anything in the world!
So that's why I say I'm glad I have Lupus, not because I'm actually glad to be suffering, but because of my suffering, hopefully others won't have to suffer as much!!
Interested in sharing your own diagnosis story, treatment experience, or another aspect of living with lupus?
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?