My name is Jason Graves. Born & raised in Columbus OH. I’m married with 2 kids. I’m 41 & I have lupus. I’ve had lupus since I was 17, a senior in high school. I started getting sick in January. I was unable to hold anything down, including water. I became real weak. Started losing my hair. I had diarrhea. I was losing weight fast. So I went to Grant Hospital in Columbus OH. I stayed there for about a week & a half. They ran about every test they had on me. I was getting weaker & weaker. When I left the hospital I was worse off than I was when I entered the hospital. They said it was just a virus & it would pass. So my mom took me to Nationwide Children’s Hospital. We met with Dr. Robert Rennebohm, a rheumatologist. We told him all my symptoms & he diagnosed it as lupus. So I was hospitalized again there. He basically ran most of the tests that Grant did. After the tests he confirmed that it was lupus.
Since my diagnosis I’ve been through a lot. I’ve had 2 kidney biopsies, been hospitalized more times than I can remember. I’ve taken a lot of drugs, including an IV medicine Cytoxan, which should’ve made me not be able to have kids. I’ve had a central pick line (an IV that you wear at home for IV meds given by a home nurse). I’ve been through physical therapy 4 times (3 aquatic, 1 land). I’ve been diagnosed with depression, fibromyalgia, gout, sleep apnea, kidney disease & rheumatoid arthritis. I had diabetes for a while. I’ve had massive weight gain & loss. I’ve had hair loss. I have a compression fracture (3-4 of my vertebrae bones are soft & are crushed against each other) in my lower back due to all of the prednisone (steroids).
I’m a stay at home dad now. I used to work at GAP online as a Fraud Specialists. I had problems looking at my computer screen all day. I started getting headaches & blurry vision. Also, I had problems sitting & standing for long periods of time due to my back. I lost my job while I was on leave. I had to stay out longer than my short term disability & my Dr didn’t want to put me on long-term disability at that time. GAP told me if I ever wanted to come back that I could since I lost my job due to being ill. I really wish I could. I loved my job & coworkers. It wasn’t hard at all & I was good at it!
Lately my depression has worsen. It bothers me that I stay in so much pain that I can’t do a lot of things with my kids. It’s hard to do things around the house without a lot of pain & fatigue. Being home on a regular basis makes me feel useless & a burden at times. I used to be the go to guy in my family. Now I feel bad if I have to them for anything. All in all I’m doing ok. My kids are healthy & active. I am afraid that they may get lupus since I didn’t show signs til I was 17. I’m in a good place with my health. Haven’t had many hospital stays lately. My lupus is sort of in remission. I’m only having major problems with pain, a little swelling, stiffness & not having an appetite. I can’t eat when I’m in pain & I stay in pain. I usually only eat once or twice a day. Sometimes I don’t eat all. Not eating helps with weight loss tho…lol.
I hope my story can help someone through this awful disease called lupus!