From outward appearances, Greg and I were as opposite as we could be. We met in college choir where he sang bass and I sang soprano; he was skinny and I was, well, not. He liked heavy metal music and I liked country. The list goes on from there.
When we met, he was already a mechanic but knew that the hard work would take a toll on his body, even though at this point he was still strong and healthy. His love of working on things ended up bringing him back to being a mechanic. Plus he knew that it would be a good way to support our family.
After we married, we stayed close to his family so that we could help his aunt take care of his uncle who had multiple sclerosis, and his two grandmas.
For the first few years of our marriage, everything was going great. We bought a house and had a daughter, living the American dream. He loved swimming, riding four-wheelers, biking, being very active.
In 2008, Greg started getting “bad spots” on his lower back, but since he had acne as a child he thought maybe it was something like that. We changed soaps and detergents and tried to clean more thoroughly in the shower. The spots drained so he started wearing pads so that it didn’t look like he had wet his pants.
We went to our family doctor after trying everything we could think of, but since we were uninsured, we tried to wait until the last resort. The doctors he went to would usually just prescribe antibiotics and occasionally a pain medicine but would ultimately admit that they didn’t have any idea what it was and would send us on our way.
I was taking care of Greg’s aunt, who was diagnosed with Alzheimer’s, until Greg got worse and we ended up moving out of state where I started doing elderly care.
In 2010 one of the doctors referred us to a GI doctor, thinking that since the area was isolated to this one part of the body, maybe he needed a colonoscopy. But the GI doctor looked at him and said no. He sent Greg to an infectious disease doctor to get the drainage cultured.
Within five minutes in the office, the doctor told us what we had been so desperate to hear – HS! He said Greg needed a dermatologist and referred us to one in Dallas who, according to the internet, had experience with it. We made an appointment for Dallas and I took yet another day off work to go with him.
The doctors in Dallas took pictures, poked, and prodded, and since it was a teaching hospital, approximately twenty medical students looked on.
They did lab work and concurred with the other doctor on the diagnosis but didn’t think he was a candidate for surgery. They wanted to try him on a new medicine that they were doing a study on – Humira. We had gotten insurance through Obamacare, but the doctors in Dallas didn’t accept it, so he got approved to receive the medicine for almost free.
After being on Humira for a very short amount of time, Greg started falling, forgetting, and had become totally incontinent and was wearing adult diapers. So the doctors took him off Humira and sent him to a neurologist because apparently a side-effect they didn’t tell us about was MS symptoms.
Greg was still working, but they fired him because he lost too much time from work. I ended up losing the job I had at the time as well, when my supervisor told me I needed to be more dedicated to my job. Uh, no, sorry, my husband of almost twenty years and daughter will always come first!
We left that doctor and Greg found another one on the web that had experience with HS, this one in San Antonio, 41⁄2 hours away each way.
He also started getting involved with HS support groups on the internet. He got disability (the pictures the doctors took in Dallas were beneficial). The doctor in San Antonio changed his medicine (different antibiotics), and things seemed to be stabilizing. Or so we thought.
I had gotten a job doing elderly care with a very understanding boss and I loved my clients!
In July of 2015 Greg was hospitalized with anemia and blood clots. In September he fell (some of the symptoms had gotten better but he was walking with a cane) and knocked open a hole at the base of his spine where he had a pilonidal cyst. It got infected and ended up having a wound vac for six months.
They started him on IV antibiotics, but that meant I had to learn how to give the IV each day for three weeks. We had home health but they only came three days a week, so I was left with all of his care (he couldn’t get the area wet).
Because of the difficult location, I had to know how to change the vac dressing and would often have to show the nurses how when they came.
I reduced my work schedule so that I could come home more often and be with Greg for all appointments, which were sometimes three times a week. Greg was in excruciating pain, and nothing we could do could stop it.
I had to be home to change him, clean him up, and make sure he had plenty to eat and drink while I was gone. I had to wake up at any point during the night to do whatever he needed, all this in addition to raising our teenage daughter. Needless to say, I was worn out.
After the course of antibiotics, they put him on oral antibiotics, but let us know that it was just to minimize side-effects of the infection, and that the bone infection had developed sepsis.
We started making legal arrangements, and in May of 2016 Greg started on hospice care.
They were able to give him some pain relief, but I was still the main care provider. I actually felt somewhat guilty asking for help with his bathing, but it was nice not being the person touching him, causing him pain for a few minutes. I was still there but I had some help.
On July 27th, Greg passed away. I still wake up at odd times through the night, thinking it was a dream. Greg and I had twenty-two wonderful years (not easy, but still happy) of marriage. He gave me a wonderful, talented, and intelligent daughter and so many wonderful memories!
I learned a lot over the course of his illness, but the main thing is that someone, needs to find a cure for HS so that other families don’t have to go through the pain and struggles.
Rest in Peace Greg, my love. You are entitled!
“I WILL NOT HIDE” Hidradenitis suppurativa (HS) Patient Personal Stories Volume 1
Dedicated in memory to Greg and his family
Our first release in the new book program and series of titles is dedicated in memory to Greg and his family. $1 from every printed copy will be donated to Rowland family and survivors.
“While Greg was sick, his dad told us he would buy his headstone but when he died he changed his mind so I’m having to do it myself. I’d appreciate any share so I can get it ordered as soon as possible. Help spread the word!”