Essentially, I’m a workaholic with Rheumatoid Arthritis and also Pancreatitis. Both are auto-immune diseases which means that my body is attacking itself. I’m on a quest to find out why or rather how to turn this around to create more positive energy in my life. But maybe that’s not what it’s about at all. Maybe it’s just 2 diseases that came at me for no real reason. I’m certain it’s changed my relationship to Jax. Some of my guy friends have confessed they never could have stuck around. But it’s still hard to not be cheery and happy and know you’re so down that day or week or month. I don’t know how Jax does it but one thing is I refuse to see myself as a sick person. That helps a bit except when I have to crash or he wraps up my legs and puts cream on them to soothe the pain.
This whole site is devoted to my battle with these issues. And I love sharing my information about what these diseases and medications do to me personally since I know a lot of doctors don’t seem to get the big picture about our whole bodies. I feel like we’re still living in the dark ages of medicine.
I love my work and only wish I didn’t have to do as much for my clients so that I had more time for my own company’s projects. I speak publicly to teach my trade but lately i’ve been asked to come and tell my story. The thing is this: I’ve never truly let this illness/disease get me down. I keep on going despite the sometimes life-threatening odds. I’m on a diet after the steroids (Prednisone) and not sure if I’ve lost more than 2 pounds in two weeks. I weigh in tomorrow and I’ll find out. The only place I really allow myself to express the hardships is here on this site.
The rest of the time I battle to not let it interfere. That goes under the header I wrote before called “Hiding the Pain“.
I got my pancreatitis intrathecal pump refilled last week and now inject myself twice a week with the Enbrel. I can tell that it’s working. I get my pump filled every two months. There’s so much maintenance between the pharmacy, doc appts and offices, and charging back to work through the traffic.
I’m 2weeks on Enbrel and it’s really helping, but I have temporarily lost my Sundays to recovery and sleep. I have no energy right now and I feel like i’m barely squeaking by. I’ve recently hired 2 new teammates to help me get through this stack of overdue work. I’m just going through a new medicine and it’s always been hard on me. I haven’t felt like writing since I truly have no energy. For now, just being is enough.