When I was finally diagnosed in 1983, I took some time to go to the local Social Security office to ask what was involved in disability, how to get it, and what was needed. As I sat listening to my Social Security consultant / helper, the more I realized that there was no way that I could get disability from Social Security. Because you have to be out of work for at least a year, then apply for it, then get denied, then go through several appeals, before anything ever happens. I remember as I walked out of the Federal Building in Indianapolis that day going "there's no freaking way." I know it's true that at that point I had recently been diagnosed, so I still had a relatively large denial component going on in my head at the time. So I comforted myself at the time with saying well, we'll worry about that when it gets to that point. So, I learned to differentiate new ways of determining if I was too sick to go to work or not. I used to have a fairly strict guideline with regarding missing work for being sick. Either I had a fever (which leaves my brain useless), or for various reasons could not leave the immediate area of a bathroom for the day. So I didn't really have much history of calling in sick to work. However now, as things were getting weirder, I found myself redefining the above guidelines. One day I was trying to get ready for work in the morning, and stood there in the hallway for about 5 minutes trying to figure out whether I was well enough to go to work. I had never done that before, and I figured you know, if I can't decide whether or not I'm able to go to work, I probably shouldn't drive either. So that's somewhat cinched it for that one day. It took me some years to figure out how I needed to take vacation days before and after anything that really that I really had to do, or really wanted to do. Because invariably, these were the things that would knock me flat. So now that I've been with the company for enough years to have gained enough vacation time, this is no longer a big problem, I finally have it down to a science. Because, I still try and live some life, even though I know I'll pay for that. I'm not in as much denial as I was at the beginning, don't get me wrong. However, I will take days off before an event and after an event like helping with a parish dinner, or going to a family event, like the baby shower like this weekend. I do get more upper respiratory problems, even though that history is kind of interesting. When I was a little kid, I got a lot of upper respiratory infections. Then my tonsils and adenoids were removed. From that point on I really didn't have any throat infections serious throat upper respiratory problems. Until 1979, when the rug was pulled out of me after the viral infection that started all this nonsense. However, I'm now in a situation at work where I work from home full-time - because my company extended hours, and I was the only one in my sub team that actually wanted to work the noon to 9 pm shift. So I don't have to get up early in the morning. This can come in handy if I'm still recovering on Monday morning after baby shower that occurred on Saturday afternoon. I'm lucky, I work for a company that has great insurance. Which is part of the reason I went to work for that company in the first place. And I don't take a lot of advantage of sick days either, so I still have quite a few built up. I learned how to eork sick, which can mean pain, exhauaustion, or headaches. But I'm very conscious of not calling in sick when I can sniffle and sneeze and cough at home, and not get anyone at work sick. This is a great advantage with a chronic illness, when you know that if you're having a flare-up that might put some others and some peril, you won't get them sick, because you don't work in the office anymore. So again, I'm very lucky. Everyone is affected differently, but I wanted to share my story, just as a little look into how I deal with working full-time. I worked at the office full-time until earlier this year, and then switched to full-time at home after that. Navigating the world of work can be pretty tricky with a chronic illness. And I'm not going to say that luck is not playing a large part in my ability to keep working full-time. However, I wish everyone here the ability to do what they need to do, or what they wish to do, as best they can. Because, giving up entirely isn't a great option.
