"Someone has a really bad sunburn!"

When my symptoms first appeared and I was prescribed 40mg of prednisone per day, my condition improved significantly. After I had tapered the dose down, I became significantly worse than I was in the beginning.

Since I experienced the quick improvement initially while on the prednisone, I expected that I would return to normal very quickly. Sure, I was worse but I was taking twice as much so it stands to reason that I would improve right away, right? That's not exactly what happened.

Even though the dose was doubled, I continued to get weaker and the rash continued to get worse. My scalp was very irritated and I began losing hair. I also began packing on weight with the prednisone.

I pretty much took it all in stride. I viewed these as things that would happen but it would all run it's course and I would get better. I didn't know that for a fact but that was the way I chose to look at things.

One thing that I never thought about in the beginning was how people viewed me when I went out in public.

Even before I began losing my hair, the rash was pronounced and would garner double takes and stares. On one occasion while out to lunch, there was a table of young business men who had a great time laughing and joking about the way I looked. I don't think they realized I knew they were laughing at me, but I have good hearing and I'm pretty observant.

I really didn't mind the double takes and the stares. I wouldn't have minded a question about why my face was red but I was never one to approach a stranger and ask them about a condition so why should I expect that. After the incident with the men in the restaurant, I considered printing some cards explaining my condition with a line on the bottom telling whoever I gave it to that they should consider that a person may have a medical condition that makes them look funny before they act like a bunch of dickheads in public.

I didn't print the cards but I enjoyed thinking it up and all the insults I could add. :)

With two children in elementary school at the time, there were visits to the school every so often. Once while picking up one of my kids for an appointment, a fifth grade boy who was working in the office as an aide came to the counter and said, "Someone has a really bad sunburn!" and he smiled at me thinking I really had a sunburn.

I smiled back and said, "It's not a sunburn. I have a condition that causes my skin to get red like this, but don't worry, it's not contagious."

The smile on his face was replaced with a look of concern. He said, "I am so sorry. Does it hurt?"

I said, "You have nothing to be sorry for. I can see why you thought it was a sunburn. It's a little sore, but I'm OK." I smiled at him again. He smiled back and I left with my child for our appointment.

It struck me how sweet that boy was and how much concern he had on his face when he found out I was ill. Those were the questions I didn't mind answering.

I've mentioned the rash quite a bit and I'm sure it's hard to imagine how it looked. I only have a few pictures with the rash and I have been reluctant to let anyone see them, but I decided I should post one so anyone reading this can see what I am talking about.

This picture is prior to the time I lost most of my hair. It was beginning to thin, but it isn't really obvious.