Sunday, March 7, 2010

Strength vs Fear

I ended an earlier post by saying that I did not want to stop moving because I was afraid that if I were to stop, I would never move again.

My friend Grace (be sure to check out her blog ) made an interesting comment, "Amazing... you hit on something that makes me wonder... when friends, peers, family say to one that is going through a difficult physical sickness... and we say how strong you are... I wonder how often the person that is going through the sickness thinks we are crazy as they don't feel strong. But instead of feeling strong... what they/you are feeling is fear... of stopping and perhaps never moving again."

This was thought provoking for me. I started to think about everything I had been through how scared I actually felt during the course of this battle.

For me personally, I don't really think I was scared most of the time. There were events that would occur or things I would learn that might worry or scare me for a bit but overall, I think I just plugged ahead.

I am a pretty logical thinking person for the most part and I don't let my emotions rule me most of the time. I look at a situation and I do what I think is necessary to bring it to a conclusion.

The moments of "fear" I experienced were short lived and I think were born from the lengthy nature of the battle and the fact that there was no definite end date.

The fear of not being able to move again was not a palpable fear but more a thought in my head that told me I can't sit down and I can't let this beat me. Life must go on and it will go on as normal possible.

I never took the time to think too much about what could happen. I just pressed on as we all must do no matter what it is in life we face. I don't consider that to be strength and I don't consider that to be fear. I call it survival and we all must do it even if it is slightly different for each person.

Thursday, March 4, 2010

"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.