Contemplating Fairness

The concept of fairness has been very much on my mind this week.

Really it’s been on my mind off and on since my diagnosis six years ago. Mostly, I have thought about fairness in terms of “why me?” Being chronically ill is so unfair to me, to my husband, to my children, and to my family and my friends, too.

But the fact of the matter is many things in life are unfair. Bad things happen to good people. Unexplainable things happen to innocent children. People face adversity. People face day to day struggles.

Last weekend, I got together for dinner with some friends from college. I gave them a brief update on my health. Sometimes I do not like to talk about it in much detail because I don’t want to be a downer. I’d much rather just eat, drink, talk, and laugh.

After wrapping up an enjoyable evening with hugs and goodbyes, one friend quietly said to me, “It just doesn’t seem fair.” The comment actually took me by surprise a bit. “No, no it doesn’t,” I replied with just a hint of tears forming in my eyes.

Although I sort of shrugged off her comment, it stuck with me all week long.

And she is right. It doesn’t seem fair. But really, am I the only one in this group of friends being dealt an “unfair” card?

Nope.

Another friend with us that night shared her triumph of having just completed her last radiation treatment for one cancer cell found in her breast. Another, who will have her first baby at age 43, had just been diagnosed with gestational diabetes. She also has been ordered on bed rest for other complications related to her pregnancy. A third friend who could not be with us for dinner that night due to suffering a bout of pneumonia is in the midst of divorce proceedings.

These bad things are happening to very good people. Is it fair? No. Can it be explained? Not by me.

Ironically, fairness was the Character Counts topic at my kids’ school this week. To a kid, fairness seems so simple - Take turns. Share. Play by the rules. Listen to what others have to say. Treat people how you would like to be treated. Keep an open mind and be reasonable. Consider other people’s feelings. Fairness does not mean equal, but that each person gets what they need.

Hmmm, sounds so easy. Not really. For me, perhaps one of the most difficult things about fairness is simply accepting the fact that life is not fair. It’s trying to move on from “why me?” to “why not me?”

I’m not there yet.

Breaking up is hard to do

I am doing it.
I am seeking a second opinion.

I am questioning the care and advice given to me by two of my many doctors.
I have seen these doctors for more than five years, so that's why it’s a bit hard.

It’s like a break-up.

My husband and I have been contemplating this change for some time now.
But what we needed was a little push. OK, a big push!

In fact, what we really got was three pushes. And lots of little nudges, too.

One push came from my local pulmonologist - let’s call him Dr. N. He joined my medical team last year. I like Dr. N and trust his opinion very much. He is honest and proactive. However, he is not an expert on scleroderma, and he doesn’t claim to be.

So it’s almost like a third opinion because Dr. N said it was time for a second opinion.

Why do we need so many opinions? Because it appears as though the pulmonary fibrosis in my lungs is a bit worse than last year. We were advised that I need to change to a stronger medication - one with potentially adverse effects, and maybe some unpleasant side effects as well. We were told there is no alternative.

The second push stems from our frustration with my long term doctors’ “wait and see” approach. Let’s say they seem to be more reactive, than proactive. This approach may be OK when a health problem is not very serious, but doesn’t seem quite right when the condition is both serious and progressive.

The third push came from my friend at Pulmonary Rehab. She has scleroderma, too. My friend recently changed to a different group of doctors, and has been urging me to do so for many months now. She even offered to drive me to appointments. She’s a great person.

The little nudges came in various forms. Like when one doctor did not show up for a recent appointment without much of an explanation from him or his office staff. Or when it took more than a month for these doctors to review a recent CT scan, and compare it to last year’s scan instead of one from six years ago. This review came only after contact by me inquiring about the scan, and pointing out that it had not be compared to the most recent.

Another nudge is what me and my husband call “the hurry up and wait” situation. We do our best to get to my appointment 15 minutes before it is scheduled (as they suggest on their confirmation voicemail) only to do so, then we wait, wait, and wait to see the doctor. Sometimes for over an hour!

So it’s time to move on.

We hope that this change will bring a fresh perspective on my care and treatment.

We also hope that I will receive the very best care possible. Without the wait of course.

But most of all, we hope that this change will bring us HOPE!