It’s never just a “common cold,” is it?

Well, for some people, it is. But for many of us lupies and people with other orphan or rare illnesses, the “always sometime new” often turns out to be something so very new that there’s little research, let alone any treatment for it. My latest diagnosis, which will mean that I’m going to begin a long course of a very powerful immunosuppressive drug, is an example of this. There is only one lab in the country that runs the particular test that ferreted out my latest problem, and very, very few docs know anything at all about the condition. There isn’t a “sure” treatment, nor is there a definitive way to know what to expect.

Yup, it’s like wading into unknown territory.

So, how do you prepare for something like this?

Truth is, you really cannot prepare. But I’ve found it helpful to develop an approach that at least gives me some clarity of the situation and how to deal with it.

1) I ask each of my docs involved in the situation to explain what they know, have seen, and expect from the diagnosis and treatment.

2) I research – using reputable websites! – as much as I can about everything from the lab tests involved (and how they’re “read”) to any published literature, including studies

3) I ask my docs how many other patients they have who have what I have. It doesn’t violate patient privacy for a doc to tell me, “I have a few patients (or 5 or 6) who are currently under treatment). This helps me get perspective on numbers. I also ask about what tools (tests, labs, etc.) they’ll use to determine how my treatment course is progressing (or now).

4) I get my doctors to talk to each other and share ideas and knowledge, so we’re all on the same page. Good docs will understand that they’re learning too, and the better they learn, the better and more effective they’ll be.

5) I lift up the situation, including the complete unknown qualities about it, to the Lord. Yes, I recite the 23rd Psalm. But more than that, I especially pray for wisdom for me and my treatment team, that we’ll be guided in the right direction for my benefit and that of other patients living with the same thing.

Hearing, “We don’t know much about this condition” or “There isn’t any definitive research about this,” can be frightening, especially as we live in a society where science is expected to hold all the answers. But with God, we need not be afraid.

Steady and strong – this is our God, and this is our life with God.

Blessings for the day,

Maureen