Tuesday, June 27, 2006


I think that, without even knowing it, we live our lives in categories. In other words, we identify ourselves with certain groups to clairfy who we are. For example, all my life I would say I categorized myself as a woman, a Mormon, and then identified with whatever I was doing at the time--a student, a professional, and eventually a mom. After I got pregnant with my son, I categorized myself as a pregnant woman, a fertile, healthy person. In fact, after I gave birth, I was surprised at how hard the adjustment was going from "pregnant lady--whoa, when is that baby coming" to "the baby's mom". I wasn't prepared for that period of adjustment, really, and it surprised me.

After my son was born, I went through some more adjustments, as you can imagine. Life with a child is never stagnate, and my classification always changes as he grows. First I was a new mom, then I was a preschool mom, and now I'm looking at being the mom of a kindergartner, a classroom mom. Those don't sound very intense, and I suppose they are more subtle in nature than some, but they are adjustments, just the same.

In January, another adjustment had to be made, and this time, it wasn't subtle, or easy, and I'm not even sure I'm there yet. I went from "basically healthy" to "wow, you've got a chronic disease nobody has ever heard of!" And I have to say, sitting at the PKD conference, informative and helpful as it was, was a little surreal. Is this my life? I kept asking myself. Is this the group of people I now identify with? I'm in this category, the one that everybody is talking about right now? Those pictures of diseased kidneys they are showing could be pictures of my body?

Needless to say, this shift feels a lot different, a lot more profound, and much more permanent. And it isn't one that I am making easily. Baby steps, right? Isn't that what everybody says? Take one day at a time....

Liz and I talked some about denial. She said she went through some denial behaviors, and I'll let her speak about that herself. I don't know that I went through denial, it was more of a "No, that's not me, I'm a healthy person, remember?" I don't know, maybe that is actually a form of denial when all is said and done.

Part of the purpose of this blog, besides hearing myself talk (write?) is to help with this transition from "healthy" to "chronically ill". Maybe the terms are too dire--Liz had told me to keep this positive. But I hope that building an online community can help everybody with their transitions, their own categorizations, and hopefully make it so we feel like being in this category is not such a scary place to be.

At the very least, maybe if we all get together, pool our money, etc, we could get a group rate and talk about these things as we lay on the beach in Hawaii. Now that's community spirit!


Deborah said...

Heather, if you don't mind my asking, how did they test for this? I have these occasional really basic physicals (weigh in, pap smear, draw blood to check cholesterol), and I always wonder if there are issues that my doctor isn't looking for. . . .

Heather O. said...


They found it from a back MRI my doctor ordered because I complained about my toes and legs getting numb on a regular basis. After he ruled out diabetes, and did a back X-ray, he ordered a back MRI to rule out spinal cord tumors that could be impinging on my spinal cord. It turned out to be my kidneys that were pressing on my spinal cord, not a tumor.

The other sign is protein in the urine. If you are having regular physicals, they are probably doing a routine urine analysis, which would catch protein in the urine. Ironically, I had protein in my urine all through my pregnancy with J, and nobody seemed too concerned about it.