If I Could Have One Wish – It Would Be Not Normal

Magic lamp

Last night I had a dream that I found a bottle in the sand and the Genie gave me one wish. I wanted to wish for an end to Primary Immunodeficiency, but she would not let me. Anyway, I woke up before I got my wish, but I know what it would be. A combined medical practice, managed by our Immunologist that included, a Gastroenterologist, an Endocrinologist, a Rheumatologist, an Internist, a Cardiologist and a Gynecologist, all who were trained in how their disciplines interacted with the  immune system. If I could add a Geneticist, that would be perfect. If they all drank coffee in the morning and talked about our kids and knew that when the normal tests return with no results or normal results, that things are still not normal. That sometimes normal tests don’t behave normally for a kid with PIDD and that doesn’t mean that the pain isn’t real. And that they don’t look at you and your child like just maybe you are making this all up.

 

Is it horrible to pray for abnormal tests? I do it. When Courtney has been suffering for weeks on end and we go in so she can swallow a camera, I pray it actually finds something. Anything so that the doctor doesn’t look at me like, “Are you sure she really feels as sick as she says she does, because well, the tests are normal” I cannot tell you how I despise “Normal”.ow their disciplines interacted with the immune system. If I could add a geneticist, that would be perfect.

Our new Endocrinology resident told us that Courtney couldn’t have an autoimmune problem because her “honeymoon phase” of type 1 Diabetes has lasted so long, that it just isn’t “normal”. “I have never seen anything like this, if it was autoimmune, it would have progressed by now.”

So, he took six tubes of blood and called in three days, “Mrs. Mulloy, I think I was wrong, I think it is autoimmune because now she not only has abnormal insulin, she has abnormal thyroid and that could be autoimmune also.”Unfortunately, because it wasn’t “Normal” he didn’t bother to run the one test our immunologist really needed. But, after the thyroid test, he wished he had. So, we went back to the lab for more blood on another day.

I relayed this conversation to our immunologist, who lowered his head and sighed, “It amazes me that a physician can get that far along in his training and still have so little understanding of the immune system.” In the end, the answer may be that we are 3 to 20 years away from knowing what all this really is. That seems like a lot of years of having not “normal” tests.

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