Vasculitis awareness month: Day 3

Vasculitis awareness month, day three:

If you read day 2, you already know I have been poked and prodded since I was old enough to remember. I still remember allergy testing with a bunch of needles when I was less than 10 years old. Nobody ever believes me that this stuff doesn’t bother me. Usually I watch. I had to hunt for a doctor who would let me see my daughter being born at least during part of my cesarean delivery, because I was still upset about being put out during my first one.

One day I was at the hospital and a doctor came in to see me in the morning. She said she had reviewed my sonogram. I can’t even remember what the sonogram was of. I said she was mistaken and that I had not yet had a sonogram. She went back to check. I was certain. She came back and again said that I had had a sonogram and she reviewed it.

If you don’t know anything about staying in hospitals, you don’t get very much sleep. They wake you up every half hour or so to check vitals, take blood, or who knows what. It’s also an environment that is not controlled by one person, such as when you’re at a doctors office. It’s many different people, changing shifts frequently. No matter how good they are, things get messed. People forget to write something down. And when you think about what doctors are doing, I will give them a pass on forgetting to write something down when they might be saving someone’s life down the hall.

This is one of the reasons I have never left family members in hospitals alone if I could help it. It’s not as much to supervise the staff as it is to be a second set of ears when people are in the room and the patient may not be able to soak all the information up, and to help out so the staff doesn’t have to stop caring for patients if I can help mine out myself. I would imagine it probably also makes it easier for patient to ask a family member for some thing than to ask a busy nurse they have to call with the red button.

Guess what? I was wrong about the sonogram. I would probably have kept insisting, until I looked at my hand and asked why there was a piece of gauze taped to it. When we took it off, this is what was underneath. Apparently, they had drawn blood in the middle of the night as well as doing a complete sonogram, without my ever having woken up. That scared the living crap out of me.

How could I have slept through this!?

Everybody has heard the stories of things getting mixed up and surgeries being performed on the wrong people or the wrong part of the body. I remember being in preop once and hearing somebody in the room next to me saying good morning to Mr. (my last name). He asked how he was doing today. I called out from my side of the curtain and said, “I don’t know how he’s doing, but I know my name is (my last name), so I’m betting his isn’t.“ (Oops, wrong file! 😳)

I do not like being put under. At some point you will hear the story of when I escaped preop before they could give me a sedative. I don’t like not knowing what’s going to happen. And I certainly don’t like not knowing that something did. Nobody told me they were going to do it overnight. The fact that somebody could stick a needle in me, and roll me into whatever position was necessary to do an entire sonogram, without my waking up… and one that was able to leave this kind of bruise, was scary.

But it happened. I believe this is the stay where we were trying to figure out why I was falling, and losing words and my train of thought while speaking. Actually, it would’ve been my second stay trying to figure out the same thing. We’re still not sure. But we got further in that visit then the first one were two different doctors told me two different reasons, and then a third one told me it would be impossible for it to be either of those and they didn’t know why it was happening.

I’m still trying to get that answer. My neurologist has now sent me back to have another sleep study, even though my pulmonologist doesn’t understand why, since I’ve had one before and we know that’s not the problem. Sometimes that’s your only choice. I have to go through whatever steps are necessary until this doctor catches up with the rest of them and stops looking for answers where we have already looked. As somebody recently told me, as annoying as these things can be, at least I’m still on the right side of the grass today. And thank God for that.

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