10 November 2011


I do not understand how anyone can have Munchausenby-proxy syndrome.  How can having a sick child make anyone feel like they are getting more attention?  I don't know of anything that makes me feel invisible, my time expendable, and my value as a mother reduced to nursemaid more than being around doctors.

Of all the indignities, frustrations, complications etc that Lula's complex web of medical support entails, nothing makes me lose my shit more than being made to wait for hours while being told nothing.  I am so tapped out, my wait time reserves long ago used up, that I am reduced to tears at any appointment where I have to wait more than an hour.

Thursday Lula was meant to have 2 appointments at Bellevue, one with her PNP (like a pediatrician) and one with the Orthopedist.  We arrived at 9:30am. I was told to get an ETA from Ortho and if it was going to be a while her PNP would see us first.  After 20 minutes at Ortho I was told Lula was the next patient so we should stay put.  Over an hour later and there we still were.  I started to get irritated.

The receptionist had the listless pallor of someone who hates their job and no doctors were reachable.  Finally another 20 minutes later I got an answer:  Lula was the next patient.  Still.  It was nearly noon. Lula was supposed to be home for a feed by 12:30pm and I had a phone conference scheduled for 1:30.  We had been there for 2 and a half hours and still hadn't seen anyone. 

The senior resident came out to say "yeah, sorry, things are backed up today" as though it wasn't like this every single day.  At that point I was livid.  Finally her PNP came down to the Ortho office to see what was going on.  She was more concerned that I was being difficult than why I was being difficult. Her response was, well this is what it's like and you should expect to wait for however long they want you to. This is the way it is.

Why should I expect this?  I have no idea what their reasoning is but if one of them was expected to, say, wait 3 hours to check out at the grocery store or 3 hours to go through the Lincoln Tunnel or 3 hours to buy golf clubs I think they might object.  It's not a matter of medicine, it's just bad manners. 

I can't tell you why exactly, of all the stress in my life this is the thing I truly cannot handle, but I think it is the helpless wasted time that gets to me.  Lula's (and therefore my) life is scheduled within half hour increments pretty much 24 hours a day.  I go to great lengths to maximize the miniscule amount of time she has each day to go to the park or when I can possibly do laundry or cook or run errands that to spend 3 whole unplanned hours sitting in an office where I can't even get phone reception makes me feel a bit like my life has been hijacked.  If I had 3 hours to do what I wanted with it would never be this.

By the time the doctor came in I was beside myself, bitter and full of tears.  She said something about how important it was that she see each and every patient as long as they needed and then proceeded to spend less than 5 minutes with us.  She said, "so tell me what's been going on with Lula?"  and I could tell that she absolutely could not remember Lula at all and hadn't even looked at her chart before the resident pulled it up on the computer.  I told her that Lula's physical therapist had requested supportive braces and she said we could get those and then she sent us to have casts made.  The guy doing the casts looked at my puffy eyes and said "tough day, huh" and I said "every day".  He spent more time with us than the doctor did.  We had a hurried meeting with her PNP, which I wound up having to finish on the phone later. 

I look around at the herds of other people who are there and I am amazed that there isn't a mutiny.  Either I am the most high maintenance mother ever and they have all studied Zen meditation, or they are all resigned to a life of waiting rooms. They aren't even reading magazines, they just stare blankly.  Their kids sit contorted in special wheelchairs and groan and drool. There is no anger but there is no joy either.  Everyone seems numb and that scares me, but I'm sure the doctors prefer it.

I don't want to be numb.  I don't want to be OK with other people wasting my time.  Therefore I am going to keep looking for another doctor for Lula until I am satisfied, or at least not miserable.

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