Tonight's picture was taken in June of 2009. Mattie was home between treatments and as you can see was experimenting with his googles that he just received. The googles had a straw attached to them and they were a clever gadget that enabled him to exercise his lungs post surgery. The googles were filled with so much milk that you could hardly see Mattie's eyes! Despite being in pain, feeling isolated, sad, and in many cases needing a lot of help holding, playing or using a gift..... Mattie was always a good sport and eagerly opened each of the gifts people from his care community sent him and was always gracious about each gift received!
Quote of the day: Things which matter most must never be at the mercy of things which matter least. ~ Goethe
I woke up at 5am this morning not feeling well! It was the kind of pain, a pain I know well, that wakes me up out of a deep sleep. It is bladder pain. This type of pain makes it impossible to rest, sit still, or frankly think about anything else other than seeking immediate help! So I called my doctor's nurse and left her a message, because I wanted my doctor to prescribe me antibiotics. However, when you have a chronic issue you also learn to triage yourself. So I started popping things in order to function otherwise I know that this pain will make me absolutely crazy. As the morning rolled along, I also emailed my doctor who insisted I come into the office to be seen. Mind you I just saw her two weeks ago, since she is the one who ordered me that upsetting scan. But in order to get what I wanted, I know I also have to comply with her demands at times. So it works both ways. I am quite sure that if I did not self medicate on antibiotics and other things I had at home, I would not have been physically able to drive 40 minutes in traffic to her office. I wonder if doctors even think of these things?! A patient in terrible pain.... why not then have the patient drive in morning rush hour, to come to the office to give a specimen and be seen? NO PROBLEM..... sounds reasonable, no?! I don't know what part of the brain functioning is missing sometimes from the medical profession.
If the doctor doesn't get me laughing, then her nurse practitioner had me on the floor. I left my doctor's nurse practitioner a voice mail at 5am. By the time I got home, after being seen by the doctor, the nurse called me back and left me a message. But it was the content of the message that was an absolute riot. Clearly the nurse did not listen to the actual message I left her before calling me back. That would have been step one to good patient care. She missed that step! Or she could have looked at my chart and seen that I just visited this doctor two weeks ago and had a thorough evaluation. She missed that step as well. But the final icing on the cake was when she left me a message and in the message she started talking and you could tell it was just haphazard, free flowing consciousness. She wanted me to know that I needed to come to the office today since I had symptoms and because the doctor hadn't seen me for some time, then in the next breath retracted her statement since she said..... no I see in the chart you just saw the doctor. In the second breath, she then went on to say, OH NO, I see the doctor just prescribed you something today. It was true dysfunction on the phone! To me this all could have been avoided if the nurse had taken two minutes to look up my name and check her computer screen, got her facts straight and then started speaking. It just left me with a bad feeling that people who are this scattered are overseeing my healthcare and I am reminded of a statement Jey (Mattie's CT transporter and Big Brother at Georgetown) used to say to me often. Jey would say that sometimes people working in healthcare forget why they got into the profession to begin with, but it is important to always remember that every patient means something to someone and may come into a medical setting needing support. Which is the role of the health care provider, not just to provide the care! You can see why Jey and I saw eye to eye and why Mattie related to him from the get go.
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