Saw Urology at UW yesterday and while it wasnt that helpful atleast right now it may be that if this issues keep up (which hopefully it will resolve sooner than later) the urodynamic testing which isnt slated until late july/early august will tell us a little more about whats going on and the follow up with the neurogenic bladder urology specialist (this may be who my Nrsgn talked to while I was in-patient as each day she would stop by she would keep me up to date on who she talked to of her colleagues and other specialists) who apparently has alot of experience with these type of nerve-bladder related issues. The PA I saw really didnt have a good idea of what was going on so it seemed alot like most of the time was spent with my filling her in on things that have been going on and with what my Nrsgn has told me re things she was told regarding this issues. For now i'll keep cathing up to 4x's a day and otherwise going what my body will on it's own. It's always mildly (m-i-l-d-l-y) frustrating when you go in to an appt and it ends up that the provider knows very little and has no new information - we as patients already spend so much time w/providers and so add in those providers who know nothing about MPS, know very little about the issue you are seeing them for and seem perplexed and it just can create a very underwhelming feeling of why do these providers not do even a ounce of research or talking to our providers ahead of time? If you know the patient is being referred post-surgery and the surgeon has talked to one of your colleagues at the least wouldnt you try to talk to the surgeon or find out who the colleague was? I know time is limited but it shouldnt be at the patients expense...
So on that note but something ive written about before do you ever have to cringe and yet almost laugh a little to yourself at the reports some providers write? Why is it some providers can recognize a patients sincerity right away and have no problem working with other providers/corresponding say when it comes to surgeries and other providers have some form of god complex? For instance ive had a really good luck this spring with ortho and with neurosurgery - both seem to understand MPS and where open to talk to other providers/other providers talking to them. I happeneed to be talking to my pain mngmt dr the other day and it just struck me how she realizes im not just a patient whose going to try and scam you (for what I have no earthly idea!?!) and im not going to try and be somebody im not. It's seems some providers have some sort of complex with patients who become friendly with their nurses and who keep in touch with people outside of the clinic on occassion... It also seems some providers have an issue if you dont worship the ground they walk on and will take that out in very un-professional calls or reports that are very un-truthful just so they can feel better???? I happened to be reading 2 different old reports from about 3-4 years ago and was struck by the tone of the reports - comments made that had absolutely nothing to do with why I was at those appts and comments made about my behavior (because I was sick that day and was frankly very frustrated with the way the appt was going - apparently to some providers it is illegal to become emotional at appts. Needless to say I now keep my emotions in check, am very careful about what I share with who and just plain dont go in to alot of detail about my personal life bc those providers that really know me know I am very involved with the positions I have and keep busy but those occassional providers that had seen me once or twice or who had not talked to any of my group of specialists ahead of time seemed to find it ok to classify me according to their whim. Hello people is a book not read unless opened???
Anyways just my venting - will update soon - pics this weekend probably after Z's party!
Erica
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