Scott-
"calmly"... really? I do try to be as Robotic as possible with my Providers but ocassionally a sliver of humanity leaks out. The first five or six times I inquired I was pretty matter of fact. My latest exchange was not so benign. In the context of this discussion, one could easily, and with justification take some offense to the word 'calmly' as it implies hysteria. Women, historically, and most unfortunately, have been tagged as hysterical when their concerns are not addressed and they dare become emotional or upset about their treatment. IBD patients, and J-Pouchers in particular end up with very long rap sheets, medical histories filled with all of our complaints and treatments. I have a relative, a Colo-Rectal Surgeon, and she is not shy at all about referring to J-pouchers as whiners and complainers. To her I always say, have you experienced these diseases personally? Are you aware of how devastating it is to have your dignity stripped, or sense your self esteem evaporating as you retreat from your social circles and society at large? I tell her that decades of daily battle are a very damaging torture if the course of illness is severe or fraught with complications.
There are always too many moving parts with this disease, sometimes my condition can swing wildly in the course of a single day. I try to be a reliable narrator of my condition but I'm not confident that I am reliable. I'm not imagining my symptoms, and I don't think I have the mind power to manifest these symptoms upon myself out of spite or any other agenda. For example, why would my condition turn south so quickly without Humira and Imuran? I didn't imagine my burning rectum, nor did I self manifest it, so right out of the box I'm in an uphill debate with a Provider who works from his/her charts, graphs, percentages, half lives, and expected outcomes etc... My rap sheet is so long with my Providers that I hate going in there, I feel like I have no credibility anymore, and I don't. I feel I have no choice but to nod and say Thank You very much...
Just sayin'
MK