Why and I returning to my blog??? Stay tuned for these posts that will explain…
I had a huge disaster over the last few weeks that has totally given a new definition and meaning to the title of my my blog, “MisdiagnosedMe.”
I have had to file complaints about violations of my patient rights (hello New England Baptist Hospital, UMASS Memorial…)….some pretty crappy things have happened to me and I can no longer just roll over, whine a bit about it on Facebook and try to forget it.. Misinformation purposely placed in a medical record is a serious violation of patient rights and can effect the health of the patient – and this info gets transferred fast throughout the health care systems…mine went to 5 different organizations in 4 days! Think of the damage that caould cause. Think of the damage it DID cause…we can no longer keep quiet about these things. Time to stop whining in forums and take real action.
Doctors are writing parody songs about people that are on pain meds for chronic illnesses – they have officially reached the bottom of the barrel of disparaging patients. This has to be shared. How is this OK?
I had a considerable amount of time after a recent serious surgery that let me examine the forum-universe of many chronic illnesses. They are all alike. All claim symptoms belong to them and their zebra illness – how is this possible when all these symptoms are part of X, or is it Z, or is it Q? I have done a brief sociological analysis of this and may have a answer or two.
I want to explore the connections between symptoms of EDS – symptoms that overlap with dysautonomia, autoimmune disorders, skin disorders, etc. etc. I would like to discern if ther is a connection – perhaps we all have just ONE zebra illness, not 4. I am hoping that my analysis (don’t with the help of anonymous survey programs) may Help illuminate this? Maybe even get someone’s attention?
And, most of all I want to hone my writing skills and make use of my experience and education, so perhaps someone out there with some “brand recognition” will notice me and recognize what I have to offer the chronic illness community. Its seems as if the harder and faster I dance, the less I am am noticed and/or heard.
Dammit. This time, I am going to be heard. Even if I have to write my own parody song about doctors that enjoy disparaging their patients, nurses that mock and then abandon their patients as they are stuck on a commode hours after a a major surgery, and hospitalists a that make up new diagnoses to include on your chart, disrespect all prior doctors’ and diagnoses and then make jokes about it right outside the door of the patients room. I promise it will be catchy.