Sunday, September 15, 2013

Should I do a Blog?

9/15/13
Had dinner with friend Russ last night..mentioned I'm thinking of doing a blog .. he urges me to do it .. could really help others with my newly discovered rare disease as I journey thru the medical system and seek recovery .. I am resistant .. do I have time for this .. a lot of research to do .. and I have other things I want to do in my life ... not become consumed with this disease. Wake up at 4 AM. Maybe
Russ is right .. I have a unique opportunity to make a difference., I am now tapping into the world's greatest doctors, hospital and medical system .. 10 minutes from my house ..John Hopkins .. and my unique disease has their attention which I can share .. and I have experience with alternative medicine dealing with two widely held medical conditions .. where I chose alternative medicine over conventional with great results -- so far. and I am retired and have the time to do this .. if I choose to focus .. and it could be great fun like my travel blogs. One issue -- how to deal with confidentiality .. have to reveal a lot of personal stuff to be accurate and useful and to not "sanitize it" (to use Russ'd expression) .. I don't think I mind this for me .. but my interactions with the Docs .. do I use there real names? .. Yes I think so .. only downside they may be less open in dealing with me if they are going to be publicly quoted ..particularly if the blog becomes popular which it could as more widespread diseases become part of the investigation and cure .. upside? .. this gives me possibly more influence with the system (which can be very bureaucratic) .. which could give me greater control - or the feeling thereof .. if needed .. which could hasten my recovery and in turn make the blog more useful and effective .. that .. and my family and friends who are hugely important part of this journey .. do I mention them by name? .. I think it's ok just use first names and not reveal any personal info about them other than their interactions with me? .. my model here is Donna Jackson Nakazawa author of the Last Best Cure..which I am reading and heartily recommend .. She uses real names and with sensitivity and discretion. I'll ask Russ what he thinks about this ..

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    1. pityriasis rubra pilaris
      http://www.skin-diseases.org/diseases/pityriasis-rubra-pilaris.html

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