I really hope this inspires you all, it did for me.  Thank you again my dearest friend, Denise, what a talent in writing you have and for sharing this great info and inspiration with us.

Help Wanted…

Last night I was watching the news and saw a story about a book: Our Bodies Ourselves, it was the 40th anniversary of the original publishing of the book. 40 years, wow, I have a copy of it and I had forgotten how much flap there was about the book back then. But there was a real bruhaha over this book and it was just a small group of women who started it. The horror of it all, a group of women, the Boston Women’s Health Book Collective had the unmitigated gall to gather information from women, about their own bodies, sharing information even Doctors were not giving their patients, and publish a book so millions of women would have access to information about their own bodies. There was a series of interviews (on the news) by many from so long ago, and some recent. Dr. Susan Love was talking about how this book was what in fact drove her when she was in medical school. As a student Susan Love was learning what was being taught to up and coming Ob/gyns, and it was sorely lacking.

This may be surprising to some, but to others, not so much. I believe the medical profession would prefer to go back to the good old days when any “female” complaint was simply treated with leaches. Fortunately, women are no longer banned from higher education allowed and vote, so it is highly unlikely that will happen. But at least it gives us a point of reference for what we are dealing with: The Medical Community.

Sometime ago I read a blog entitled: A Diary of a Dying Mom, by Michele Mayer. Michele Mayer started as a nurse, then went on to pursue a Masters and a Doctorate in Public Health, which earned her the title of Doctor. She was not a physician, but had achieved a rather lofty status, not that it helped her much. It took her over 6 years to be correctly diagnosed as having Scleroderma.

Repeatedly doctors told her she did not have this disease, and she honestly did not want it. There is no cure for Scleroderma, what it does is turn the skin into an exoskeleton, as well as vital organs, it is an autoimmune disease that starts up for no apparent reason. There is a medical term that indicates unknown origin, that escapes me at this moment…Idiopathic, is the term. At any rate, if you have the time to read it, you should read this blog. Yes, Michele Mayer died about 2 years ago, but what the lesson is: she lived, and battled the medical profession every step of the way, along with a disease that eventually took her life. Michele Mayer presented a paper detailing what is is to be a “difficult patient,” and how proud she was of it. Going against “the doctor” is not pleasant ; getting a doctor to listen to the patient is almost impossible.

SHOULD WE ALL WRITE A CHAPTER WHAT LIVING WITH HYPERHIDROSIS REALLY IS AND SELF PUBLISH IT? 

Would it help?  I CAN GET NO RESPONSE!   I have written Dr. Love about Hyperhidrosis, I have written Dr. Oz. No response. That is all I get: nothing. But I am going to keep writing letters, in an attempt to be heard. Occasionally I go back and reread Michele Mayer’s paper on being “a difficult patient” and keep on, because I can. Hyperhidrosis is still a better card to draw than Scleroderma any day of the week.

Denise

I admire Denise as she stays so strong and refuses to give up.  I also am battling with raising awareness on this, I feel like I hit brick walls daily.  No one ever gets back to you or even members wont help.  Were not asking a lot, a short story, blog on how it is to live with this skin disease daily.  We are suffer daily and why not help ourselves along the path to get better treatment, a Doctor or medical staff who are trained to help us.

I’m tired of being fobbed off with another oral med that is not even related to my Hyperhidrosis, living in a fog from the side effects or another harsh topical treatment that burns our skin.  PLEASE HELP.