Sunday, March 24, 2013

I woke up to a flare this morning. My entire left arm is badly swollen and this damn disease is now spreading. It's starting to wrap itself around my arm to the front of my chest. It burns badly right now but I'm just too darn stubborn to take painkillers for it. I've just gotten myself weaned off of the fentanyl patch and I really don't want to go back on them but I may have no choice.

The HS survey is complete. I'm currently in communication with a web hosting company and waiting the final written go ahead before I put my money down. They have been informed that the site may contain graphic images that others may find offensive BUT that the site is a medical awareness site. I need that written ok before I can go any further. I've been turned down twice now hopefully this will be the one.

The letter writing campaign has started to minimal involvement. About a dozen people have taken it seriously. It's a start. Next month I will write a new letter and again encourage my fellow sufferers to spread awareness. I may have to include a list of places to send the letters to.

I've got all the graphics done for the website and most of the text. Now I need stories. I'm hoping to get a few dozen people from my support groups who are willing to tell their stories. There is just so much to do and my friggen arm hurts like hell. Oh well things could be worse right?

Sunday, March 10, 2013

It's been a while

It's been a while since I posted. Things are pretty much the same. I have been getting some relief from a paleo diet. My flares are further apart and do not last as long. My derm was worried about my groin so took a biopsy. I get the results in two weeks.

I got pissed during my last flare and drafted a letter for the media. I've recruited several other HS'ers and we are starting a letter writing campaign this week. We will continue letter writing on the 15th of every month until someone hears us.

I'm also working on a website called the "Faces of HS" which will tell stories of people who have HS and how it has impacted their lives. The world needs to see the human side of this disease. I'm done, fed up and feel like I'm backed into a corner so it's time to fight back.

I'll post the letter and website link here in a few days for those who are interested.