Pred Blues

Hello friends and followers.

I’m sorry we haven’t been in touch much lately, but those of you on the drugs we like to take to stay alive know the pain in weaning pred. I’m there right now. Trying to get enough strength to push through the day, but I continue to scheme and plan and work on getting the word out and increasing awareness to a point where there will be a will to change the status quo.

I still get riled up when I see news stories that could be talking about autoimmune disease and raise that ignorance out of the tar pools that it’s stuck in. Yesterday for instance I watched a story on the news about the chemo so many of us know so well – cyclophosphamide – and how it was watered down at some pharmacy and the people it affects. They mention the usual suspects that we all know about, the few cancers that use it, but nothing about the number of autoimmune patients that have to take that wretched drug, and take chemo for life. (side note: cyclophosphamide (CTX) is known to cause bladder cancer, so here we are taking a drug for a year to keep our immune system suppressed but there is a high probability of contracting bladder cancer if you don’t flush gallons of water through your body daily to avoid having the metabolized by-products of  CTX linger in your bladder and lead to a whole new set of problems)

Until I got sick with Wegener’s, I had no idea that chemo is used to treat autoimmune disease. Not a clue. It was like a slap in the face when they told me the treatment. It is time that everyone knows. It is time to make a difference. I’m putting this chart here again just in case you haven’t seen it before. I’m not trying to take anything away from any other research, I just want those researching various autoimmune diseases to start sharing and pooling their knowledge and already existing research. We have been so segregated from each other that I believe the answer is just below the surface and it wouldn’t need a whole lot of scratching to find it. Once found we can not only help us, but millions of others suffering a bunch of other diseases and our sad sad health care system. It really is a win win, and it blows me away that people aren’t all over this.

Together we can make an insanely huge positive change for our world. But we have to work together.