Thanks Original for the response, here is my logic....PG reacts to Trama to our skin, so if they are scrapping me until I bleed wouldnt that be considered trama? like MAJOR trama? Causing a reaction of my PG to flare and making my wounds grow larger? I asked one of the girls who wrap me every week if she has ever seen anyone else that has came into the wound clinic with PG...her response...No you are our first, well guess what I feel like a little rat in a lab to them, another thing I notice is I do know more about
my disease than they do, they show daily that they know absolutely NOTHING about
my disease, how it reacts to things, or the treatment that should be done to it. Really I should not know more about
it than the people that I pay thousands of dollars to. Sadly there is no other wound clinic in my area, that I know of. I just wish they would understand my wounds are NOT their normal everyday wounds. *sigh*
The reason we all have different views and we are all getting different treatments is because NOONE KNOWS how to treat us :( This is why I desperately think that PG needs a foundation of some sort, to help with more medical studies :( I would even let them study on me, hell why not? nothing else seems to be working and if can help the next person who comes along that has PG I would love to be part of that! I dont want anyone to go through this!
I seriously think my wounds are in the state that they are due to the treatment that has been done on them, it only makes sense that they would grow and be enlarged due to trama being done to them weekly by the scrapings. As far as things being low in my blood, the only thing that is an issue in my blood work is High Liver count...and thats being tested further tomorrow with more blood tests..but everything else has been normal for me.
I had read where some lady used UV treatment and it helped her wounds tremendously, has anyone else done that? UV light treatment? I think I saw mark say he did that once too? Mark?
anyone else? Now the story I read it wasnt PG wounds it was ulcers from something else but the lady said in the story that the UV treatment did wonders for her wounds.
Ya know unless you have this horrible disease you really dont know what its like. The pain that comes with PG is hard to explain the only way I know how to explain it is this, It feels like I burned my leg really really bad on the oven and that someone is also stabbing me in the burn area with a sharpe object...Can anyone else explain what the pain is like for them?
I love you guys, I really truly do, its nice to know I can come here and vent everything and throw out all my feelings to people who can actually relate to them.
Diagnosed with Pyoderma Gangrenosum May 09
I had the blues because I had no shoes until upon the street, I met a man who had no feet. ~Ancient Persian
Post Edited (Kirei) : 7/1/2009 11:11:52 PM (GMT-6)