People concerned with awaremess.

[chris.wg]

I Just posted the following on my facebook page as well as the facebook group for others to use. I am aware it doesn't say it all but this is a start. I hope many others will post this or something similar to their groups to promote understanding.




This statement is being posted on my personal page as well as a face book support forum for people with GPA. It is as much for my support and self as it is for others be they my friend or those in the forum who want to be understood. I am a Weggie. This term is a affectionate term those of us living with Granuloma with Polyangiitis call ourselves. The reason is GPA use to be referred to as Wegners Granulomatosis. Having the technical statements out of the way here is what needs to be said. Not all of this applies to me persay but to our community as a whole. And perhaps more dose actually apply to me then those who know me realize. GPA is a horrible disease. It is classified as a Vasculitis. This term means it affects our blood vessels. In our case the vessels affected are the small and medium vessels. Do you know where in your body those vessels reside. EVEYWHERE. The primary area are the lungs, sinus, kidneys and skin. But are certainly not limited to this. Many people look at us and say oh you don't look sick or you are doing well. While on the surface this sounds great. Because as a whole we want to just be normal just like anyone else. But unfortunately these statements also tend to minimalize what we are actually going thru. Treatment alone is harsh on our bodies. The drugs can leave people feeling lethargic and cause weight gain. And that is a cake walk compared to what Gpa is doing inside our bodies. Do you know what it is like to have constant reviews of your kidney or liver functions due to disease or meds? I do. Do you know what its like to wonder what else this horrible thing you never heard of until you contracted it can affect but you were not initially told it can? I do. Do you know what it is to have people wonder if your faking it because they can't see what harm is being done to you, all the while knowing tomorrow a massive Flare could land you back in the hospital? I do. This is not a attempt to make anyone feel pity. None of us want that. It is just a attempt to promote understanding. To make others realize this is not in our heads or remotely made up. GPA was once a death sentence but because it is not widely know it is often over looked and discredited. There is no cure for this the best we can hope for is a remission. Please understand this is our lives. We deal with this daily. Weggies please feel free to post this in your status in hopes to gain some understanding amongst your friends and peers.





Let me know what you think.

[mishb]

Well done Chris

I'm thinking that it could do with something else, but brain fog has set in tonight.
It will probably play back in my brain while I'm trying to get some sleep

[im so blessed]

A friend once told me that a chronic illness like Gpa is worse to deal with than a dx like cancer where there is an end to the desease. This just goes on and on and the side effects of meds are like that of dealing with cancer. This is what a friend said. I am very thankful that i am NOT dealing with cancer. But it does feel torturous at times. And yes, the fact that you can tell someone what you have and they will say "i understand...last week i had a sinus infection ...bla bla bla." Its no fun. But it makes us a caring people if nothing else. And we do have so much to be thankful for! Good job Chris wg

[Debbie C]

Well said Chris, I wish more people could read this ,especially my friends and family.
Right now I am dealing with my nose that hurts so bad even to wear cheaters ( Glasses ) and I am wondering if I just have a sinus infection or is wg attacking my sinuses ??? If I will end up with a saddle nose ?? I'lll find out Tues. when I go to CC but I am seeing a new dr. since mine retired and I am scared she is going to put me on some crap. If only more people knew the s#*@ we go thru EVERYDAY !

[Jaha]

Thanks for posting that Chris. Deb I'm sorry that you are sick and that you have to deal with a new doc. It may be a blessing to get a new opinion on getting you healthy again. All the best to you, let us know how it goes.