Making lemonade from molehills

[Dirty Don]

Can't do much about your insurance Maria, but there is a Mayo Clinic in Jacksonville...long drive, but certainly doable. Good luck!

[Al]

I need a weggie clinic over her in the Sunshine state. Medical care here in the US is very High unless you are 65 and have medicare. Its very hard to get individual insurance if you have a pre-existing condition. We tried getting private insurance and my whole house hold was declined. I have insurance through by job wich I pay a portion but Its and HMO you have to go to the doctors they assign and also hospitals . So you don't get to go to the doctors you wish. Hopital stay is very expensive. Its very scary! If I loose my job no insurance.

Maria, without a Wegs specialist, you sort of have to be your own doctor--you know as much about the disease already as many of them. Your insurance story is disgusting; it is precisely what I hope we can, somehow, make right.

Al

[annekat]

Maria, without a Wegs specialist, you sort of have to be your own doctor--you know as much about the disease already as many of them. Your insurance story is disgusting; it is precisely what I hope we can, somehow, make right.

Al

Well, this thread started out with idealistic thoughts about somehow getting a vasculitis center established in the state of Washington, and we could extend the idea to other areas of the country which lack vasculitis centers. Now it has evolved into the sad state of insurance, the expense of medical care, and lack of good health care for all in this country, and touched on what, if anything, we might be able to do about it. All good things to discuss here on this forum!

As far as being one's own doctor, yes, I am finding that very necessary, since I also lack a vasculitis specialist! Fortunately, my Wegener's has been simple and straightforward enough that I can do that with the help of this forum. My doctor is not bad at what he does, the tests and treatments he has prescribed are pretty much correct, so far, I think, and they seem to be working. But the office time spent with him and the actual discussions about this disease and its ramifications are so limited that, as I said before, I would absolutely LOST without this forum as far as understanding what is going on in my body. If things turn for the worse, this forum has made me very aware of what I need to do as far as somehow connecting with specialists and given me some resources for doing so. Or if I end up in the local hospital, hopefully the staff there will be able to connect with those resources as well.

In lieu of being able to make specialist centers appear close to home, or finding ways to travel to or hook up with them, we need to keep making regular doctors and the medical community a lot more aware of Wegener's and other forms of vasculitis, and other less common autoimmune disorders, and get them out of the realm of "rare" diseases, in light of what seems to be more and more cases being diagnosed. It is encouraging to know about research centers such as the Benaroya Research Institute in Seattle, which Al cited in the first post of this thread, Benaroya Research Institute - Medical Research Institute. Well, that was my first attempt at inserting a link, and it didn't go quite as I thought, so I hope it worked.

Anne

[annekat]

There is very little mentioned on the website mentioned above about vasculitis or Wegener's! I hope they are actually doing research in that area, or plan to, and that their website will be updated accordingly!

Anne

[pberggren1]

And don't forget there is always Dr. Phil........lol.

[annekat]

And don't forget there is always Dr. Phil........lol.

True, I think of some of you as almost my doctors, considering the advice you give and that you've been on here and had Wegener's for quite a bit longer than I have...... !

[Al]

Well, this thread started out with idealistic thoughts about somehow getting a vasculitis center established in the state of Washington, and we could extend the idea to other areas of the country which lack vasculitis centers. Now it has evolved into the sad state of insurance, the expense of medical care, and lack of good health care for all in this country, and touched on what, if anything, we might be able to do about it. All good things to discuss here on this forum!

Well, Anne, threads are sort of like children. You cast them out in the world and wish the best for them. But they are on their own, and develop according to unknown and unknowable rules. Sometimes they turn out very well indeed, and even have successful children of their own. Other times they lose their way--maybe to later get back on a good track, but that isn't guaranteed. I have no problem with where the thread had taken us. A vasculitis center in the Northwest would, indeed, be a fine outcome; so would improving the insurance mess. Another reasonable, and maybe more possible, good outcome would be to bring the researchers into our conversation. This is why I originally brought up the Benaroya Research Institute. (Your link works fine). It is true that GPA is not on their top ten list (there is more money available for some of the biggies, like MS and DM type I), but it is listed, and it could be that we could have some influence in directions to take the research. Finally, as you point out, one of the largest contributions we can make is to educate the clinicians and other medical practitioners.

Al

[annekat]

Well, Anne, threads are sort of like children. You cast them out in the world and wish the best for them. But they are on their own, and develop according to unknown and unknowable rules. Sometimes they turn out very well indeed, and even have successful children of their own. Other times they lose their way--maybe to later get back on a good track, but that isn't guaranteed. I have no problem with where the thread had taken us. A vasculitis center in the Northwest would, indeed, be a fine outcome; so would improving the insurance mess. Another reasonable, and maybe more possible, good outcome would be to bring the researchers into our conversation. This is why I originally brought up the Benaroya Research Institute. (Your link works fine). It is true that GPA is not on their top ten list (there is more money available for some of the biggies, like MS and DM type I), but it is listed, and it could be that we could have some influence in directions to take the research. Finally, as you point out, one of the largest contributions we can make is to educate the clinicians and other medical practitioners.

Al

Hi, Al..... no, I didn't have a problem with where the thread led! I thought it had a good outcome. I hadn't really thought about the money part being a factor in research, how much $$ is available for certain areas of study. It makes perfect sense. I think vasculitis is due for a little more $$, since the diseases like MS already get their due attention. I think one of the best ways to educate the clinicians about Wegener's would be to suggest that they read this forum! If they would really take the time to do so. Otherwise, I guess we could start demonstrating outside of clinics and hospitals to call attention to ourselves... just kidding, of course. It is good to know that research is being done at Benaroya and other places about the fine points of autoimmune diseases, who gets them and why, etc., in an attempt to uncover their mysteries. I found some interesting links on the site that I might not have found anywhere else. It WOULD be cool to influence the direction of the research, and it sounds like having the relationship you do with your doc is a good start.

Anne

[Dirty Don]

It WOULD be cool to influence the direction of the research

The only thing outside of the 'play' anarchy going on now around cities that would influence people, would be millions...no, billions of dollars, or even a more profitable & generous country...GOT MILK?

[chrisTIn@]

And don't forget there is always Dr. Phil........lol.

The 'Doctor Phil Show' is broadcasted here on television!