There are a few words in Vasculitis vocabulary that need to be removed completely or to have their definitions solidified within the community so that everyone knows what everyone else is talking about. Patients need to be able to understand what a doctor means when they say a certain thing and doctors need to decide what language they are going to use when it comes to describing aspects of these diseases to each other.
One of the first ones that needs to go completely and as far as I know is Wegener's Specific is the term limited. When a doctor tells a patient that they have limited Wegener's it usually means that they have no kidney involvement. The problem here is that a lot of doctors also seem to feel that, if there is no kidney involvement, then the disease is not serious or not as life threatening as a disease path that does effect the kidneys. This is in no way true. It is possible to live with kidney damage through dialysis and as far as I am aware, a kidney transplant is a lot easier than, say, a lung transplant.
Just because the disease is not active in the kidneys does not mean it is not life threatening. Someone on the Vasculitis Boards put it this way, "We don't tell someone that they have limited cancer just because it hasn't spread to anywhere other than the breast, or the colon, or the skin." Limited should not ever be used.
Another term that needs to be determined as to what exactly it means is remission. It appears that each doctor has a different idea about when a person goes into "remission". Other doctors, and these are the ones that I tend to agree with, don't even use the term remission because it gives off the idea that the patient is somehow cured of this disease. I have a personal example of this. My grandmother has a hard time understanding that what I have will never really go away. It will always be there. For the longest time she would ask me why I didn't just go to the hospital and get some strong antibiotics, even if I had to stay there for a while. Finally, I got her to understand that being in the hospital was not what I needed. Now that I am getting back good blood work finally she now feels that I have been cured and am "in remission".
I prefer instead to use the term quiet. This conveys the idea that the disease is not active at this time, but leaves open the very likely possibility that it will become active again.
Along these same lines, doctors need to decide what the difference between a flare-up and a relapse are. Some people have said that their doctors say a flare-up is when there is minor disease activity while a relapse is severe. Others use the two terms interchangeably.
It is hard enough trying to find doctors to treat vaculitis, but then if you happen to go to more than one doctor and they each use different terminology then the patient can become confused about how their illness is responding and how they are physically doing.
Sunday, January 29, 2012
Thursday, January 19, 2012
Brains, why for you no work not good no more?
Here I am, 90 some odd days out from applying for SSI and I haven't heard a word yet. I decide that I should call and see what's going on as they have between 90 and 100 days to decide.
After spending a few moments trying to remember where it was that I wrote down my case worker's number I finally called and it turns out that he was out for the day. "I'll just leave a message I tell myself." This would require me to leave my name, phone number, and social security number. I give my name, and my phone number, then came the apparently difficult part. "843-92-.... uh......" (obviously these aren't the real numbers to my social- I haven't progressed that far into dementia that I would do something silly like that, but I wouldn't put it beyond possibility that I might now decide that this is my number). Finally, I remembered the last four digits and hung up the phone.
Maybe this will help them decide better that I can't work? I mean, I struggle to remember a number I've written on every form for college, many, MANY recent medical paperworks and is the same number I've had since forever. Eh. Maybe once I'm off the prednisone my brain will come back.
After spending a few moments trying to remember where it was that I wrote down my case worker's number I finally called and it turns out that he was out for the day. "I'll just leave a message I tell myself." This would require me to leave my name, phone number, and social security number. I give my name, and my phone number, then came the apparently difficult part. "843-92-.... uh......" (obviously these aren't the real numbers to my social- I haven't progressed that far into dementia that I would do something silly like that, but I wouldn't put it beyond possibility that I might now decide that this is my number). Finally, I remembered the last four digits and hung up the phone.
Maybe this will help them decide better that I can't work? I mean, I struggle to remember a number I've written on every form for college, many, MANY recent medical paperworks and is the same number I've had since forever. Eh. Maybe once I'm off the prednisone my brain will come back.
Monday, January 16, 2012
Celebrations, Little Birdies and a Football!
For my first post of the new year I've got excellent news! News that I meant to post a while back and just kept forgetting. I will blame my forgetfulness on the prednisone, because it is my go to scape goat for everything.
For starters the tweeting thing, yup, we totally won! The Vasculitis Foundation will be featured on Broadcause during the week of February 13th through the 19th! The link is to our page on Braodcause where you can find information and donate and what have you. I want to thank everyone that voted/tweeted (specifically all those people I cajoled, bribed, blackmailed, and threatened into it. Not really, I don't do those things.) In other twitter news, my twitter has not become an awareness platform, but a random soundbite platform for my random typings.
The other great news is that, for the first time in over a year, my bloodwork came back all in normal ranges! They are going to let me drop my prednisone to 5 mg a day if I am feeling okay in a few weeks! I am circling ever so closer to a period of quiet or remission or whatever terminology you wish to use. They don't know what I'm doing right, but they want me to stay my course. Which probably means I still can't go back to work for a while yet.
During my next visit in February they are going to decide if I need to continue coming back every month or if we can move out my appointments to longer increments!
I am also aware that some people might not like the Denver Broncos, or Tim Tebow. I don't really follow football so I couldn't tell you anything about the guy. I only bring him up because, as part of the Make a Wish Foundation he spent some time before one of his games with a young 16 year old girl who suffers from Wegener's like I do. She has been diagnosed for several years and has undergone over 70 surgeries. She has had one lung removed and exhibits the "saddle nose" deformity common in the disease. She is still a beautiful girl, though, and no matter how much she has gone through the pictures of her with her family as she is meeting Tim Tebow show a girl full of life and ready to face the challenges she has been given. I can only hope that I can face my future with as much grace as she appears to.
The press tracking Tebow as he is a star have shed some light on Wegener's and the problems that patients can face.
For starters the tweeting thing, yup, we totally won! The Vasculitis Foundation will be featured on Broadcause during the week of February 13th through the 19th! The link is to our page on Braodcause where you can find information and donate and what have you. I want to thank everyone that voted/tweeted (specifically all those people I cajoled, bribed, blackmailed, and threatened into it. Not really, I don't do those things.) In other twitter news, my twitter has not become an awareness platform, but a random soundbite platform for my random typings.
The other great news is that, for the first time in over a year, my bloodwork came back all in normal ranges! They are going to let me drop my prednisone to 5 mg a day if I am feeling okay in a few weeks! I am circling ever so closer to a period of quiet or remission or whatever terminology you wish to use. They don't know what I'm doing right, but they want me to stay my course. Which probably means I still can't go back to work for a while yet.
During my next visit in February they are going to decide if I need to continue coming back every month or if we can move out my appointments to longer increments!
I am also aware that some people might not like the Denver Broncos, or Tim Tebow. I don't really follow football so I couldn't tell you anything about the guy. I only bring him up because, as part of the Make a Wish Foundation he spent some time before one of his games with a young 16 year old girl who suffers from Wegener's like I do. She has been diagnosed for several years and has undergone over 70 surgeries. She has had one lung removed and exhibits the "saddle nose" deformity common in the disease. She is still a beautiful girl, though, and no matter how much she has gone through the pictures of her with her family as she is meeting Tim Tebow show a girl full of life and ready to face the challenges she has been given. I can only hope that I can face my future with as much grace as she appears to.
The press tracking Tebow as he is a star have shed some light on Wegener's and the problems that patients can face.
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