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hockeygirl

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Everything posted by hockeygirl

  1. How common is it for things like asthma to reappear or get worse after a BLA? Since mine has reappeared with a vengeance, I've had to be placed on a steroid inhaler plus albuterol. Does cortef dosing need to be adjusted to account for the extra steroids in the inhaler or is it such a small dose it doesn't matter? Thanks.
  2. Does Pfizer currently manufacture any type of meters? I know Abbott, Bayer, BD, Lifescan (a Johnson and Johnson company), and accu-chek make blood glucose meters. Might want to start with them because at least they have some sort of base technology to work with.
  3. At this point, from what I know, that has been shelved, never to be seen again. I know the drug companies aren't super interested in it because there isn't a large subset that would use it. If someone were to perhaps secure some kind of orphan disease research funding, it could perhaps be studied more, but as for becoming feasible in my life time... doubtful. Maybe that will change when I get to grad school if I can talk someone into doing it and letting me tag along as a research assistant, but I think it's going to take some deep pockets and someone with a vested interest to get it off the ground... Just my 2 cents, you can take it or leave it. I'm just a lowly undergrad chem student who talks biochem to one of my professors a lot.
  4. A cortisol pump is just an insulin pump filled with liquid hydro. The hydro is delivered using a sub-q catheter. The pump is programmable so you can set it to dose you. It would be really nice to have, but at this point, unfortunately, a real long shot. Why oh why don't I live in Norway or Sweden? Sigh.
  5. I've got an OK from Dr. F for a cortisol pump, but it's pretty much going to be a no go due to cost. The only way to get one is to get in a trial, but no one is going to run one, so we're stuck. They don't believe in the technology and the ones that are thinking about it are waiting on the results of the Norway/Sweden trial being conducted right now, which probably won't have results for another 4+ years based on the fact it's slated to go through 2012.
  6. ANything glittery rocks! Especially if it comes in purple. Awesome! Regular flocking is kind of annoying, stuff sticks to it and it looks weird, but it's got a nice 80's retro feel to it so I'd probably by 1 or 2. Yeah, I'm a clothes zebra! Ha ha ha
  7. One thing I want to know is if they finally learned to stop squabbling within themselves and actually start treating patients? Was that on the agenda? Because if it wasn't, it should have been...
  8. I don't understand why everyone is putting out drugs that are just to put you in a holding pattern. I tried to get in the SEISMIC study, but when I heard from the nurse that it's basically just like keto and it's not a cure, I thought, why bother?? Is it too difficult for them to actually research something that will cure us?
  9. Would be really helpful if labs would actually let us get our own results without a fight.
  10. I've been saying this for years, but nobody listens to me............
  11. I barely eat at all and somehow I seem to keep gaining weight, can they explain that one?????? Oh yeah, must be the tumor in my head... the one that I'm not imagining. The one that we know is there because we've actually seen him. They tried to tell me I had that metabolic syndrome or whatever it is. I barely eat anything. About three bites and I'm full. Sure I'm overeating. Whatever.
  12. Ahhhh, you know me too well my young Jedi Knight. Follow Yoda of the T-Shirt Slogans here and I shall show you the way.
  13. I'm debating as to which one I want. I'm not a survivor, I'm not an expert, I'm sort of a Cushie in Training. Maybe we need Cushie in Training shirts? Ha ha ha.
  14. If you're looking for T-shirts, use this: http://www.cafepress.com/cushingshelp to shop. The other one on here is kind of weird and outdated and will end up telling you that it can't find any of the shirts. They do still exist. Mary is going to work on consolidating the links and updating them.
  15. Only wish the dang doctors would read this stuff. Kind of stinky when the people who read it are the patients... Sorry I'm in a bad mood tonight. Just too tired to do anything.
  16. I saw the Archie show. He had some obvious differences like the third nipple I believe.
  17. Thanks! I'm going to print it out and read it later.
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