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Shauna

Over 2000 Posts
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About Shauna

  • Rank
    Cushie Helper
  • Birthday 01/02/1971

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Profile Information

  • Gender
    Female
  • Location
    Portland,OR/Vancouver, WA
  • Interests
    Reading, enjoying my kids and animals, staying busy

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  1. If you're looking for phrases I think we could come up with some good ones. Off the top of my head I can think of: Tenacity Knowledge is Power Support Friendship Survivor I'm sure there are more creative people than me. I'm lame at this stuff.
  2. I don't have any hard and fast answers, but my gut says that you'd probably have to tought it out - kinda like hubs is doing now. I'd think that it would be a bad idea to replace with steroids, which could cause permanent AI. I think this is what they call being between a rock and hard place
  3. Char, sometimes things happen that are just a pure and simple blessing. Your finding this article is one. My husband has been having severe problems for about a month. He's had blood tests out the wazoo, and since his doctor is my doctor, the doc thinks there's no way he could have Addison's and says that I'm paranoid (which I sorta am). But every time hubby describes his problems, how he feels, I tell him that's how I am every day and I can totally relate. Anyway, he is seeing a rheumy tomorrow. He also has some skin problems (dermoid lupus, rosacea) and has been using a rx 2.5% hydrocortisone cream on his face, topical. So you can imagine I read this article with much, much interest. How amazing is it that this could be hubby's problem? And that if it was some person on the board I'd be able to figure out the problem, but not when the problem is attached to someone I live with. I printed the article and this will be going with him to the doctor tomorrow. So thank you - there are little miracles in every day. I'll keep you updated if this is the problem but it sure fits. What a total blessing that this came up right before his appointment.
  4. I doubt there's a lawsuit - the basic tenant behind any lawsuit is 'have you been harmed? If so, what are your damages?' We have no damages, even though the commercial ticks us off, it hasn't really hurt us, other than wounding our pride.
  5. Mary, I love each and every one of those ideas. Almost all are totally doable by even those of us who are sick. I will step up my helping as of now.
  6. Ha! They'd probably dx him with Syndrome X. I'd love a copy too, please - shaunanelson@gmail.com
  7. I got my shot a few weeks ago. If the pharmacy doesn't know what Cushing's is (or the person giving the shot) just say that you're on long term high dose steroids - close enough, in my book.
  8. I love the flag idea and also think knowing male/female (if possible) is fantastic. I know I ticked someone off once by saying something about test results being different in the UK and something about being a man - to someone from the US and female. Of course, that's pretty typical of me.
  9. Joy, the aol symbol is if you have AOL instant messenger. As for the rest of your questions, I have no clue..lol. One thing I've noticed is that this board really does only pick up the newest posts, no leftover posts from the last visit, like the old board.
  10. Des, I just saw the fast reply button and wondered what that was. I'm making that a standard feature - HOW COOL! I think the best way to understand these boards is to just hit every single button and read what they say. That's what I'm doing and it's fun to see all the facets of this board. Mary, in some posts it'll start with a person answering a question and then two posts down will be the original question. I don't think it's a big deal as once you read it you understand what's going on. I believe that one post that is an example of this is Jenny L.'s post about salt and florinef.
  11. One thing that makes searching for posts easier is both through using the 'new posts' button in the upper right hand corner. Also, I just discovered that 'my assistant' will show me all active topics! I am just loving the make-up of these new boards!
  12. I'm going to dig up my CUSH hat and send it along - let's all do it and put pituitary Cushing's on it! Maybe more people will realize that even if our tumor is not technicall IN the brain it's awfully darn near!
  13. Those questions sound about right so here goes Yes Yes No - but others have had radiation (not always needed) Which surgery? I've had both and neither are too bad, honest Yes - I've lost all my Cushing's weight. Some do, some don't go back to normal Get your pupils checked out by an eye doc, asap. Sometimes normal, sometimes not. Stretch marks do not go away, but they lighten up Skin does get thicker Face being red is one of the first things to go away Yes, this can be fixed Doctors misdiagnose because of the misperception that Cushing's is too rare for anyone to have. So they treat the symptoms. I was sick for about seven years before finally getting treated. This is why it is SO important to find a good endocrinologist.
  14. I think we should bring this test (or create one!) to prospective endos. If they pass, we'll see them. If not, we're outta there. 100% here too. Also took an endocrinology test on the OHSU pit sight today, scored 100% there, too.
  15. I'm on 7 on the click thing - sorry, I've yet to figure out exactly the dose. I'm using Genentech's stuff. If I sound at all loopy today it's because I've been sleeping ALL DAY LONG. I think I've been awake for maybe a half hour total. What is wrong with me?! I know, wrong thread.
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