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Everything posted by Shauna

  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.
  16. Not too restrictive - that's for sure! I noticed with my GH (and my doc had warned me) that my middle fat would find a shape. And it did - the sides of my waist area is very firm now. I also think that is why I've finally stopped losing weight. I haven't lost much weight in the last four months (mayyybe 10 pounds, if that much). I swear GH is a miracle.
  17. That's what I thought too - can you imagine getting the wrong meds? We'd be crawling on the floor wondering what WE did wrong.
  18. SACRAMENTO, California (AP) -- Thousands of patients may have received the wrong prescription drugs last week due to a power outage at a hospital chain's computer center, hospital officials said Monday. There were no reports Monday of patients suffering from adverse reactions because of the prescription mix-up. About 4,700 patients from Fresno to the Oregon border were affected after a power loss at Kaiser Permanente's computer center in Southern California knocked the pharmacy's labeling system out of sync, said hospital spokeswoman Lea Rubio. It's unclear what caused the power outage. Patients who had their prescriptions filled Thursday at one of the 108 Kaiser-Permanente-owned pharmacies in Northern California could have received the wrong drug even if the information printed on the bottle was correct, Rubio said. The error also affects patients who ordered their prescriptions by telephone. Hospital officials discovered the mistake late Friday and tried over the weekend to contact patients who could have been affected by the labeling error to warn them not to take the drugs, even sending workers to patients' homes, Rubio said. But by Monday afternoon, 152 patients who could have received mislabeled drugs still had not been contacted, in some cases because they listed a post office box as their address, Rubio said.
  19. This is awesome! I'm listening to the webcast right now. This is my Dr. Cook and his nurse/wife that I love so dearly. Thanks for showing us this, Mary!
  20. What new book? I must've missed it! I don't know a thing about cookies, or I'd help - hope it gets fixed up soon, Sue.
  21. I'm so against this type of surgery and the promotion of it. First we heard of Carney Wilson's miraculous weight loss, then Al Roker, and now Ann Wilson. Congratulations to them for losing weight, but why are they being hailed in the media???? How about hailing someone with Cushing's who LIVED through it. This is an easy way out, that has so many complications. And to see it advertised as an easy way to lose weight is just wrong. Many of us have to deal with being heavy or obese - yet, somehow, by some miracle of God, we are able to work through it and still see ourselves as WONDERFUL human beings. I think anytime you become more focused on how you look than what your soul is doing, you're headed in the wrong direction. Our mindset about heavy people needs to change and having bariatric surgery is not going to do it. These people have the power to help society change, yet they chose not to do it - shame on them.
  22. I bought my in-laws some cooking related stuff at cooking.com through igive. Really cool stuff too! It's nice to buy and do something right, at the same time.
  23. WHO doesn't think dental issues isn't an important forum? Just because it's not the most heavily posted in forum, doesn't mean it doesn't matter. I've seen people post the same question in several forums - sometimes the question is pertinant to the topic, sometimes not. Does that mean we should get rid of those ones that aren't pertinant? Things are good as is, and I think we should be thankful that we have all the options we do have.
  24. Man, I chose the wrong profession! Free house?? I was happy with a company car. I'm upping my ante.
  25. License plate frame - I love that idea. Had to laugh about the thong. Perhaps we could wear those and model for the calendar. You know that'd REALLY spread the word about cush!!
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