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Everything posted by GoodIdeaLady

  1. I saw Heaney Weds, Dec 3rd. ?Argued with him to let me try the Avandia. ?He kept the 2 recent MRI's on CD's, before and after photos, and gave me a thick form to read and sign before he will agree to let me do so --- and ONLY if I have a definite surgery date set so no delay if it doesn't seem to be working / or side effects make me quit. I was so upset I drug my HEAVY rolling case with the 25+ pounds of MRI FILMS that he hadn't even looked at back to my motel [ten blocks?] and cried; called my son in San Diego, who drove 2.5 hours to come get me. ?I am at his place now [sun, 2am]. ?Fly back to Oregon on Monday. ?Might take these MRI's to Scripps or "?" while here to request a 2nd opinion before the 2nd pit surgery. Heaney DID comment that "someday there WILL be a pill to cure Cushing's... there are things 'in the pipeline'...but that Avandia is probably not it [the definitive, PRIOR to surgery, solution]." ?He is only at his clinical desk on Weds, so you can guess that I will be calling him them to ask just what he was referrring to. ?I mentioned CRH Receptor Antagonists, and his expression had changed, "Oh, yes, those, too...." so that hadn't been what he was thinking about. I think that he and my 2 OHSU endo's think I'll die prior to "better than surgery" solutions are available, but I am not bedridden yet, nor in a wheelchair, nor having to make trips to the Emergency Room or even Urgent Care Centers... I can travel by myself, etc. ? The brain fog and fatique makes working impossible, and pain most of my waking hours is unpleasant, but so many have had NUMEROUS surgeries with parts we do NOT yet replace, that I am still holding out for a better answer. ? ?Even medical documents now state that Cushing's is NOT curable [now if I can just remember where I read that ---- and it was just earlier tonight!]
  2. :exclaim: Can I blame you, Rose Marie, for the fact that I cancelled my Nov 10m 2003 second pit surgery date to go instead to a Dec 3, 2003 appt with Dr. Heaney to discuss if Avandia would be successful for me? I have to apologize to MaryO... :B: I had PLANNED on the surgery, and she had posted it, and now I'm listed as "recovering" since it is now Nov 14th.... ooops! :wow: Bad girl, Tamara! I am going to email her now.... hehe.gif I promise to be good about keeping y'all updated on how it goes, etc.
  3. My supposed pre-op visit at the University of Washington Medical Center [a teaching hospital] was 5 1/2 hours of curious drs and students streaming in and out. The Oregon Heath Sciences University was only 2 1/2 and that included my waiting for blood work to be done and to fill a prescription. I have been called by an endo and asked to come in on an early date for my appt ---- because he had an internist who wanted to meet and interview the Cushiod. Yes, we should be allowed to charge, but we also are eager to inform, so others won't suffer the delayed and / or misdiagnosis that most of us had to endure. If only they had given us those 2 minutes, and with an open mind, eh?
  4. Heck, yes! ?If they can go up your nostril with cutting instruments to remove your pituitary or tumors on it, they surely could put a small tube up there and inject tumor-killing fluid; and intra-operative MRI's are already being done. ?Sounds like this one might not be a long wait to be available, it's a no-brainer [sorry, I couldn't resist that very bad word pun]
  5. Hmmm... Interesting statistics, but as for the Miami, Minneapolis comparison, only those who can slug thru snowdrifts remain in Minneapolis after retirement age, or they stay because they can't afford to move to Miami -- and thus would also be more apt to not get medical care unless as a last resort and cut care and treatments shorter. On the other hand, if the Miami elderly had more $$ for the co-pays, they might say, "sure, why not? I had better get this checked out and try whatever treatments they recommend." There are a lot of factors that can scuew the meaning of statistics. A book I was fascinated by in high school: How to Lie With Statistics. [no joke, that's a real book!] hehe.gif
  6. I like Salmon, so I'm trying his diet. I wonder if it will be as effective for Cushie's facial skin. I'll let you know in 4 days!
  7. That article and site is great! ?I discovered that clicking on the numbered items in the bibliography at the end gave the abstracts of most, and bookmarked a lot of them! ?You can't do that with printed on paper articles, ?Isn't the net great?! I also say an alert about Statins, which I am on.... scary... :but:
  8. :but: I commented, even as a YOUTH that "I must not 'taste' as good" as those around me because I got so few misquito bites. Funny thing was that under age 25, I had some Addison's symptoms: trouble tolerating heat, fatique, low immune system, low blood pressure.
  9. :B: ? Unfortunately, if we were NOT ?so apparently good at handling stress, we would have actually gotten more ?useful help. ?Think of the last time you saw someone dissolve into tears and act emotional. ?Hopefully, they got sympathy and the opportunity to recover. I was called "Sunshine" at ?one ?job; at another ?my computer password that the Network Administrator assigned, aaying he did it matching them to personalities, was, "Optimitist". ?Try typing THAT in first thing in the morning when all the screen shows is ++++++++++ ?! ? Even the counselors I have seen say I'm "not depressed" [clinically] even when inside I have been feeling suicidal! :but: Appearing to the world to be coping well, and even convincing ourselves that we are, DOES internalize things, and also can prevent us from getting the "time out" and comforting that we would otherwise get. I have noticed that Cushie's tend put more on their plate [responsibilities, eg work, school, family, church] than NORMAL ?people. ?We tend to feel we should and can do it all. ?And we love it and are proud of it, and feel we have really helped others --- and we have! ?But at what cost to ?ourselves? ?And how can we do more in the future if we don't scale down so we can be healthy? ?Looking at Lorrie's week in the Week End Check In 68 ?postings is a good example of what many of us are demanding of ourselves. Certain personality characteristics have been linked to heart attacks and heart disease. ?I think the same is true for Cushing's. ?Medication, surgery, and lifestyle changes were required for the first grouping, and I feel the same 3 items are needed treatment for Cushies. :exclaim:
  10. Looks interesting and useful. Thanks for sharing, Kristy!
  11. I knew that, but as a Christian single most of the ways to get oxytocin aren't available to me But just 2 weeks ago I had "that fun annual thing" at the gyno's and asked, since it's available as a nasal spray and even given to nursing mothers in IV's to strengthen labor contractions, if I could get a Rx. The dr said, "it's a VERY safe drug" but he still wouldn't give a Rx. I have MANY articles on it and that it lowers cortisol. Here's one: http://www.ncbi.nlm.nih.gov/entrez....bstract Many letting us try out oxytocin nasal spray to lower our cortisol would be something Dr. F. would let us do a study on... [see the other post on submitting articles... oh oh or something like that...]
  12. hehe.gif I'm all for it! Seriously. We can do this. We are [sadly enough I think, because it contributed to our illness] a group of over-achievers.
  13. :wow: Sheesh, Della's daughter was 42 [i am 43] with kids 19 and 21 [mine are 23 and 24], and although I had symptoms mildly before, the diagnosis was 6 years ago... and I have been appearing [to the outsider] to be doing ok on meds! I have obviously been ignoring the truth of my fragility and how quick and easily death could come. :exclaim:
  14. MC, we are not "guilty" of causing ourselves to be ill just because past experiences altered our response to stress. Example: Some people "have a bad back" and must limit certain activities, including when someone asks for help to move something, to honestly say, "I'd like to, but I can't. I have a bad back. Maybe (another person) could help you with that." They know that trying to do the task would injure them. The person may have gotten the bad back originally because they lifted something wroing, so you could say it was "their fault" that they got and still have this problem, but they didn't ask for it and I'm sure don't want it. If they knew at the time the action would create the problem, they would not have done it, if they could have avoided it. But maybe the bad back was caused by a car accident of which they were a passenger... NOW, let me translate that into getting Cushing's and the article: We may or may not have been in control of what started it. We don't want it. We can only semi-control the exaggerated / sensitive stress response. We have to accept we have the problem and adjust our lifestyle, including a polite, "SORRY, BUT NO" to many requests that normal healthy people could do. It is a lifelong condition that we must compensate for and do the best we can. PS I have noticed that people who make big attitude and lifestyle changes to cut their "to do" lists to one-tenth of before AND are not feeling guilty but are instead relaxed and happy also seem to be the ones who do NOT regrow tumors. The ones who insist on trying to be Super Wonderful Superwoman DO seem to have tumor regrowth. I think that falls in line with the studies = stress flips on the switch and it doesn't get switched off when it is supposed to, and even "minor" stresses can flip it. But remember the "pink elephant" joke were you are told to "not think about pink elephants" and of course because someone mentions that image, you can't help having it pop into your mind. Telling yourself to not get stressed is equally difficult.
  15. Exact is: http://neurosurgery.mgh.harvard.edu/neuroe...ine/LnksPit.htm
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