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Everything posted by radtravler

  1. Denise Potter Dallas,Oregon 2003 pit surgery Vanderbilt 2004 canceled pit removal after screws where in (I was in pre-op) Vandy 2004 Stereotactic Radiosurgery- Vandy 2005 Right half of Pit removed - OHSU 2005 BLA - OHSU
  2. I am afraid of what will happen with the Reform - I ,too, think we need change - but I am not sure this is it. I guess we'll see.
  3. I bought shirts before - Cushings survivor - although I probably need one saying Cushings Fighter - I think is's winning. I,also, bought one for my mom that said Cushings Support staff - I think. We loved them and they were big sizes - nice fit. I would buy another T shirt - I don't do sweatshirts or long sleeves.
  4. I definitely think people in Canada and other countries have a harder time. This woman had a diagnosed Pit tumor and they didn't believe her. I wasn't diagnosed for years, but when I was and wasn't satisfied with the care I was getting, I researched and went to Dr L. That won't happen with the Healthcare reform - if other countries are the example. we went 2500 miles to Dr L and to have 12 surgeries. I am thankful that I could do that.
  5. Wow that is a great article. And she is an example for those of us wanting to know of someone cure with the first surgery. Thanks MaryO
  6. This is very interesting to me. I wonder how it afffects those of us that have DI and have to take it?
  7. I have never understood this before. Thanks, Mary for this article. It explains it in a way that makes sense to me. I am going to print it and highlight the Cushings part for my brother - who says people are only fat because of what they put in their mouths.
  8. That is interesting. I just read an articale that said Diet Sodas may cause Metabloic Syndrome. I don't drink the sodas,but do use Crystal Light, so I guess from your article, I need to stop that as well. Thanks, Denise
  9. That is so true. A family doctor right out of med school diagnosed me. I didn't really know what Cushings was - just that my mom had tested for it once. Denise
  10. I think it is beautiful. But I , also , am not sure about Ugly. It sort of scares people.
  11. I haven't listened yet, but will this weekend. Lisa - I think that is a great idea. Denise
  12. This is different, but on Extreme Makeover, there was a little girl who couldn't feel pain or regulate her body temperature. Any time she fell or bumped anything, she had to be seen by a doctor to make sure there were no bad injuries. She had to be in 62* temperature all the time. So, I used to think it would be great to not feel pain - but not like this little girl. I'd like to be like the mole rat, though!! This is interesting. Thanks for posting it. Denise
  13. I work until 5 and have class from 6:30p -9:30. 9 (Central time) THe only time I could participate would be a Saturady or Sunday. My plate is too full until May when the semester ends. -Sorry. How do I listen to it later? Denise
  14. I'll try. The time is a bit of a problem for me, so sorry if I don't get to call in, I'll try to rush home from work in time to listen to some, though. (After this week, I will be in class on Thursday nights, so this will be my last chance.) I am in Central time zone and do not get off uintil 5:00p. But I really appreciate what you are doing. You are brave and smart !! Thanks again, Denise
  15. Call me ancient, but I have no idea what a blog is or what you guys are talking about. How do I listen? Denise
  16. wow - that's pretty amazing. Makes me wish I had been diagnosed before my hysterectomy. Thanks for posting it. Denise
  17. MaryO - maybe you should be an Endo - you know more Cushies and just plain know more about Cushings. It still surprises me when doctors ask me about my disease. I think my husband knows more than they do.
  18. wow - I am stunned. Thanks Jen. I might just be paranoid - but I have never felt in my "gut" that I was completely healed. And lately with all the stress I have been under I would have expected a crash. Between work and my mom being in the hospital for a month and then passing away. I only took extra Cortef 3 days - because my husband wanted me to. and I took Xanax with it - which probably canceled it out. I take 20mg of Cortef in the am - that is all. When I do take extra I only take 5 or 10 - not the recommended stress dose of 30. I haven't slept a normal night in months, I've gained 25 lbs in the last 3 months (I attributed it to my stress eating) I have acne on my body - not face. My hands and feet are swelling. Headaches are back full force.I'm starving all the time. For a year, everything seemed so normal. I don't get it. But I really believe Cushings is working in my body again. Supppose I have ignored all this with my mom being sick - but now I am up all night thinking about it. My Endo here is wonderful - but I questioned her about 6 months ago that I wasn't sure I was cured and she said you HAVE to be - you have no adrenals and besides you've lost 70 lbs , you look great. I will revisit this with her, but in the mean time I am cutting back my Cortef to see what happens. I've cut down to 15 the past few days and felt no different. If it continues, I will cut to 10 and see how it goes. It just boggles the mind - I felt so great for a year and the slowly things have started to happen. Haven't really wanted to admit to it I guess. And I am hoping so bad that I am wrong - maybe it is something else that is off with me right now. Will have some labs soon. Denise
  19. Hey Renee - have you had your hormones checked ? Or are you already taking some ? You don't have to suffer needlessly with those symptoms. We have enough to deal with !! Denise
  20. How sad. He never got to know life after Cushings, either.
  21. I absolutely agree with this outcome. I am about 2 yrs post -op. And hope this article will help some people who are having to make the decision of whether or not to do a BLA. Thanks Mary, Denise
  22. They , also, bring lots of food and feed the staff often. This allows them to get appointments with the docs - bribing the office staff , nurses ,etc. I worked in a clinic last year and we had lunch brought in at least once a week. I figured this is why my presciptions cost so much. I told my husband , I'd rather buy my own lunch and pay less for scripts !!
  23. That's way cool. Thanks for posting that ! However weird it is , I love cemeterys - love to photograph very old ones.
  24. I'd love to come , but will be in Dalls that week. I definitely want to meet you, though. Some other time. Denise
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