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ChatiCat

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About ChatiCat

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    CUSH Treasurer
  • Birthday 10/09/1961

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    Alabama / Tennessee
  1. Yes, CUSH was started just after Janice died. Below was taken from the first CUSH minutes. "On September 16, 2001 a group of people met in Cape Girardeau, Missouri for fellowship and to discuss and thereby approve the establishment of a nonprofit organization, Cushing's Understanding Support and Help (CUSH) Organization. Cookie Rothenberg took on the task of getting our Cushing's Awareness pins designed and made." Before Cookie died when I ordered ribbon pins from CUSH she had a note in my package explaining how the pins came about. "The ribbons were used in memory of Janice to be
  2. First of all...Thank you Mertie and anyone else who recognized (CUSH Vice President) Cheryl Farrar's hard work toward making Cushing's awareness day become a reality. There was many people who worked toward this effort in the past years as far as sending letters to their congressmen etc. (names to numerous to mention) and everyone's work is appreciated. However, in 2005 it became a major priority for The CUSH Organization's President, Sue Koziol to see this happen. CUSH dedicated a lot of time and effort to this endeavor. Sue was stricken with cancer and passed away March 2006. CUSH offic
  3. I believe several hospitals have Gamma Knife or Photon Knife available to patients these days.....however, I'm not sure all are as advanced as the one UVA has. The article says they have the "Gamma Knife Perfexion" and that may be a more up to date machine. I had Photon knife at Vanderbilt in 2001 the only difference in Gamma knife and Photon knife is the machine. From what I understand the Photon knife machine can treat other parts of the body as well as the head and the Gamma knife machine is limited to the head. I feel confident that technology has improved since 2001. Recently
  4. Kristy, First of all....Is your Cushing's back? I had no idea. My sarcoidosis is multisystemic also with my most concern being a tumor in the center of my brain that we're fairly certain is a sarcoid tumor. I saw a new doctor just yesterday who is a sarcoid specialist and I will start on the drug methotrexate this week. I can't take the prednisone due to my Cushing's. It dosen't look like a BLA is in my future due to the sarcoidosis and other medical issues. Does your brother have Erethema Nodosum due to his sarcoidosis? I do and it can be so painful. Cathy
  5. Just wondering who advised you that Ketoconazole could cause tumor growth in pituitary patients? I have a microscopic pituitary tumor and have been taking Ketoconazole since my radiation in 2001. My pituitary tumor has not grown (it can't even be seen on MRI). I'm not physically able to have a BLA due to other medical conditions and Ketoconazole has been a life saver for me. I was on a much higher dose of the medication but ultimately my adrenal glands are starting to stop working. Therefore, I only take 200 mg. daily now. I would like more information if you have it because in all of my
  6. This was the results of a study done by NIH (Not Vanderbilt) The report of the study is posted on the Vanderbilt pituitary center website. The results of the test showed that..... A cortisol level obtained 15 minutes after the administration of corticotropin-releasing hormone was more accurate in the diagnosis of Cushing's disease than basal urine studies and dexamethasone- suppressed urine cortisol levels. This test seems useful in the evaluation of patients with suspected Cushing's syndrome that have normal or minimally elevated urinary steroid levels. I don't think this particular st
  7. The "Ugly disease" article was written much better than the "You'd Rather Be Dead" article. Also, that is how Mrs. Vincent referred to her own Cushing's disease so it didn't offend me. When journalist write things that are not true sort of bugs me. "Such as the "You'd rather be dead" article referred to our heads being like basketballs. I have been known to refer to my Cushing's as "The Monster" oh yeah....and when I see myself in a dressing room I just have to laugh because I look like the "Pillsbury dough girl" :ph34r:
  8. Amy, When you had 139.7 UFC with a reference range of below 50.... were no further test ordered? I know that obesity can raise cortisol level just as someone who uses alcohol can...However, to my knowledge it would be minimally elevated over the reference range. Your's was almost 3 x higher than the high end of the reference range. Are you still in testing or have you got a diagnosis that you are comfortable with? Christina, Thanks for posting the article.....it's interesting but way over my head This would be a good article for anyone who has been diagnosed with metabolic sy
  9. I couldn't access the medscape article to read it. When someone has metabolic syndrome do they have elevated levels of cortisol? For someone to have Cushing's....even in mild cases, elevated cortisol would have to be present at some point, wether it be occasionally or continuous. I do believe that the entire endocrine system works together...And my personal belief is that if someone has one endocrine disorder diabetes, thyroid, etc. then I think those people are more prone to develop additional endocrine disorders including Cushing's. Cathy
  10. Saz, The cookbooks are $10.00 including postage. Yes, it cost extra for postage outside of the US but CUSH is absorbing those cost. Some people who purchase cookbooks, ribbon pins, etc. who are located outside of the US will add a little extra to their payment as a donation....however it is not expected. Cathy
  11. Just wondering if any of you saw this....As Cushing's patients we know how cortisol dulls the memory. If this pill can dull memory in trauma patients... by reducing adrenal hormones, what effect could this same pill have on Cushing's? Also, this drug has been on the market for years...used for high blood pressure. What effect can it have on people who take it for high blood pressure who don't need to have their memory dulled? If it truely reduces adrenal hormones should it be avoided during Cushing's testing? I'm not sure that I understand the full concept of how this drug works. Click
  12. Autumn, I believe you purchased a ribbon pin from CUSH didn't you? Also, I wanted to add that the blue and yellow colors tend to vary on some of the items..... cups, pens, pins, tote bags, brochures, etc. However, it's all shades of blue and a shades of yellow. Cathy
  13. This is interesting but how do we avoid it...MSG seems to be in everything. Cathy
  14. I'm not 100% sure but I don't think these stamps can be purchased from the post office. I don't think they are actual USPS stamps. However, they have been approved for use, by the USPS according to what I have read. (see below) "Approved for domestic use by the United States Postal Service, stamps are sold in sheets of 20 and are available in seven denominations. Each stamp measures 1.90" x 1.40" and the featured image measures 1.10" x 1.10". It looks like they are available for $18.99 per sheet of 20 -.37 cent stamps. from CafePress. Mary posted that $2.00 of each purchase will go t
  15. Jeanne, You can order the pins by mail or from the web site. If you will scroll up there is a post in this topic that explains how to order the pins, cost, etc. I'm glad that you are doing better....You have certainly been in my thoughts and prayers. Cathy
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