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About ChatiCat

  • Birthday 10/09/1961

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    Alabama / Tennessee

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  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 begin with and then they were adopted by CUSH to be made into pins that represent all Cushing's patients / awareness." The colors remained blue and yellow when CUSH had actual pins made but not in the same placement as originally used. It's neat how anyone can wear a pin of specific color and show support all over the world for a cause. Sharmyn, I remember my surgery was just after yours, Jacks and maybe Judy's. I was scared to death before surgery and you called me. I think I've told you what I thought about our first phone conversation...lol Cushing's awareness has come a long way since we were first diagnosed and especially since MaryO was.
  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 officers wanted Sue to know that the resolution had been passed before she died. The resolution was not actually official until the day before it was passed on April 8, 2006. However, Cheryl kept Sue updated and Sue knew in her heart that her dream for the CUSH organization to see a special day set aside for all Cushing's patients would became a reality. With respect for Sue wishes I felt like everyone would want to know how having a Cushing's awareness day got started in the first place. It is my understanding that CUSH initiated having a Cushing's awareness day several years before the first resolution was passed in 2006 (correct me if I'm wrong). As I sit here reading my copy of the National Cushing's Awareness Day resolution it states at the bottom that the "Secretary of the Senate is to transmit a copy of this resolution to the Cushing's Understanding Support & Help Organization (CUSH)." It is also my understanding that the blue and yellow support ribbons were initated by CUSH years before the first awareness day resolution was passed. Cushing's Understanding Support & Help Organization (CUSH) is a non-profit 501-C organization recoginised by the IRS. and your tax deductiable donations are appreciated. MaryO is an individual...her websites and message boards are not affiliated with The CUSH non-profit organization. Mary is a member of the CUSH organization and serves on the general board of directors for the organization. It is the goal of the CUSH organization to promote Cushing's awareness and hopefully some of you have plans to do that this year and perhaps CUSH could assist where possible. CUSH has a website www.CUSH.org you can find information there about past Cushing's awareness day. The website is not finished but helpful and easy to navigate. Oh behalf of the CUSH Organization Cathy Gifford, Treasurer and interim Secretary
  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, I learned that the new tumor in my brain is located in the hypothalamus. Surgery isn't an option and the tumor has been growing. Perhaps, I need to check into this new machine. Cathy
  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 research on Ketoconazole I've never found anything that says it can cause pituitary tumors to grow. However, I have seen reports supporting that (GH) Growth Hormone can cause tumor growth.....not only pituitary tumors but tumors located anywhere in the body. For this reason....I cannot take GH since I have pituitary tumor cells..... as well as other tumors in my body due to Sarcoidosis. Cathy
  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 study was intended to prove that if someone failed the test necessarily meant they didn't have Cushing's. I think it was merely the results of a study done on normal volunteers and patients with mild Cushing's disease.
  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 syndrome but yet believe they may have Cushing's to print out and take to their doctor. Cathy
  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 here: AOL News - 'Trauma Pill' Could Make Memories Less Painful http://aolsvc.news.aol.com/news/article.ad...S00010000000001 "During stress, the body pours out adrenaline and other "fight or flight" hormones that help write memories into the "hard drive" of the brain, Propranolol can blunt this. "
  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 the the running of these boards and the rest of the websites. To order click here: http://www.cafepress.com/cushpersonal,cush...upport.27670673 I hope this information is correct... If not, then Mary please correct it when you return... Cathy
  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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