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SuziQ

~CUSH Founding President~
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Everything posted by SuziQ

  1. The pins we promote and sell to help support CUSH do not have angels on them. They are yellow and blue ribbon pins.
  2. Thank you! Thank you! Some of us do need the guidance of a form letter though....lol....such as moi.
  3. Please do not use the form letter. That is a suggested letter. You must alter it to make it your own. Also, there is a protocol to follow for emailing your Senators and Representatives. Letters to Congress Include the following for your senators: """please contact the Senator's office in your State, and ask the person who is in charge of the Health issues, to contact Suzanne at Sen. Inhofe's office 202-224-4721. This telephone # is for the Staff of your senator to call. Ask the Senator if he/she will co-sponsor the Resolution making April 8, 2006 Cushings Awareness Day. """ Include the following for your representatives: """please contact the Representative's office in your district and ask the person who is in charge of Health issues, to contact Kyle Robertson at Senator Geoffrey Davis' office 202-225-3465. Ask your representative if he/she will co-sponsor the Resolution making April 8, 2006 Cushing's Awareness Day.""" We all have two Senators and one Representative we can contact. The Resolution has been started. This can be done! If you have any questions, please contact Cheryl or myself. Thanks! Sue
  4. Oh! And I'm also checking into the cost for 535 CUSHings Ribbon Pins.. It's the one on the right.... Duh!
  5. Reps? Cheryl, if you're talking about the House of Representatives in Congress you need to have them contact K. Robertson.
  6. ""Prescription medications for conditions such as depression or high blood pressure are lifesavers for many people. While these treatments do much good, they've also been shown to cause unwanted weight gain -- up to 10 pounds per month. The Main Offenders More than 50 common medicines carry the possible side effect of weight gain. Steroids and some older anti-depressant medications are at the top of the list. But recognizable names such as Paxil and Zoloft are part of the group, too, as are the heartburn drugs Nexium and Prevacid. What You Can Do Just as doctors advise against self-prescribing, they also strongly discourage patients from abruptly stopping a medication because of weight gain. If a particular prescription seems to be causing excess pounds to pile on, you should first ask your doctor if he or she can switch you to another medicine. But if after changing to a different drug the weight gain persists, you may need to look for an alternative."" I knew that some drugs could make us gain weight but I didn't realize how many of them could. Too bad they didn't list all of them for us.
  7. Lori, I just reread your posting .. I read it wrong. Not that I can list the Congressmen anyhow..... I thought you wanted to know who'd been contacted. We have no idea who all has or has not been contacted in the past. We started out with one in the Spring and added another and then it was three and now four. Basically we need someone in the House and the Senate to introduce legislation for Cushing's Awareness Day. They have to have support from their colleagues. In the posting just before this one.... I posted about Stephanie's Representative. She had originally contacted his office in the spring. When I started this topic this was one of the things I wrote: ""I also talked with Stephanie and she contacted her Representative's office again. They do have her letter in Washington DC and she was given a contact in her Representative's office in DC to write to so she did and mentioned the other Representative's who are willing to support this day.""
  8. This is how it works. Stephanie just called me. Her representative's office called her this morning and is willing to support Cushing's Awareness Day. He said he is looking forward to receiving the House of Representatives "Dear Colleague" letter. This is getting so exciting. Dare we believe?
  9. We are not posting the Senators and Representatives names on the message board. We do not have permission to do this. That's why I asked Lorrie to contact me if she'd like more information. You can contact any of the people who are involved, not just me.
  10. It couldn't hurt, Lorrie. Contact me, if you'd like, for more information.
  11. I forgot to tell you.... I believe the Cushing's Syndrome Fact Sheet is for all of Congress...
  12. Cushing's Awareness Day A goal since Mary started the message boards in 2000. April 8th, Dr. Harvey Williams Cushing's birthday, our choice for a National Cushing's Awareness Day. We've never given up on this idea. First of all I want to say a big Thank You to Jayne, who has worked so hard toward this goal. Jayne wrote to her congresswoman and is in the congressional record. Jayne even wrote to the President. Jayne didn't work on this over the summer as she needed the summer to recover from her lung surgery. I'm happy to say she's feeling better. I know that many of you wrote to your congressmen. I have no idea who or how many of you did this with the exception of: Emily Shelton, who contacted her congressman's office last spring, and in turn, his office contacted me. Stephanie Womack Gilchrist, who sent me a copy of the letter she sent to her congressman. Here's what's been happening since the end of September. I talked with Emily Shelton and Jayne Kerns a couple of times about Cushing's Awareness Day about what we should do next. Cheryl Farrar began contact with her congressman's office. I talked with Emily's congressman's office and he requested a Cushing's Syndrome Fact Sheet. I combined Mary's, Jayne's and my information on the fact sheet and sent it to Emily. Emily added her ideas, formatted and completed the fact sheet. Then there were a few changes made by CUSH officers and we have a final copy. Over the first two weeks of October Cheryl had several contacts with her congressman's office. About time we finished the fact sheet Cheryl's Senator decided to do a Senate Resolution for Cushing's Awareness Day and shortly thereafter sent a "Dear Colleague" letter, requesting support. At the same time, Emily sent her Representative the Cushing's Syndrome Fact Sheet and his office is going to work on this in the House of Representatives. I also talked with Stephanie and she contacted her Representative's office again. They do have her letter in Washington DC and she was given a contact in her Representative's office in DC to write to so she did and mentioned the other Representative's who are willing to support this day. Yes!!!
  13. I found this very interesting. Seven months post op I had my first bone density test and was found to have osteopenia. Subsequent bone density tests have shown enough improvement that I no longer have osteopenia. At the time of my diagnosis, my endo asked me if I took calcium. I only took a woman's one a day vitamin which was calcium and vitamin D enriched, so he added more calcium and vitamin D. Shortly after my bone density test I started drinking Revival Soy Shakes and continue to drink them daily. I also eat their chips and bars occasionally. I'm not promoting this product in particular.. there are many soy products on the market; it is just the one I use. I just can't help but wonder if it's played a part in helping my bones. Of course, there's a negative side - the heightened risk of breast cancer. I don't think anything comes without a risk of something... Just wanted to share....
  14. I forgot to ask Mary when I called her in Barbados this week.... She'll be home this weekend and maybe she'll know if they're ready for us yet. Sue
  15. WOW! This is great, Mary! How exciting to have our own stamps!
  16. I always knew I was one in a million... Seriously... I think if better statistics were kept of Cushing's patients like many other disease then I'm sure there's more of us than recognized. And, of course, many of us go undiagnosed forever.. sadly. Some doctors may see, diagnose and schedule for surgery, one patient in their lifetime of practice. There's not a national registry.. some of us have inquired. Although the CUSH secretary, Lynne Clemens, is trying to keep a record of Cushing's patients, we know that not all patients send her their information. Even if everyone sent their information to her, there's the hundreds who've had Cushing's before this web site was formed and even before the internet, who we will never know as a Cushing's patient. This all goes with one of our favorite sayings: "Cushing's is more rarely diagnosed than rare." True? Who know.....but many of us think it is.
  17. Thank you, Mary! Today is CUSHING'S AWARENESS DAY for all of us and I'm tickled you've honored this day with Dr. Cushing's picture. Last night while talking with Jayne she asked what I was doing to celebrate today. I am wearing a lot of pins today... my way of acknowledging today. I am still hopeful that we can have a proclamation for this day... It didn't happen for us this year... but I'm not giving up the quest... Today is a new day on our journey for awareness. Sue
  18. Just remember that they are 'practicing physicians'..... I'm just not sure what they're practicing...
  19. Kathi, that a big plus. Would it be possible for you to talk with him? I realize it's too late to have an 'official' Cushing's Awareness Day for 2005, but it's never too soon to work towards the goal for 2006. He might even give you some ideas on what we need to do for our congressmen to 'truly listen to us'. Sue
  20. Great idea, Sharon.. Maybe we could work on that one... I am going to be talking with Jayne tomorrow and I'll mention this to her, too. Sue
  21. I've been reading everything that pertains to these drugs... I take both. I posted in my Fibromyalgia topic about my appointment Monday with my Rheumatologist... My dosage is significantly lower than the dosage used in the clinical trial. I take an aspirin every morning per physician recommendation so my Rheumatologist and I decided that I could continue my Celebrex at this time. As for Aleve.... I don't take enough of it to hurt me. One problem I see is that people are taking this drug for longer than the recommended time. Over the past several years there have been many studies where we were told one thing and then several years later told another.... Surely you know what I mean. They have not taken either product off the shelves yet.... so it's not a completely done deal.
  22. I read about this earlier, Mary. Of course I started complaining about Pfizer's stock price dropping again.
  23. Well, I'm screwed! The following was in today's edition of most of the MI newspapers: "Flu shot clinics scheduled for worksites, pharmacies and grocery stores have been canceled so VNS has enough vaccine to supply nursing homes and caregivers." They are hoping to have enough to give to the elderly - only! Prior to reading this article I had called my doctor's office and they'd already told me that they would not have any flu shots to give and that the health department was not going to be able to give them this year either.....
  24. I read that earlier, Mary, and started to worry. If I don't get a shot - ain't no one seein' me until Spring. I'll stay right here in my little apartment.... Well, big one! Anyone up to bringing in groceries??? I'll even give you a bed for the night.... And lots and lots of chatter.....
  25. Just wanted to tell you, Mary, that another feature I really like is the 'last post by'.. I love being able to click on a topic and not go to page 1 if we're on page 2 or 3. It's so much nicer to read the posts new since you were there....
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