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cheryl f

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Everything posted by cheryl f

  1. That is correct, it is a one day only event, this year. The Senate only passed this Cushing's Awareness Day Resolution, and Sen. Inhofe has said that he would be happy to sponsor it again next year. They explained why it's a one time thing only...and for the life of me I don't remember why....maybe it has to be passed as a bill in both the Senate and House and the President sign it...I don't know. I'll ask my friend again if she can find out how we can do that and get back to you on that......this would be the time to start working on it for next year, and to be able to get a perpetual Cushing's Awareness Day...so it appears that we can have one next year due to Sen. Inhofe's efforts, but we all need to work with our Congress people to do the same. The Congress person I checked with in OKC, was so not helpful. So we have alot of work to do. He won't be in our district next year, so I can get some help from the new one, whoever it is....
  2. Happy Cushing's Awareness Day! I'm not sure Sen. Inhofe understand how much we truly appreciate their efforts..Sen. Inhofe's office was so great-all of their staff just bent over backwards, especially Sabrina.... But as Lynne said, it wouldn't have happened if not for all the help of each individual that helped make it possible, each in their own way. And the quest continues, we need to contact our media today and let them know what this disease is, We need more reps in each state, so that we can have support groups everywhere. When we get more awareness, we can also show that there are many more people with cushings. One thing that at least two of our speaks said yesterday, that Cushing's is way underdiagnosed. I know we knew that, but hearing medical personnel say it still amazes me. One mentioned also that with so many people diagnosed with diabetes and hypertension, it was amazing that they are never tested for Cushings. Anyway, I'll look at my notes later and tell you more about what they said.... Oh! One biggie, the endo said that the dex test levels have been changed as of this year. The "normal" level is now 1.8....so when my 2nd endo said I didn't have Cushings because my dex was 4.1.....well! Yippee! (the others said I had it, just the one said I didn't). Anyway, I"m going to meet the "girls" and will talk to you later! love, cheryl f
  3. I want to thank everyone who has contacted their senators/congressmen. I feel that in the next two weeks that the Senate will officially give us the Cushing's Awareness Day, something that many have worked on for several years. If it hadn't been for people like Jayne, who inspired us to work on it and for all that she did to get the ball rolling, I'm not sure that we would have gotten this far. But it also took others contacting their senators & congressmen and for all of the help, no matter what you did to get us here, I want to thank you each and every one. I want to also thank our senators and congressmen that have listened to us and have worked to make this possible as well. Thank you so much! Cheryl F
  4. ok, i'm probably wrong...sigh...guess it was worth a try...
  5. Ok I've been monitoring the comic strip, first I thought they were going that direction, with the benign brain tumor comment, then they started playing, talking about other stuff, now the other doctor is asking Dr. Morgan if he wants to be involved in a "good cause"....hum.....do we dare hope? Especially since I'm having a ton of trouble getting people to put it in the paper????
  6. Yea Autumn! Do you know if they contacted Sen. Inhofe or not? You might call and ask them, they'll probably have you talk to the person in Washington who handles the health issues.....thank you for doing this! The resolution should be passed in the next two weeks....
  7. I'm going to post more about the Senators/Cushing's awareness day under that section, but I wasn't sure anyone was going to read it and that's why I posted it here as well, as it's so dear to Sue's heart. Please remember to call your Senator, you can call their local office, but ask to get the phone # for the Assistant who is over the Health issues in Washington, ask her to contact Suzanne, and ask that the Senator co-sponsor the Cushing's Awareness Day, and that the "Dear Collegue" letter will be there in a day or two. The letter was sent in the fall, Oct or Nov, and only one Senator, another one from Oklahoma responded to co-sponsor. So please follow-up and ask that they call you back to see if he/she will help co-sponsor it. I need to get to work, but if you have any questions, please PM me, or e-mail me and I'll get with you tonight...love, cheryl Thank you all! It will happen...ask your family friends from other states to call their senators too... I appreciate all those who have already e-mailed, called their Senators...this can happen, because of you! MAKE THAT CALL!!!
  8. Excellent! Thank you so much.... one thing I would encourage tho is for everyone to also call the US Senator's local office, and ask for the Senator's Washington office so that you can speak with his/her Assistant is deals with Health Issues. Let them both know that this "Dear Collegue" letter is coming, and that they need to contact Suzanne in Sen. Inhofe's office. There was one sent in the fall, I think in Oct or Nov and only one Senator responded, that was another one from Oklahoma-Senator Coburn. We are asking the Senators to co-sponsor the Resolution to make April 8th, Cushing's Awareness Day. Then tell them you have sent the e-mail and ask for a call back to see if the Senator will help co-sponsor it. I can't remember if I said all of that in the last nights post..I was half asleep when I found Suzanne's e-mail asking for the help. When I first contacted my Senators office, I also sent a letter outlining what I had dealt with personally, and of situations with my friends who had dealt with it to some degree. My understanding, if I was to call the Senator from another state, they don't really listen to you, so it has to be someone from that state calling their Senator. Which makes sense....so having friends/relatives calling will help tremendously! So I've contacted Oklahoma, a friend is contacting Utah, what other states do we have??? Thanks! Cheryl f
  9. I've posted this other places, but need your help now.... Please contact your US Senator, have your friends, your out of town relatives, contact their US Senator this week, and ask them to contact Sen. Inhofe (OKla) office to co-sponsor a resolution, making April 8th, 2006 Cushing's Awareness Day. They will be getting a "Dear Collegue" letter in the next few days. They need to contact Suzanne Meledeo in Sen. Inhofe's Washington Office. They will be able to get the telephone number. thank you so much, If you can, ask your senator's office to contact you back and let you know if they will help co-sponsor the bill. Let me know if possible. thank you so much, Cheryl Farrar cheryl1957ann@sbcglobal.net
  10. todays installment of Rex Morgan MD- they are getting ready to go play golf and I'm sure meet his patient-with the benign brain tumor...tune in tomorrow!
  11. Judy, wasn't that a very interesting clip? I enjoyed it so much, can't remember who it was that posted it... I appreciate the "interest' in the comic strip..lol ..it doesn't matter how the word gets out, does it?! We just want people to know what Cushings is...so I'll keep you informed and let you know how it plays out.....will it be Cushings....only Rex Morgan MD knows for sure!
  12. Ok, today's strip mentioned the brain tumor again, and how Rex Morgan goes the extra mile for his patients....tune in tomorrow (and probably this time in April!)
  13. So watch Rex Morgan, MD, let's see what HE has to say about it! lol (my fingers are still crossed Lynne...)
  14. Ok, I started to wonder...is it or not? I checked the Brain Tumor Registry, and it is listed as a brain tumor. The Presidents message says in 2004 the Public Law 107-260 mandated MPCr to collect data on all primary brain tumors from most of the US. CBTRUS-Central Brain Tumor Registry of the United States, has many different tables with the median age, Non-malignant Male/Female, whites/blacks, etc. Also the CBTRUS has estimated new cases include all primary malignant and non-malignant tumors of the brain, central nervous system, pituitary and pineal gland, olfactory tumors of the nasal cavity. So what can I say? Look at the website and see what you think. It is easier to say brain tumor...as opposed as trying to tell someone where the pituitary is....
  15. Seems to me when I saw the brain tumor registry, they also classified the pituitary tumor as a brain tumor....hum...I don't care as long as he talks about Cushings....it's going to be what he's thinking...tune in tomorrow....and ya know, Rex Morgan MD never gets any older...still a good lookin' hunk....lol
  16. However, when I had my appt with my neurosurgeon, he did call it a brain tumor, and I've seen a few references to it that way as well....my fingers are crossed!
  17. Did you see the comics today? In Rex Morgan, M.D., it talks about his golf pro praising him because he saved his life when he had a BENIGN BRAIN TUMOR! Do you think it's possible???? I'm so excited! What do you think????
  18. I know with the holidays coming, that going someplace in April is probably the last thing on your mind...but please be thinking about it...after I get confirmation from all of our Doctors (have 2 confirmations) we will list the info... Hope to see you in OKC....those that I have talked to that aren't going to be able to come...we'll miss you tons! It's only 112 days until the Conference! cheryl f
  19. What's the name of the new Patricia Cornwell book? Is it in the Scarpetta series? Love those books! Cheryl F
  20. and moi....lol c Let us know if anyone hear's from their Reps/Senators....
  21. Sue, Well of course I told them to call Kyle...silly girl...gave them all the info. Also sent the letter that I'd basically sent to the Senators, along with my personal experience. I'm very hopeful that they will get ahold of him, sounded really positive. Actually I've talked to 3 different Rep's staff members in the past two days. Had one of them laughing when I told them about the "panting" symptoms..... Autumn, party on girlfriend! We'll have to think of some fun things to do... Debbie, I found the letter on the website, if you can't locate it e-mail me and I'll type it for you in an email... All will be well, this will get done! love ya! cheryl f
  22. Two of the Rep's offices in OK called me today...told me to fax the info and they'd look into it...
  23. NYCSmiles, I'm not sure if it would help, but if you call the Senator's offices, and see if you can talk to the person who deals with the Health issues, you might let her know you want to send the bracelets or whatever. Or if it's possible, if you live close by, you might actually visit their Senate office there in NY and meet with some of the staff. It's worth a try....they are so busy right now in Washington, that getting to know their staff might be the easier way anyway...good luck, we'll get this going!!! Don't forget, party in OKC April 8th!!! love, cheryl f
  24. Hi NYCSmiles, Thank you for your very kind post...and for adding the senator/congresspersons info on the site. This will get done and if even one more person learns about it, it will be a success! Let me know what your senator's say, I'm curious about what they say... Hope you are nice and toasty in NYC, did I hear it was snowing???? Take care, Love, cheryl f
  25. We've been working with the OK US Senator, James Inhofe to get a resolution for Cushings Awareness Day April 8, 2006. He has sent out "Dear Collegue" letters to other Senators to ask if they will help co-sponsor this resolution. Only one Senator-Tom Coburn from Oklahoma has replied to his request so far. They are going to wait until March to actually introduce the Resolution, and are telling me that to do it sooner might actually get it delayed in committee. The Senate Leadership has asked them as well to wait until March and said that this is actually a very easy Resolution, that when brought before the Senate it should be easy to pass. However, they still need other Senators to help. Will you 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. I included in my request a paper telling about my Cushings experience as well. My understanding is that individuals from the states need to contact their own Senators. I asked my friends in Utah & Idaho if they would contact the Senators in their state also. This can and will get done with your help...you can also contact your Congress person, as some Congress people are trying to get this done in the House of Reps as well. Please do this as soon as possible as they will be going to recess with the holidays coming up.... I looked in the telephone book for my US Senator's names under Federal telephone #'s. It would probably be on the internet also if you don't know your senator's name. If you have any questions, contact me at cheryl1957ann@sbcglobal.net or SuziQ at SuziQ8846@aol.com And when this gets passed, we are having a party in OKC on April 8th!!!! Be there or be square....love ya, cheryl f
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