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About Valerie

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    1000 plus postings board member
  • Birthday 05/04/1958

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  • Location
    Novato, CA.
  • Interests
    Yoga, alternative natural healing and learning new information on alternative healing, camping
  1. Kate, I am so sorry about another surgery. I haven't been on the boards in so long, my own problems never seem to end. I will be sending good thoughts your way. Valerie
  2. Hi Mary, On what Channel and time is Kate's interview. I am on Pacific time and the stations are different out here. Let me know. Thanks, Valerie
  3. I had an HMO when I was going thru diagnosis of cushings and saw so many incompetent doctor's. I have had Kaiser for 5 yrs. now and I also have Medicare disability so I can go outside of Kaiser if I want to see a specialist for second opinions which I have done. Kaiser is okay for an HMO as they don't worry so much about referrals. You just need a good PCP who is willing to work with you and you need to be a big squeeky wheel, I am, in order to get stuff done. My PCP lets Dr. F and me call the shots for the most part. I hope they come up with a better health care system in this countr
  4. Diana, It is so nice to see you post. I haven't seen you in a longtime but hope you are well. This disease has taken so much from me but the most frustrating part is that those closest to me, still don't and will never get it. I am so sick of it, that's what bother's me the most. And no matter how much I point it out or complain, it never changes. I am a survivor so I will make it but one day I will move forward and not look back at all those people who didn't help, didn't acknowledge my pain and suffering, or try to help with hugs or words of kindness. Especially my husband, he's t
  5. Wow Susan, So you had cyclical cushings? For a longtime. Are you now cured? I am so glad to read positive things about the outcome of cushings. I remember reading that cushings takes 10 yrs. off our life. I think Kate said Dr. F. told her that. I meant to ask him at our last phone consult but forgot. I think each of us and our cases is different. I only had mine for maybe 5 yrs. they think but I've been on steriods for 7 yrs. post op and so we are all so very different. My husband was told by my 75 yo surgeon that my chance of reoccurence was 5% at that time, 7 yrs. ago before I
  6. Thanks for the article, I have a spouse that is sick of me being sick, always has been and not involved with it, never asks how I feel or How my day was. I have never felt so alone and I'm sure many of us get that. After being sick for years, for me over 10 yrs., but I was a registered nurse who would never have deserted him or anyone in my family. I still care for those that get ill in my family but have learned to say no to alot of others. I am angry that I don't feel supported. Afterall, when you get married your vows say, "through sickness and sin till death us do part". But tha
  7. I also posted a topic on this same article that was written in our local newspaper in California on Friday. But they mentioned Cushings in it. It said,"Another relative, Bo McCoy, of Waverly, Ohi, said he had never heard talk of the disease although he has been diagnosed with a different adrenal gland problem - Cushings syndrome. That was all they said about cushings. So they classified it into the same category of this article which is what I understand, the pheos deals with hereditary diseases of adrenal tumors causing the catecholamines of epinephrine and adrenaline to cause the fight o
  8. Yeah, It sound interesting but since most pituitary tumors are benign, why put an anti-cancer wafer in there? Then you have side effects of anti-cancer drugs? I heard at Dr. F.'s support group 2 years ago that 1 our of 5 people have pituitary tumors and they don't know what causes them to act up. Anyone know? Valerie
  9. My son is anaphylactically allergic to all nuts and nickel. He must wear the hypoallergenic bracelet. It's gold and nice for $40.00. I have the same one but it's silver and gold. So we're the matching medic alert family. Valerie
  10. Yes Victoria I agree, how hard it is to get diagnosed with anything other than obesity, when one is so sick. Doctor's and most people discriminate against obesity because the media has the stigma for being so thin. Look at all the girls suffering from bulimia and anorexia nervosa. When I was actively working as a nurse, I remember this 26 year old mother of 2 young children died in the ICU from anorexia, her heart just gave out. I will never forget that. Now my 11-1/2 year old daughter is starting to eat salads and lightly and I'm really going to keep an eye on her. Society has create
  11. Yes, We certainly could use some new, good endos. The ones I've met have not been very impressive. Thanks for the informative article Dr. Kristy, I think you should become an endo. You know more than most of them. Valerie
  12. Hi Terry, Are you talking about black tea or green tea or both? I switched from coffee to tea several years ago and do much better with the caffeine in tea vs. coffee which makes me jittery and fly off the handle. I've heard about anti-oxidants in green tea (which I don't like), so I drink black earl grey tea. So does that have anti-oxidants too? Thanks for the input. Valerie
  13. Thanks for the info. Kristy. I was reading about the cushings syndrome and then saw you posted it. I'm going to look for something to send to the Family Circle magazine to give them more info. on cushings. We all need to educate, educate and educate the public, doctor's, everyone so people get diagnosed and treated earlier. That's my goal. Thanks again for your info. Val
  14. Hi Alisa, Copy the signs of adrenal crisis and read them over carefully and put a copy with your wallet, it is posted at the bottom of each page. You should always carry your cortisone with you and if you are over-stressed or sick, you need to up the cortisone to compensate. I had my pituitary tumor removed 9/2000 and I am still not producing enough to go off but the doctors never gave me the injectable cortisone. They just said to go to the nearest emergency room. So what I did was I got a medic alert bracelet and on the information sheet I put down everything , all the medications I'm o
  15. I don't know Lynne, I think they'd love it and it would kind of like being a support group for cushies at the same time. I think the appt. would run longer than 90 minutes though because anytime I've been around another cushie it's yack away. My dream when I do go back to work, I was a registered nurse for 20 years, would be to start a support group for people and families with rare diseases, where they could go and vent and have support. My son who is 8 also has a rare incurable disease. We're the medic alert family. Anyway, I think it's a great idea. Palo Alto is where I took my son ev
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