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Valerie

Over 2000 Posts
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About Valerie

  • Birthday 05/04/1958

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  • Website URL
    http://vpgood@hotmail.com
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  • Location
    Novato, CA.
  • Interests
    Yoga, alternative natural healing and learning new information on alternative healing, camping

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  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 country. It's ridiculous the cost now. ANd you have to fight for everything you want or need. That's what kills me, with all the money we pay out, we still have to fight for tests, etc. Valerie
  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 the worst and I've about reached the end with him. He needs something bad happen to him to see what it's like. He's 55 and still smokes so he has a good chance of getting emphysema. Both his parents died at 70 and 73 of smoking/emphysema and he still smokes. I am so strong I don't know where it comes from. Maybe cause I have two kids I love to death and need a mom, a good mom I know I am doing everything for them that they need and will someday be so grateful for. He will lose out cause when he is old and sick, I'll be healthy and gone and so will the kids. Valerie
  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 couldn't get weaned. I don't know what my lifespan is or the chance of reoccurence. Maybe no one knows. Oh well, thanks for the information, I do like reading positive things about this horrible disease of cushings. Valerie
  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 that is not the way it works when you get disabled and sick. It has ruined his plans for retirement I know but to be angry with me for being sick is not right. So we are both angry. Have been to therapy but it hasn't helped in the several times of it. Val
  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 or flight reaction and make you crazy and that is the point of the story, Why the Hatfield and McCoys Disease could help explain America's most storied feud. I contacted numerous people at the newspaper telling them about my cushings story and how I've lived here most of my life and survived cushings which is a different type of disease, not heriditary but is treatable but not getting diagnosed properly and that tomorrow is Cushings Awareness Day and I would love to have them do an article on cushings to help educate the public about this disease that they mentioned but did not explain in detail about it and I beleive it would be a good thing to do for the community here since I had it, got misdiagnosed by 7 doctor's in 2 yrs. and when I finally did get diagnosed, I was told by the surgeon that in 3 more months I would have been inoperable as the tumor was wrapping around my optic nerve and would have needed radiation forever. That 1 in 5 people have pituitary tumors and they are not sure why they act up and if treated, the survival rate is good. But out of 4 emails, 2 faxes and telephone calls I made, no interest or response was received from them and I am sad to say, it might not happen. I asked everyone for help on how to convince them to do an article. But I can't get them to contact me. Where do you live and when did the article come out in your paper? Mine was written by the same lady, Marilynn Marchione and it says Associated Press under her name. Valerie
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