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Everything posted by Valerie

  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
  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 created this nightmare with the skinny models, just pick up a magazine. I was thin all my life till I got cushings and will never be that skinny person again. It is very hard for people to overlook obesity but it is a crime that medical doctors judge you instead of help you. Kristy, thanks for the article and it's good to see you posting back on the boards. We missed you. Valerie
  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 on, that I am adrenal insufficient and need 100mg of solucortef in trauma (that is a standard treatment for adrenal insufficient people with medic alert now), and beeper numbers and phone numbers of all medical doctors and family members to contact in case of emergency. This I also have copied in my wallet. I have never had an adrenal crisis although I have come close. You will learn how to adjust your cortisone as you go. I also have an 8 and 10 year old that wipe me out and probably why I'm not recovering as rapidly as I'd like, I can't imagine having 5. It would be nice if you could get some help or sleep while they're at school. Are you producing any cortisol at all? If not, you may want to get the intramuscular cortisol filled and carry it with you, in your purse. Also, get the medic alert bracelet and always wear it and instruct your oldest child to call 911 if you show signs of adrenal insufficiency. My best to you and keep posting those questions. Valerie
  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 every 2-3 months for 5 years when he was sick before I got my cushings. It's about 1-1/2 hours from my house. I'm sticking to my cushing endo at UCSF, don't even see my primary care MD anymore. To me most docs are useless, what I unfortunately learned the hard way with this whole cushing experience. I use my best judgment and heck, I had probably as much training and more experience then most of them by now. I go with my gut and if there's a real problem, I call my PCP and ask his opinion. Got to love the idea of getting a bunch of us cushies together though. There certainly are enough of us around the Bay Area, in the Palo Alto area but I wonder if these guys have any cushings experience. Hate to go to a doctor just to educate him and then have to pay him for it on top of it. Later, Val
  16. Tracey, First of all HAPPY BIRTHDAY! You are very lucky to have a doctor spend so much time with you. Very rare. I've been going to UCSF for 2-1/2 years and now am going to see the head endo their in his private practice without the fellow residents. My great resident left to become a real doctor and I've been tossed around and am sick of it. So now we'll see how much time the big guy gives me. I don't need doctor's in training asking all the questions and having to repeat myself to the big guy, what a waste of time. I do go in prepared with my list of questions everytime I go in there and I do insist he answer all my questions before I leave. Good research Kristy and thanks for letting us know how poor our healthcare is in the country. Just re-inforced it for me, something you know but don't want to admit or accept.
  17. Great article and thanks for printing it out for us. ?I spoke to Dr. Chrousos when I was going through the diagnosis stage of pit cushings and he was wonderful. ?He referred me to UCSF in San Fran and helped me tremendously. ?I called and told his secretary I was a cushing patient and they put me right through to him. ?He diagnosed me on the phone with my dexamethasone suppression cortisol and ACTH numbers, told me I had a pit tumor before I even had the MRI. ?He's brilliant. Call him in Bethseda Maryland if you have any questions. ?He is a pediatrician but also deals with adults and endocrinology. ?I too believe my years of worrying about my son's rare disease and immortality created my worry tumor I call it. Now I've learned that worrying and stress do create much more harm than good and that we can control it with alternative means, yoga, exercise, diet, sleep, etc.
  18. My thoughts, wouldn't this be a wonderful opportunity for someone to contact her and discuss the effects of pituitary disease and cushings. She is a wonderful actress and person and might be a way to educate the public about our illness. Any suggestions on how to go about getting in contact with her?
  19. I went on DHEA about a year post op at the suggestion of my acupuncturist and have been on it for about9 months now. She suggested the 7Keto-DHEA because it does not convert the androgen hormones such as testosterone into the symptoms such as facial hair, etc. What I discovered was that at 100mg i was able to wean down 20 mg of cortisone in 6 months. I had a pituitary tumor removed 9/00 and didn't start weaning till 7 months post op due to many complications. I had and still have severe mouth incisional pain and damage to nerve endings where they cut me to get to the tumor. After seeing my acupuncturist for about 7 months, his wife who has chrohns disease and has been on DHEA for years, 100-200mg daily, told me to start taking it. It is a precursor to the adrenal hormones. I started out at 12.5 mg per day and 2-3 days before I weaned I upped it to 25mg ,etc. till I got up to 100mg. Felt more energy, increased libido, suffered for only a few days instead of a few weeks. UCSF doctor's talked me into going back down to 50mg because I might grow facial hair. I explained to them and brought them the idiots, literature showing that the 7keto,DHEA does not cause the testosterone side effects of facial hair growth. My psychiatrist told me to wean back up to the 200mg when I'm ready to start weaning the cortef. I didn't wean for a long time because my kids brought so many flus home this year and I am on zoloft, an anti-depressant, when it kicks in and I'm feeling less depressed, I intend to go back up on the DHEA and start weaning again this summer, when they are out of school and the stress of that is off, off camping and resting and not a lot of responsibilities. So DHEA is great and has helped me tremendously. I'm sure I can find some literature if anyone is interested in more info. Val from California.
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