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Everything posted by Sylvia3

  1. Wow. I believe that after seeing what my PCP's peers said about her referring me to them for Cushing's.
  2. They posted my blog!!! 772.July 24th, 2008 11:35 pm I have read through all of this and it is a really charged topic. I want to address this to all of you caring doctors struggling to do the right thing. Talk to us! Don?t hesitate and personally, I don?t really care how you bring it up. Here?s the thing, I might cry, it may be uncomfortable for you because I am crying but I can talk and listen and cry at the same time. It?s not that big a deal. Then LISTEN. Really try to get past the judgement that is stuck in your head from the last patient that looked like me who lied to you about her intake or the one with diabetes that never really followed your instruction. LISTEN. You may learn that I am doing the right things and there may be an endocrine problem or that there is an emotional problem festering below the surface or that my appetite is out of control, these are the things that need to be adressed and these are the things where you can make a life changing difference. I don?t think that obesity is not a disease. It sure is a pretty big symptom though. Imagine I came in to your office, thin, attractive with a really deep tan that can only come from 3 hours a week in the tanning bed. You would say something. You would tell me about skin cancer, premature aging and long term danger. You wouldn?t say I look too dark. Most likely it would be ?So, do you want to tell me about your tan?? Same thing.. ?Do you want to discuss your weight?? (Then I burst into tears?) That wasn?t so hard was it? I saw a new doctor who said that very thing? ?Do you want to talk about your weight?? True to form, I burst into tears. Then told her about 5 years of gaining crazy amounts of weight, food diaries, diet doctors, marathon training and was surprised that I was tearing up more out of relief that someone wanted to hear about it more than the shame. Shoot. I KNOW what I look like! I KNOW where I shop! She LISTENED and then sent me for some labs and told me to go home and look up Cushing?s disease. I am one of those, gained all kinds of weight from a little tiny pituitary tumor. I also have all the horror stories of the doctors that lectured and passed judgement. I could have avoided years of pain and abuse if one of the earlier doctors had listened but my point isn?t to bash those doctors. They aren?t reading your blog. They aren?t worried about trying to get it right or do it better. Besides, everyone has a similar story about a bad airline flight or shopping experience. There are a lot of folks out there that don?t help. There are a lot that want to. I see the struggle you are in and appreciate it. On the other side of it. As your patient. I need to do my job. No matter how much I don?t like it, I should be dead honest with you. Hopefully, there is a relationship that is neutral and not judgemental where it feels safe to be honest but we are human. Even if I know you won?t like it, I owe it to myself to be honest and to give you all the data I can so that you can help me. Doesn?t matter if we are talking about pain killers, depression, sleep, sex whatever. As your patient, I know you aren?t psychic. I want to be healthy and if I want to be coddled I can go to the spa. I will keep up my end of the bargain and be as honest as I can no matter how hard. You keep up your end and listen. ? Posted by Sylvia
  3. The gloves are off! I wish I thought to copy my response, I'll keep my eyes out for it. If they post it then I will copy it. It felt really good to respond to that blog. Probably a lot cheaper than therapy too!
  4. Mary, You and Robin are dragging me kicking and screaming into the 21st century! I posted a reply to that blog.
  5. Vision issues are a classic symptom of a pit tumor... it's a start. At least someone is talking about it and even the pitiful amount of tests he is talking about is still twice as much and 3 times as many as any of my local doctors would let me test. It's a tiny step in the right direction.
  6. That is so on the money! Good for her and you and everyone else that spoke up.
  7. It does make me nuts though. I used to be thin and see things like Greatest Loser which is a great inspirational show and think that is wonderful but how does someone gain that much weight to begin with? How do they finally get to the point that enough is enough? Now that I am obese and see the other side of it, I am sure it isn't just a Cushing's thing. There is almost always a reason behind the weight gain but people are so beat down by it all that it is easier to accept that this is your fate than to endure any more critisism or worse, get ignored like you don't matter. You are invisible in the world and just fat and disgusting to your own doctor who should know you and be smarter than the rude sales clerk down the street. I can count on 3 fingers the people that have told me that they did it to themselves, enjoy eating and are OK to live with the consequences. Everyone else is totally miserable. I guess my ramble is that while I agree with the good doctor, tough love is total BS. But - No matter how you want to talk to the patient, DO YOUR JOB and find the cause. Secondly, you better be damn sure that Mrs Fields is the culprit before you start accusing. That just makes you predjudiced and ignorant and that is sure something we don't need more of in the medical field or any other.
  8. Robin, you ROCK! Wanted to add, I'm sure this guy feels a little picked on when all he wanted to do was talk about basic obesity and you have proven and will continue to prove, there is no such thing as basic obesity. There is always an underlying cause. Most people that t gain a 100lbs know it, are mortified by it and know about thinks like excersize and nutrition. They also know that their health is at risk which is why they are in the doctor's office to begin with. Doctors need to stop judging and start helping patients look for real answers.
  9. If there were a drug that could treat Cushing's, I would bet money that more doctor's would suddenly be more open to testing for it since there would be a treatment that they could understand.
  10. Cherri, I forgot about that. Five years would have been the entire time that drug was available! How much weight did she need to lose if she was on it for that long and if she was that overweight, I'm sure there was more going on with her before but at the time, my doctor said that it was know to cause heart problems and I had an EKG every month. I don't think I was on it very long either but still. Scary.
  11. That's frightening! I have tried that diet drug and really wished it was still around when my weight piled on. Wonder how many of us have also tried it?
  12. I love that! You can literally starve to death while remaining obese. Hope doctors read blogs!
  13. ?The doctors say they have found it at a very early stage. They want to monitor it at the moment and not operate. Obviously it?s very serious and they are not unconcerned." Sounds like that same old stuff to me. "Blah Blah Blah it could be serious, let's just wait and see." Until it is!!! Grrrr!
  14. I saw my vet just before I left for surgery and she said that Cushing's is fairly common in dogs and horses but very rare in cats. I keep hearing about these drugs coming out to treat Cushing's but can't seem to find out anything about them, like how do they treat Cushing's? Do they block ACTH or supress the adrenals and do they destroy the liver like the other known drugs? I guess we will know more next year. Again, grateful for anyone working on anything to do with this awful disease.
  15. I'm not sure what this is saying. Maybe I missed it. I wish they would be more clear on the types of tests and that the patient needs to do most of them and more than once to rule it in or out. I know, baby steps, at least someone is talking about it at all!
  16. I love that man! Thanks for sharing, when I had a leak after surgery, one of the MDA doctors mentioned a shunt as a possible treatment but I didn't understand it until this post! Hope all goes great with you on this!
  17. Makes me wonder if I hang out with Britney, Lindsey and Paris for a while if that will get me that last sky-high I am looking for!
  18. I bet several people (myself included) would be happy to pay for the jugs. Beats trying to save urine in different containers only to thaw it out and transfer it later because you are still waiting for the doctor's office to send them.
  19. I have been wanting to say for some time how grateful and proud I am to know you all. I sometimes see posts on the board from people that are really in emotional pain, I have posted a couple myself and every single time, someone always responds with something helpful or just showing that they care. Lately, I have been battling my own demons and haven't responded to many of them, was in too dark a space of my own to have anything valuable to say (at least that is what it feels like in that space), as we go through our cycles, it is probably like that for many of us.but there are always others that jump in with kind and encouraging words. It is just really comforting to know that there is a whole community that really cares when someone is down and asking for encouragement and that we take turns for each other. Even the posts that are just read help the rest of us. I really think being part of this community alone is a lifesaver for finding a way through the Cushing's maze as well as dealing with the darker aspects of it. Thank you!
  20. I can totally picture ending up in a suicidal state if what I am going through didn't have a name. To feel progressively worse, lose your vision, have chronic pain everywhere along with never ending headaches let alone losing control over your body and looking and feeling ugly and to be told that it is your fault on top of it all? Who wouldn't? Which illustrates another reason this disease needs to move from the "Rare" disease catagory to the "Hard to diagnose" catagory and have doctors get more educated about this. Of course, of their patients that did check out, the local docs are probably saying, "Well they were depressed and overweight and just not interested in helping themselves which is obvious because I told them to diet and excersise and they just got bigger. If they really don't want to help themselves, what could I have done?" Thank God for this site! Mary, you are a life saver in many ways!
  21. Thanks Mary, This is a really good article!
  22. Hey Renee, Just wanted you to know that I was thinking about you and hoping you are feeling better. You are an amazing person!

  23. Thank you Mary! This is exactly what Oprah and Dr Oz should do a show on! Maybe not devote an hour to Cushing's (since it is to rare, NOT) but an hour to explain that if you have honestly tried to lose weight and have these other symptoms, see your doctor, your health my be at risk. Hello, Oprah?
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