vinesqueen

Questions, questions, questions. That's all I have. I have no answers, but I'm looking for them with my questions, questions and more questions. How many Turtles have been diagnosed with PCOS? How many Rabbits and Nomies have been diagnosed with PCOS? Is there a connection between being a Turtle and having this diagnosis? A few days ago, the question of whether PCOS was a red herring for Cushing's was raised on that board. And it's got me thinking and asking more questions. In many cases, a diagnosis of PCOS is made by looking at a list of symptoms and if you have X% of the symptoms, you are told you have PCOS wether or not you actually have the "string of pearls," the string of cysts on your overies. So many of the symptoms of Cushing's and PCOS overlap, with additonal symptoms for Cushing's. I have to wonder how many women who've been diagnosed with PCOS have Cushing's.

http://hytaipan.home.comcast.net/hubble640.html simply awe inspiring when put into a slide show like this.

I really needed to read all your kind words again. They are such a comfort for me right now. I can't rmember the name of the lab I had the work done at, the clinic won't return my calls, and yp.yahoo.com can't help with directions like " the lab next to the dr.s office" especially when it is in the neighborbood of lots of labs and doctors' offices. I still don't have any test results, they still haven't come in the mail. Any mail. I have resigned myself to not getting any word until the middle of next week, since I'll be driving most of Sunday and Monday. LaReine, I had to laugh about the tulips. I lived up in Skagit county for several years and never made it once to the festival, but I sure went before and after to have the fields to myself. This year was the first time since I've been away that I got home in time to see all my crocus bulbs in the lawn. I obviously need to plant many more bulbs.

I'm right there with your Sarah! It completely sucks that we have to be more educated than our doctors. But when I was first diagnosed with asthma, I had a young doc fresh out of medical give me the best advice - he told me that I would have to become an expert in my body, that I would have to know it inside and out, that I would have to become an expert in my asthma since I have to live with it, or die. So, I've taken that same approach to the Cushing's. I think part of the problem Sarah, is that we are not responding like we should. That because it is sooooo far out of the ordinary that docs aren't used to dealing with special folks like us. They see patients for what? 5 or 10 minutes and send us on our way. They don't, won't, can't take the time that it really requires to really understand the problem. But that's why we have to PUSH for answers. We have to be the squeeky wheels, we have to get the attention we NEED not just want. Metabolic disorders are really rare, so when doctors are presented by a bonifide Turtle, they jsut don't know what to do with us. We present a problem they don't know how to treat, because we don't respond the way they expect. Cushing's is thought to occur in .001% to .0025% of the population. TINY little number. Most endocrinolgists don't even see a Cushing's patient, so how can we expect to get the best care from a general practice doc?

just for fun, I decided to see what Greek God I was... I am Zeus, Hermes and Aries, all rolled into one! So, that would be... Athena! http://www.paleothea.com/zeus.html http://www.paleothea.com/hermes.html http://www.paleothea.com/ares.html

Okay, Angel, that prolactin, that's a sign of cushing's as is the tumor they saw! http://cushings.invisionzone.com/index.php? is the address for a cushing's support board. I'm finding it very useful, if a little confusing at first. It uses a different board structure there. LOTS of good information there. There are several blood and urine tests that need to be done. Did they do any follow up tests? I know that from what I've learned on that board is that it is hard to diagnose it, because there are several forms it takes. As for cortisol testing, push for it!

But my dear, you have been feeling invisbile, at least to the available male population. I don't think it is strange at all that you would be stopped to caputure your likeness, our weight has no bearing on our beauty. If we are beautiful at 400 pounds, then we will be beautiful at 300, 200 or somewhere in the 100s. And if you get that sort of attention now, you will only garner more attention as you become less invisible to the greater population.

what a sad week Megan! I am so glad that Lulu found her way to you, and I'm so sorry about your grandmother.

Sometimes we forget what a "real" portion size is. I know you were freaked out because you ate an egg and a piece of toast. An egg has about 70 calories, and a piece of toast, depending on the size of bread of course, has about 45 calories. Butter and jam add to the calories of course. So, if you have an egg, a piece of toast with a little butter, your meal will be under 200 calories, and a typical meal, assuming you are sticking to 1200 calories, should be at least 300 calories. We get this weird idea that we should be satisfied eating a few tablespoons of food for an entire meal, when in reality that rediculous for bandsters, unless they are super tight. Clementine, I am so sorry you are having a difficult time getting your band just right. It very well could be that you have a leak, or your fill person didn't have the experience. Or it could have been that you were imporperly fitted with the wrong sized band. And I agree with Kelly that just because a person weighs X that they should automatically get Y band. The one size fits all fits none theory applies here. You must get over your being shy because you are the only one that can speak for you, the only one that can push for you. You must take control of the situation, and if you don't feel restriction, then you ask to make sure there is no leak. The band is all about making a lifestyle change. We have to work it, not the other way around. 30 pounds since November isn't bad, but I don't know how long this plateau has been. You've been working out, so undoubtably, you are changing your body composition, muscle weighs more than fat. Have you dropped inches? Many people report that when they are not losing pounds they are losing inches. Nataly, you've been banded about 6 weeks, most people dont' get their first fill until their 6-8 week mark. It is too soon to know if it's not going to work for you. You've been banded 6 weeks, and have lost 12 pounds. What are you expecting? You have hit the top of the 1-2 pounds a week lost. You had the band and not a bypass, so your loss is going to be "reasonable" instead of having it fall off of you. Additionally, many people don't lose anything until their first fill, and some don't find it working well until their second or third fill. If you feel like you don't have much restriction, then get another fill, by all means. If you find you are a Turtle, then go to your doctor and demand answers. Do not let them push you off, saying "eat less" or something else equally rediculous. Push to have your thyroid checked. If that comes back "normal" then push to have your cortisol checked. PUSH, PUSH, PUSH for answers. No one else will fight for your health. No one else can, if you are able to speak for yourself.

Athena* I could talk about Athena forever, but I'll attmept to be brief. She's definitely important enough to have her own page. Athena was the Patron Goddess of Athens, the Goddess of Wisdom, and the Goddess of Weaving. She was the Goddess of lots of other things, too, but I'm being brief. She was also a warrior and another of the Three Virgin Goddesses. Her father was Zeus. Technically her mother was Metis (Goddess of Prudence), but it is generally accepted that she had no mother. Athena was Greece's favorite Goddess, and there are many stories about her. Read more about Athena. Like there was any doubt? Goddess of weaving, of course! Wow, "is generally accepted that she had no mother." I've always been my own mother.

I broke a couple of toes once, but I'm sure that pain is only a tiny bit of what you are dealing with, holy cow! I'm so sorry to hear about this. My mom has battled ingrown nails for years. Please check in with us and let us know how you are doing (((((Kebeerah)))))

Gina, this issue you are facing is pretty common. One of the skills we generally don't learn is how to take compliments graciously. And you have been given the opportunity to learn this skill in spades! I know it is uncomfortable at first, but you must smile, and say thank you. You are being forced to think well of yourself, and for many of us, this is a very difficult thing. How can we accept the esteem of others if we do not hold ourselves in high reguard? One trick that you might try is to complement 3 people every day. They might be co-workers, strangers, your family members or your fellow commuters. Give an honest compliement, but start small. Admire a hair cut or color, comment on a hand bag or shoes you think are great. Do this for a few weeks and you will be AMAZED at the results you get. Giving compliments makes it easier to accept the complements from others, even strangers. And you will be getting more and more complements. It is odd that the more weight we have the more invisible we are. As we lose that weight and bulk, we become more visible for a variety of reasons. Sometimes we gain more confidence in ourselves after we lose weight, and confidence attracts confidence. We've spoken about that on several threads, do some digging and see if you can come up with some threads to bump. Your choices are to learn to accpet the complements and attention, or gain back the weight so you are invisible again.

- Tortillas (white, wheat, corn?) I can eat all of them, but avoid corn, since it makes me HUNGRY - Salad (what kind of lettuce can you eat?) Any and all kinds, I prefer baby spinach, which isn't really lettuce... - Hard breads (pretzels, crackers, melba, etc.) All kinds, but I think everybody gets stuck on Triscuts at some point - "Fluffy" breads (pancakes, waffles, muffins) well, I think muffins fall under dense breads along with hearty breads like sour dough and rye, but I haven't had much desire for pancakes, waffles or muffins since I've been banded. I can handle some sandwich breads, but only 1/2 a sandwich. - Ground meants (turkey, chuck, sirloin...) no problems for me, but steak and some cuts of beef are tricky. - Shellfish/crustaceans (scallops, shrimp, crab, lobster, mussels...) Bring it on! - Hard cereal (grape nuts, oat bran, etc.) I prefer not to eat gravel. - Hard cheeses I've never met a cheese I didnt' like

Yeah, Kathy! road trip to help me pack! I've got the good stuff! French pressed Kenyan AA I'm fine with hot sauce. I don't use an habinaero sauce very often, and I find that serrano's are a bit too hot for me, but I've never had a problem with my band and hot & spicy.

Thank you everyone. I don't know if y'all know how much this board really means to me. I was raised by wolves, so this sort of support is strange and a little scary for me. I'm not giving up on school completely, I just need to take a short break. I find lately that words are difficult for me, what I mean to say does not come out of my mouth. The words that flow from my fingers feel like they make more sense, if only to me. I can't just go to his office because I'm here in Idaho, the garden spot known as Pokey, just like the jail. funny that.... I need to pack up my apartment Lisa, so I can move home, so I can live with my husband and son for a while. I need to not live by myself, need to live with people who love me and fill my house and home with laughter and dirty dishes. I need all my son's friends, my surigate sons and daughters. Your wonderful responses made me cry, but all in a good way. I have days where I'm completely freaked by this cushing's thing. Freaked that I might have it, freaked that I don't, freaked that it is something possibly worse, freaked that I'm a freak. My Endo thinks that I might have a masculinizing tumor, just what every woman wants to hear. It is just so hard to be me right now. I don't feel that the band has let me down. Not any more. I am actually thankful I got the band because if I had gotten anything else, I would be in worse shape than before. I know in my heart that if I hadn't been banded, they wouldn't have ever found this. I know I have a long journey ahead of me, harder than most have chosen for this life. But if I hadn't been banded, my life would have been considerably shorter, and as it is, it's only Short by marriage , as it should be. There will be no problem with my scholarship if I put off school for a year, I've already cleared that. No worries there.

Wheetsin, when I was breast feeing my Spudboy, my girls were a MM cup, and that doesn't stand for yuMMy. Having the girls shrink is an excellent victory for some of us. Congrats P'nut, I too hope some day to have that sort of NSV.

53% Dixie. I was in the Atlanta airport once....

This is what I wrote to someone on my cushing's board. I thought it was important to me. And as for you not being strong, I don't buy that for a minute. You are stronger than you know. Just by demanding answers you show your strength. Just by coming here and posting, asking questions and helping others, you show your strength. It's not a case of lifting the entire car at once, it is about lifting each little nut and bolt at a time, each little component one step at a time shows your strength. You only see the small pieces you do, and don't recognize the larger picture. You are stronger than you know, but I know how strong you are.

This is what I wrote to someone on my cushing's board. I thought it was important to me. And as for you not being strong, I don't buy that for a minute. You are stronger than you know. Just by demanding answers you show your strength. Just by coming here and posting, asking questions and helping others, you show your strength. It's not a case of lifting the entire car at once, it is about lifting each little nut and bolt at a time, each little component one step at a time shows your strength. You only see the small pieces you do, and don't recognize the larger picture. You are stronger than you know, but I know how strong you are.

... cortisol is the determining factor and that cortisol ( a potent steroid)can destroy or affect every organ in your body: skin, hair, heart, muscles, etc etc etc, diabetes, etc. ....and that you want to make sure this steroid does not destroy you ... (Judy from Phg http://cushings.invisionzone.com/index.php?showtopic=15360&hl=) I'm just so out of sorts, out of time, out of place right now. I'm leaving school for now anyway. I just cannot handle school, being away from my family, and my health right now all at once. Perhaps it will be different by the fall, perhaps it will not. I just don't know. And the not knowing is what is so hard on me right now. --sometimes I know that I am the very definition of patience, and other times I know that I'm the most impatient person on the face of the planet. The waiting for results right now is so very hard. I had my first round of tests 11 days ago, the DHEA, LH FSH and serum total testosterone. On the 11th I did the 24 hr urine free cortisol test, the famous pee-ina-jug test. Part of me thinks that I should be happy that the restults are taking so long, because it means that there isn't a problem with them, that they are all normal. But the defeatist in me says that the results were way out of normal, and they don't believe the results. I've been feeling like I have early onset of alzheimers, even though it doesn't run in my family. It is so hard to find the words sometimes. I notice it most when I'm talking, the words elude me, or are just flat out wrong. Sponker told me that he thinks I've always been a little scatter brained, which is probably true, but he said he has noticed that it is getting worse. We were trying to find cheap gas (as opposed to saving the money driving and just going to a near place, but that's what he wanted to do... ) and he kept pointing out to me that my words were wrong. We were driving past Park Place ltd, that car place with the exotic cars, when I pointed out the orange car. But the problem it wasn't orange, it was yellow. I sure feel like a hypocondriac sometimes. I know I've been one in the past, but usually it comes on after I've had something that they missed. I know I panic after something goes terribly wrong, and I worry about every little symptom. I know that many people with cushings are accused of making it up. Mike is worried that I'm going to end up making myself sick if Im not sick now. "the mind body connection." but I don't think he gets it. Someone had posted a very interesting thread on the Cushing's board about whether PCOS was a red herring, very interesting, and it's gotten me thinking about it.

... cortisol is the determining factor and that cortisol ( a potent steroid)can destroy or affect every organ in your body: skin, hair, heart, muscles, etc etc etc, diabetes, etc. ....and that you want to make sure this steroid does not destroy you ... (Judy from Phg http://cushings.invisionzone.com/index.php?showtopic=15360&hl=) I'm just so out of sorts, out of time, out of place right now. I'm leaving school for now anyway. I just cannot handle school, being away from my family, and my health right now all at once. Perhaps it will be different by the fall, perhaps it will not. I just don't know. And the not knowing is what is so hard on me right now. --sometimes I know that I am the very definition of patience, and other times I know that I'm the most impatient person on the face of the planet. The waiting for results right now is so very hard. I had my first round of tests 11 days ago, the DHEA, LH FSH and serum total testosterone. On the 11th I did the 24 hr urine free cortisol test, the famous pee-ina-jug test. Part of me thinks that I should be happy that the restults are taking so long, because it means that there isn't a problem with them, that they are all normal. But the defeatist in me says that the results were way out of normal, and they don't believe the results. I've been feeling like I have early onset of alzheimers, even though it doesn't run in my family. It is so hard to find the words sometimes. I notice it most when I'm talking, the words elude me, or are just flat out wrong. Sponker told me that he thinks I've always been a little scatter brained, which is probably true, but he said he has noticed that it is getting worse. We were trying to find cheap gas (as opposed to saving the money driving and just going to a near place, but that's what he wanted to do... ) and he kept pointing out to me that my words were wrong. We were driving past Park Place ltd, that car place with the exotic cars, when I pointed out the orange car. But the problem it wasn't orange, it was yellow. I sure feel like a hypocondriac sometimes. I know I've been one in the past, but usually it comes on after I've had something that they missed. I know I panic after something goes terribly wrong, and I worry about every little symptom. I know that many people with cushings are accused of making it up. Mike is worried that I'm going to end up making myself sick if Im not sick now. "the mind body connection." but I don't think he gets it. Someone had posted a very interesting thread on the Cushing's board about whether PCOS was a red herring, very interesting, and it's gotten me thinking about it.

Hi Kt, welcome to LBT. Thanks for the smile. I'm not in denial, not by a long stretch. And neither are my Turtle Tribe. But that equation does not work for us. I have been diagnosed with Cushing's, and I suspect some of our other Turtles have it as well. Some of us might end up with a diagnosis of metabolic syndrom, other's find untreated PCOS is having an effect on their weight loss journey. I was on 700 calories and less for a month while I was too tight. That month I lost 1.5 pounds, even working out as I was. When I finally was able to get to my clinic to get an unfil I gained 10 pounds in one week at 1000 - 1200 calories a day. Being physically active, I gained 10 pounds at that caloric intake. It doesn't make sense, not unless you have researched Cushings. And then that is quite a common story.

I'm so very sorry to hear about your sick little baby. I'm so sorry.

uhm, woot? :eek: great work Kathy!

Yup, 35 pounds in 15 months is definatly a Turtle