vinesqueen

well, I get headaches now that are so bad that I'm in so much pain I throw up. Different than migraine throwing up. Weird difference. See if you can get zofran odt for the nausia. They disolve on your tounge. I'm so sorry! (call me!)

Friday my buddy Monica and I had our cases presented before the Tumor Board. It's sort of like we have turned in all our tests, we've presented our case, argued and defended our side, researched and presented for examination for the most rigorous test we have ever presented for. And now it is out of our hands. It is like waiting for Finals, like waiting for the Masters board to meet, or the MBA. We think that after this they should just hand us another degree. I think I won't hear anything until next Thursday. I'm dealing with an Academic institution, after all. And school is my career, if you will. They have their own pace. And as compassionate as Dr. L is, when I call in the middle of a freaker/tweaker he's not interested in making it stop, he's only interested in getting me to TEST. How can I get to a lab and get blood drawn. Can I drive in the middle of one of these? Hell, I can hardly string a coherent sentence together and he wants me to drive to a lab. Don't get me wrong, I love Dr. L, but he is a researcher, and sometimes they have their priorities a little skewed. He told me that I was going to hate him, since his priority was to find out what was going on with me while I was in the middle of on of those episodes, not to make it stop. So, I can really appreciate it when folks are tired of testing, honestly I can appreciate it! Speaking of researchers, I'm still having mixed results with my experiments with licorice. I was able to wake up NORMAL one morning, but it seems I need to keep eating licorice throughout the day to maintain the normal status. I will continue to track my progress. Dang, this means that I better start keeping a lab book! dang it. Yesterday just before I went to bed I had a minor crash again. Like I was moving in slow motion. It was pretty funny. I figured that if I was doing tai chi during one of these slow motion phases, it would look like I'd completely stopped! HaHa! Too funny! Anyway, the rains seem to have returned here to the Pacific NorthWe(s)t (the "S" is silent) I went out and got a box of fire logs. I almost couldn't get the box out of the cart, and there was no way I could get it out of my trunk. I have to get cured soon. Good thing I have a "freakishly high amount of testosterone" in my system. Mike is going to Idaho today to get the rest of my stuff. I won't be returning to school soon. It's a hard reality. But soon is not never. And I realize that I won’t be using my spinning wheel there. I just won’t. And besides, that dry, dry climate isn’t good for it anyway. I’ve decided that when I return, I’ll bite the bullet and get room mates. I’ll just get housing in the new housing they built. It’ will be nicer than living in the old Travel Lodge.

It looks like the 3rd trip to OHSU was the ticket for me. I had high numbers all around! I've been in a very deep Low since my last trip out there for the last Dex/Crh supression test. I don't every have to take this test again, which is a good thing. Whenever I take the first dose it puts me into a minor coma. like clock work, 90 minutes after taking it, I'll be comatose for about 4 to 5 hours, then I'll wake up, but I'll be really tired. So, I've been Low, which means NO ENERGY. sleeping most of the time, but the acne dries out so that's a plus

Well, I finally got the report back from the neuro's assistant. I've been having terrible headaches now for a year. Some of them land me in the ER as "atypical migraine" meaning they don't know what the heck is going on. But they sock me full of stuff so I stop throwing up and duladin to kill the pain. Lots and lots of duladin. Anyway, he's decided that after reviewing the MRI & MRV that there's no reason for me to be having such terrible headaches. The according to the assistant, apparently, my headaches are solely caused by rebound from taking narcotics, and I need to wean myself off them. So, man those are some POWERFUL narcotics to be causing rebound headaches 10 months into the past! That's a powerful kickback to those pills! Over-the-counter pills don't do anything for my headaches so I don't even bother with them, and this apperently bothered the neuro. I have a constant 5 headache, excpet when it gets bad of course... Which is when my tumor turns off. Oh, and you want to watch a doctor get wiggly? Tell him or her your tumor you just turned off. They will either not believe you, or they will get the willies... Strength and Courage! Crystal

Congrats! Sorry I'm late!

I don't know what it is, or what it is for, but I understand your pain. It looks like all I'll lose with my band is 20 pounds. I have 60- 80 pounds about more to go, but until my Cushing's is cured, until my brain tumor is removed, that won't ever happen. I'm so sorry for your pain and your frustration.

Thanks Mandy, I decided to move everything to Blogger, part of Google. http://vinesqueen.blogspot.com/ So, in two weeks I will know more. I wish I had more news. I wish I didn't have to wait two more weeks. It seems that is how I have to do things, wait two weeks, then two more weeks. Then two more weeks. My DH tells me that it won't be much longer. That I have to have faith, because he has faith.

My mother said her gallbladder attacks were terrible, but I never had any pain with mine. only when they pressed on me. (poke me there again, and I'll hit you!) See if you can stay away from any food with fat in it. The gallbladder's function is to help break down fat, and it squirts bile. If you are blocked, then that could be causing the pain. But seriously, don't let the pain go to long, I feel for you hon, misery!

good luck Deb. Keep in mind that Geezer Sue's story is her story, just as mine is mine, Babs' is ... well, you get the point. All are the real story. You might want to look up JQPublic on this board. He's one of our "success stories." He's lost a large amount of weight, and hasn't been banded. I knwo we have a couple of "never banded" bandsters who've been successfull in their weightloss journey. And please do keep in mind that folks that don't have trouble tend to not seek help for the problems they are not having.

ROFLOLSCOMNHWLAST (roll on floor, laughing out loud, shooting coffee out my nose, hooting with laughter, and snorting too) Socially liberal, fiscally conservative Demo! Better dead than Red! Woot! (just kidding, both sets of grandperents were American Comunists during the 30's, Union Organizers) So, right now, I'm safely at home, in Seattle, but I will eventually need to return to my land of exile, SE Idaho, the land where Mormons go because Utah is too Liberal. :help: Now then, Some of you know I was a welfare mother when my first husband left me. It put me through my technical college and permitted me to get a great paying job in the tech industry, where I was able to get a job that alowed me to pay lots of taxes. I dont mind paying taxes for the good things that we need, like social programs that keep little kids and their mammas off the streets, warm, fed, and educated. And all those other happy things that we need and want. And for some of the stupid things that I dont' think we need, but I won't go into those here (gas and oil subsidies. Oops did I say that out loud?) So the reason I'm going into exile in SE ID is because I'm a recipient of a full ride scholarship, (THANKS EVERYONE!) funded through the National Science Foundation. At one of the symposiums we attend to get to know our future employers (our Federal Government) we met several of our new cohort for the first time. The first thing this one little boy says to me is that he feels that social programs are stealing money from his pocket, and that welfare progams should be abolished. Not the thing to say to a former Welfare Mother, bent on destroying the social fabric of the US of A... ... The guys who knew me had to just about physically restrain me... So I told him that he needed to quit the program, since it was a full ride program, and he was sucking at the teat of the American taxpayer, just the same as a welfare mother. That got a good number of spit takes going... Just saying "teat" at the dinner table with a bunch of Mormons... But one of the guys wanted desperately to move back to Portland where he could be a Conservate again. He hated being a Liberal in Pocatello Idaho.

sorry, I have to laugh. major facial hair (check) hyperpigmetation of the face (check) upper body obesity (check) Round face? (check I can see it from your avatar) do you have a hump or subclavial fat pads? (I look like I have lemons sitting on my collar bones) Do you have stretch marks? Ask your doctor if he diagnoses patients with high blood pressure or diabetis by simply the way they look. It's the same difference. Go to the Cushing's help site in my signature. Sign up for the board. We will help you find someone there. Send me a PM with your phone number and we'll see what we can do. I will be heading to OHSU in Portland again tomorrow morning so I'll be gone all day tomorrow, and most of this afternoon, but we will get you sorted out. I'm Vinesqueen on the Cushing's board too. I will be there for you, I am here for you. Strength and Courage

Carlene, if they don't know what they are doing, it's pretty easy. I was getting "fills" while I was in exile in SE Idaho. My surgeon had talked the interventional radiologist through the procedure. Because the band is under presure, if you don't get it just right, you can let all the Fluid out. In SE ID they used the floro and still couldn't get it right. I thought I'd ended up with 3cc in my band, because that's how much the radiologist thought he was putting in my band. But each time, he was letting out more and more. So I thought I had a leak. No, just bad fill technique. With Babs, if I remember correctly, they were going to just remove some of her fill, not all of it.

I've been thinking about this question the last couple of days. I would think that in the even of a slip, that they would not convert you then and there. If a converstion was going to be made, I think that it would be made after the slip had healed. I imagine that during a slip that there is some injury to the stomach itself, espeically if the slip goes for any length of time. But I really don't know.

Hi Chelley, I've had a full unfill. I'm not losing any weight, but then, I wasn't losing any before either. I had the unfill because of the nausia from my Cushing's

My DH aslo has the band. But this is "my" board, not his.

Damn Fee! You've done an amazing job. DON'T LET ANYONE RAIN ON YOUR PARADE (I hope that means the same thing there as it does to us Yanks...) Did you at least get your referal?

Geeze JQ! I know nothing about this. What did your doctor say? I will have to do research on this. Courage and strength my friend! Courage and strenth!

I think you should definately hold off on getting that fill until you get back from vacation. So many folks have trouble with it being too tight you don't want to be some where F-A-B and miserable and not able to get an unfill. Now, as for getting an unfill just before going on vacation, I think this is just asking for trouble. I think this mind set is part of the "band=diet=not-my-responsiblity." So many people like to keep their band sinched up so tight that they can only eat small amounts of food at a time. Small as in tablespoon sized meals, not reasonable portions. I think thise folks do not make the mind transfer to the lifestyle. I sure hope this is making sense.

Ah, fall, one of my favorite times of year. Thie air has a certian quality about it in the late afternoon. The geese and the ducks are migrating south, the swans are heading to their winter grounds in Skagit County near where I live. One day, my dad and i were out in one of his fields picking crab apples so I could make crab apple butter for him. He pointed out a string of geese winging their way across the sky. Daughter, there is a very sound scientific prinicple that explains why there are more birds in one arm of those Vs, do you know what it is?" "No Dad, I don't, please tell me!" A long pause, on his part. "Why Daughter dear, there are simply more birds in one arm than the other." I'm still laughing about that one, years and years after he's gone. (hijack HI DONALI!!!!)

Ok, now it's time for MY soap box... Why do they pay teachers squat? Because it is "woman's work." Any occupation that women do isn't deemed very valuable. We still make only 77% of what men make. Don't even get me started.

Hurrah for Mary B! Hurray! Y'all look so happy! Okay, this is what I want for when I'm skinny. or something similar. Of course, it's not like I'm really waiting... The only propblem right now is that my belly is bigger than my hips, so it doesn't really do me much good go have a beaded belt like this. But I do have this bra... only bigger than hers...

I had my gallbladder out before my band, by a few years. I needed about 4 weeks before I was feeling like my old self. My banding was a breeze, compaired to the gallbladder. I was horseback riding withing a couple of weeks of my band. I couldn't have even thought about doing that with the gallbladder. But then I wasn't sick with the band, I was with the gallbladder...

Testing for Cushing's involves 24 hour urine tests to measure the total cortisol released in your system during a day. Blood tests, that measure cortisol blood serium and ACTH are also measured. Midnight salivary tests are done to see how much extra cortisol is in your system at midnight. (this is done by chewing cotton plugs. I've never had a high midnight salivary number). Your system normally should have high amounts of cortisol in the morning, and none at midnight. Blood tests are done to meausre how much hormones are in your system. Dex tests are also done. Dex is a steroid. Whenever I take it, it shuts off my tumor, so I never supress. Most recently I had a Picc line installed so I could do blood draws every four hours to test my serium cortisol and ACTH levels. Not a lot of sleep happens, but I'm always on a High, so I"m not sleeping during these tests anyway. Unfortunately, Cushing's is very complex. There is no single test that will definately rule it out. If you get High results on tests that doesn't mean that you have it, it just strongly suggests that you need more testing. Any doctor that says any one test is definate proof is a fool and doesn't know a thing about Cushings.

Pinky, it might be that you see a change in the scale because of swelling from the PB. Swollen tissues that absorbe more water to protect the body. Just a thought.

From my Cushing's board, The Mayo clinic seems to be stuck still on insisting that folks have stria (dark purple stretch marks) as the definitive mark of Cushings. Cushing's help site http://www.cushings-help.com/intro.htm will have a list of helpful doctors in your state, or country, that can help. NIH, the National Instiitue of Health at http://endocrine.niddk.nih.gov/pubs/cushings/cushings.htm is also a good resource.