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vinesqueen

LAP-BAND Patients

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Blog Entries posted by vinesqueen

  1. down 5 pounds this week

    · vinesqueen · 08/21/2006 22:02

    Ok, I have to laugh, really really hard. I had all the fill removed from my band, because of the nausia I've been fighting, so I don't have the extra protection from over-eating. (the band is purely restrictive) I've been on a rip-roaring High and so I expected to be gaining weight. I also have been drinking Rum and light fruit beverages, becuase I wanna. I've also been eating ice cream and pasta. Yes, that's right, I've been eating pasta this week! Pasta and bread, everyday! :hungry:
     
    I'm down 5 pound this week. :cool:

  3. freaker/tweaker

    · vinesqueen · 09/12/2006 17:40

    I've had three of these episodes now, where I'm a freaker/tweaker for 2-4 hours, but it seems longer.
     
    I just need to know that someone else experiences something similar to this, to know that I'm not alone.
     
    I become frantic, frenetic, like every molicule in my body is vibrating at double what it should be. Can't think, can't make a coherent sentence, can only shake and pace and move and tweak. The first time I was a little euphoric, but the last two times I felt out of control in a bad way.
     
    I don't doubt that If Iwas in public when this happens that I'll be arrested for public intoxication use of meth, or speed or crack. And not in a good way either.
     
    This goes way beyond being "normally" Cushie energetic. There is no way I can get anything done, it's all I can do to not start screaming or yelling. I spent over an hour walking in a circle in my kitchen. I'd get dizzy, so I'd switch and walk the other way. I ended up leaving the house and walked around my block twice, at a speed-walker pace, crying all the while, tears streaming down my face. I'm sure the neighbors were alarmed at my erratic behaviour. *I* was alarmed.
     
    When I"m in the teeth of one of these episodes I cannot hold a rational conversation. I can't even follow a simple one, not really. I repeat myself. I'll say the same thing two or three times, usually the end of the sentence I'm trying to say.
     
    I also get TERRIBLY thursty, and end up drinking a couple quarts of water in one go.
     
    Last week when this happened, I was in the middle of my 32 hour blood draw, and ended up with an ACTH of 59 and 60. Chris at least got to see how bad I was, at my very worst.
     
    I called Chris, not sure how I managed to punch the buttons since my hands were shaking so bad. She told me to start yet another UFC, do a salivary, and get a blood draw at the end of the UFC. I dont' want to test anymore! I wanted it to STOP! I don't want to have another one of those episodes EVER. But all Chris could do was tell me to test. Of course, I wouldn't have ever thought to test while I was in the middle of that. Even though it's happened three times now, it would have never occured to me to test.
     
    When I had regained my brain, after I stopped tweaking, I told my son that he was going to have to make me a drink. He was going to have to feed me rum until I stopped tweaking. I know that alcohol and Cortisol "eat" each other. I just feel like I cannot go through another one of those episodes. I just cannot face it. I know it is a danger signal to think in "black and white" concepts, but I'm just so terrified of those episodes.
     
    But what also frightens me is the thought of the crash that is bound to follow, either this afternoon or tomorrow. Where I'll lose conciousness, where I'll have "extreme weakness" with the crushing pain of the headaches and the back pain will burn my very soul.
  4. When i started this, I thought it would be a trivial matter to get diagnosed, and then treated. Oh, if only it had been that simple.
     
    It's been a real struggle. Doctors who feel that they know best, doctors who won't test because Cushing's is too rare, doctors who won't test because they have a stick firmly wedged up their butt.
     
    It's so hard to read about seeming everyone else's successes, to know that until I get this tumor out of my head I will never have any success losing weight. I go away from LBT, and yet I am drawn back. Perhaps it is because I keep hoping that I too will once day have success, that one day I will be a size 14, not a 24.
     
    I wear the same clothes I wore before I was banded.
     
    But at least I know I have answers. I must hold onto the thought that I will have success.
     
    But it is harder still for me to know that other people are not seeking answers. That they are content to accept the band as yet another failed gimic. That they are not willing to push against the resistance that doctors put up.
     
    Is anyone else fighting!? Or am I alone in this? Fight Turtles! Fight!
  5. they wouldn't send me home with a precription for the dex, so I'm still in the "test" phase. I can only hope they got the numbers that I need.
     
    Yesterday I had another one of those frantic freaker/tweeker episodes. Heh, I'm sure I'd be arrested for being intoxicated in public! I ended up walking in a circle in my kitchen for over an hour... When my brain started to work again, I taught my spud boy how to make a drink for me. He's not wild about giving me booze, but alcohol and cortisol "eat" each other, so I can only hope that one or more stiff drinks will bring me out of it.
     
    I'm so tired of this. I went to bed lastnight at about 3 am, was wired until about 4:30, up again at 6am and then at 8 am again. I am pretty sure this UFC will be really high, but I don't "need" any more high UFCs....
     
    And I'm rambling again.
  6. This last Thursday was Cushie fun day for those of us who were down testing, (and Jaimie too!). So that meant Jamie, Monica and me, as well as my non-Cushie friend Traci.
     
    We went and had girlie, girlie manicures and pedicures at a beauty college. What a treat that was... We were originally going to go to one place, but when we got there, we decided to try a different school.
     
    One of the things I do to amuse myself is play "Hump or no Hump" where I try to figure out if someone has a hump, and if they do, do they have any other Cushie symptom... One of the women at the school, looked mightly suspicious to me, and I pointed her out to Jamie and Monica. Since Monica nad i were wearing short sleved shirts, our white stockings for our PICC lines were right there, out in public and everything. She wanted to know if we were in a club or something, so I opened my big mouth and blabbed all about Cushing's, and why we were in Portland.
     
    Turns out this woman had most of the Cushing's symptoms, but like a good girl listened to her docs when they told her that her only problem was the was fat and lazy Monica and Jaimie are WONDERFUL Cushing's Ambasadors, and they gave this gal all the contact information so she could lean more about Cushing's
     
    After we were done with our Ambasador duties and our beautie treatments, we headed out to try to find someplace for lunch. After getting lost a few times, and not finding any restaurants that suited our needs, we finally found a Bosnian grocerie store with a deli. The food was DELISH! and we all swapped slices of our sandwiches. Everything was really yummy, well, I have to take everyone's word that the eggplant was yummy, but there you go on that. After we filled our tummies, we went grocerie shopping and bought all sorts of wonderful European treats. I got a spice mix that I'm going to try tonight, I have no idea what's in it, because none of the ingreedients are in English.
     
    We had such a great time, Monica was out of her Low by this time, and I'm convinced that the Dex helped mitigate the worst of my Low that I swung into on Wednesday. (stupid cyclical grrr)

  7. Week at OHSU.. no CSS

    · vinesqueen · 09/09/2006 02:00

    I did NOT have the CSS like I thought I was going to, nor have I met Dr. D. There is a possiblilty that I will meet him tomorrow, but I'm not actually holding my breath. I don't know why I didn't have it after Dr. L said last Tuesday, and now I feel somewhat foolish for saying that Iwas going to have one.
     
    I've had a great visit with a couple of Cushies who were in town! One of the husband is a hoot and a half, and My husband and I had a good time geeking out with him at Lunch. But poor cushie-wife was in a Low while I was Sky High...
     
    I got really good at drawing my blood for the 32 hour draws, and my dear husband was ever so thankful he only had to play messenger service, not actually do the blood draws.
     
    One thing I figured out is to make up all the packets for the tests as soon as I got my orders and supplies. It was VERY anoying trying to dig out everything for the 4 am draw, especailly since I'd made the kits ahead for earlier draws.
     
    Hopefully I won't be doing another 32 hour test, but if I do, I'm prepaired.
     
    The other thing I learned was to bring an insulated no-drip coffee cup. Being from Seattle I only have about 8 or 10 of these things about the house, and it was so much easier for my hubby to just take the cup filled with ice to the ER than to try to worry about an ice bucket and random ice going around those really sharp corners up the hill to OHSU. I think next time I will bring small baggies to put the tubes in when they go inside the insulated coffee cup.
     
    Tuesday I had lunch with a cured Cushie and her cousin, and I could feel myself spinning up faster and faster. I know that I must have appeared to be a speed freak, or a coke-head as fast as I was talking, and as tangental as I was. They are absoluet dolls, and it was helpful for me to know that they had a darn good idea of what was happening.
     
    So, I go up early for my 2:30 appointment at the clinic and I'm suddenly spun WAY out of control. Patty at the front desk wanted me to fill out the "why are you here" paper work, and I couldn't figure out what the heck I was there for. I couldn't think, I couldn't concentrate, and I think I wrote down something like "I'm here for cushing's but my brian won't work anymore, help" So I get back to the room, and my blood pressure is the highest it has ever been in my entire life, I'm crying, and I can't stop moving! I couldn't stop pacing, shaking my hands and head at the same time. I was a freaking out, and not having a good time at all. Chris had me do an imediate draw, but I had to have her help because I was so frenetic. I explained that I've been like this before. Or at least I tried to explain that.
     
    Frenetic is the only word for how I felt for close to three terrible hours.
     
    Chris had me draw my blood at 3, 4 and 5 o'clock. I'd done one at Noon, and then the regularly scheduled one at 8. I can only hope and pray that they cought something. Chris wanted to know if I've ever done that before, and yes, all the gods and goddesses help me, I've been that way before. I finally started to calm down a few minutes to 5, but I was still mighty spun High.
     
    So, Wednesday, I started the Dex. Before I started, my back hurt so bad, I was pretty sure the crash was on it's way. My husband and I decided that we would kill some time by taking a drive up to Mount Hood, but by the time we got to the Village of Government Camp, an hour or so after I took the first dose of Dex, I crashed as hard as I was afraid I was going to. For about 4 hours I was completely out of it, with a few dips back to lucididy. Or what I thought was lucidity. My brain would work, but it was too much effort to say more than a few words. I don't think I've ever sat still that long before, not moving a muscle.
     
    He called Dr. L, but my symptoms were bad enough to need to go to the ER, but that I needed to be watched. Since I'm staying with my friend here, who's mom just happens to be a nurse, Mike make the call to go to their house early. He had to half carry me to the Mom's bed, where I slept for several more hours.
     
    Then Bing! I wake up! I'm alert and my entire body functions just like it is supposed to.
     
    But, being on the Dex, I don't have the BRUTAL headaches that normally accompany such a crash. That was significant, all by it's lonesome. Dr. L told my husband that the dex would make things better. Or make me feel better, anyway. I don't know if there is a difference there.
     
    I was really afraid that I was going to crash as hard as I ended up doing. I knew that as High as I was, my Low would be that low. But the amazing thing is that I didn't have the headaches or the back flank pain I normally get when I crash. I know I said that before, but I wanted to repeat myself because it was so significant.
     
    Since I've been on the Dex, I feel GREAT! I mean really wonderful. There have even been times where the washing-maching noise in my head has completely stopped! It's been amazing to have that noise shut off, even if it's only for a few hours at a time.
     
    I don't know what to expect tomorrow when Chris shoots me full of that stuff to see if I suppress or not. I don't know if it is going to call the head-aches that the Dex has been able to put off. I just don't know.
     
    But one thing I am going to do is ask for a prescription for Dex! It makes me feel.. like a normal person. Like I've been able to strike a wonderful balance between that High and Low. These last couple of days have felt nothing like when I Swing up High from my Low, because I know what those feel like. These last couple of days I have felt like I think Normal is supposed to feel like (except the part where I have to get up at 1 AM to take the dex or the 4 am Potty trips.... I'm pretty sure that Normal doesn't include those
     
    The last time I did the dex test, it didn't seem to have any affect on me. Nothing that I could detect anyway.
     
    But oh mamma! What a difference this time! I feel absolutely great on it. I think partly because I was headed for a land-me-in-the-ER crash, and this time, while I did have an extended period of "extreme weakness" I haven't had the terrible headacke that I normally do.
     
    How terrible to have a normal headache. Sorry, but that's just odd to say that. To be like that.
     
    After the Terrible High I was on Tuesday, this crash should have been just as bad, but since I've been on the Dex, no headache! No brutal back ache!
     
    I wonder if I'll be able to talk them into giving me a precription for it to take home.
     
    It is wonderful to not live on peracets for half the time. Just wonderful.
     
    Anyway, sorry for such a long post.
     
    I prolly won't post again until Saturday. I'm still in Portland at my friend's place. Hopefully I'll be able to leave mid-afternoon. If it gets much later than 3 pm I'll have to stay another night because I cannot see in the dark. When you can't see in the dark, you dont' get to drive in the dark. :faint:
  8. Hi Campers! (hi Crystal!)
     
    Ok, I'm heading back down to OHSU in Portland tomorrow early morning. I have to be there at 8 am, so we have to get a very early start.
     
    I just wanted to give all y'all a quick heads up. I had a mid-line placed on Friday (it was pretty cool learning to draw my own blood) I'll be doing blood draws every 4 hours, I'll be meeting with the neuro-surgeon Tuesday, and I still don't know if I'll be having the CSS Wed or not. Because I hit a High on Thursday, they had to scramble to fit me in and get me tested while I'm still High.
     
    Keep your fingers crossed for me that my High stays all week. Hopefully this means that I'll be in for brain surgery really soon! Yes! Hopefully this means that Pitunia will be given her walking papers and that unwanted B*tch will be history!
     
    So, here's hoping I'll be like the majority of other Cushies, I'll have the tumor out and then drop 40-90 pounds in a matter of months!
     
    Anyway, I'll be gone for a week, so there won't be any update in my journal while I'm gone.
     
    bu-bye!

  9. CSS Bound

    · vinesqueen · 08/31/2006 04:36

    I met with Dr. L down in OHSU yesterday.
     
    I have enough high UFCs, which DR. L says are the tough ones to get. I just need the high other numbers. I will be going down again for the full round of tests, since my last time there I was on a Low. Instead of going on their schedule, I'll be going on my schedule.
     
    I'm not sure when my next High will hit. I've been on a terrible Low for over two weeks now, or at least I think it's been two weeks, I don't remember going on a good raging High in the last couple of weeks. I might, but my brain isn't working on all cylinders lately.
     
    So, when I start heading High again, I need to call Dr. L that I'm coming down. I'll be doing the full week's work-up, including the 32-hour blood draws (every 4 hours), and a CSS with Dr. D.
     
    "Cavernous sinus sampling (CSS) is highly accurate in distinguishing Cushing's disease from the ectopic adrenocorticotropin syndrome and in predicting intrapituitary tumor location." So basically, the CSS will tell the surgeons where to look for the tumor.
     
    I met Jamie and Mars and Mars' mom for Lunch. It was really great to meet y'all, and you really helped me. I was such a basket case because, well, I was/am Low, and I think anyone would be more than a little emotional just before a big appointment.
     
    But the key is to get High.
     
    Anyway, I just wanted to give y'all a heads up.
     
    Oh, and this morning I got a call from the lab for the local Endo (the one who put me on the Mediterainian diet because I need to lose weight. You remember him...) they did the tests on one of the UFCs WRONG. I have no idea what they did wrong, but there you go. I told the lab tech that I'd be in when I'm High, and not before. She was kind of taken aback, but there is no point in doing a UFC when I'm not High. At least not for that Endo...
     
    Oh, after sleeping today until 11 am, then drinking two giant cups of strong coffee and faling asleep in the middle of drinking one of them... I slept for another couple of hours. Then I went to my husband's company picnic and rode my first ever Jet ski! It was a blast, and I went fast enough that I thought my glasses would fly off! It was so much fun, and I'm gonna do that as soon as I can! Of course, when I got back, the first thing I did was change into my jammies and bed where I napped abit.

  10. OHSU, part II

    · vinesqueen · 08/29/2006 06:37

    Tomorrow I go see Dr. L at OHSU again. A couple of weeks ago Lynne called me and told me that they want to see me. That I didn’t need to test any more. I guess when they tell you that it’s because they have all the data they need or want.
     
    Part of me is so afraid that he’s calling me down to tell me that there is nothing they can do for me. That I don’t need to test any more because there is nothing wrong, at least nothing wrong that losing weight won’t fix. Oh sure, if only I could lose weight.
     
    My husband said that I shouldn’t worry, that they wouldn’t have us drive 3 hours plus each way, just to tell me that there is nothing more to do. He figures that Dr. L would just dump me over the phone, like any bad relationship.
     
    My son asks me every day when are they going to take this thing out of my head. And then he either punches me in the arm or bitch-slaps me, or attempts to anyway. That’s one way he can tell if I’m High or Low… if I’m High there is no way he’s going to count coup on me, no way. But when I’m Low on the other hand… well, he knows that I’m going to be moving in slow motion, tai chi slow… He’s got a long way to go before he counts enough coups on me, that’s for sure; I’m so far ahead on the coup count he will never catch up.
     
    Last week was really rough for me. I was very, very Low, and my headaches were beyond reasonable. I was temped to go to the ER a couple of time, but it wasn’t until Friday night when I was throwing up that I went. I’d taken two phengren during the day, but by 8:00 pm I was throwing up, or at least I was giving it the old collage try. After the fifth dry heave session I gave up and had Mike drive me to the ER. I didn’t’ want to go, but I couldn’t’ stop heaving, and I couldn’t keep anything down.
     
    We had to wait for over an hour in the waiting room, so many sic people on a Friday night. The doc thought it was another migraine, but this time I didn’t have the weakness, so I could explain exactly what the headache felt like. These headaches are nothing like migraine, but something more. I can only hope that when I finally do have the pit surgery they will go away.
     
    Anyway, it took the nurse three tries before she was able to start the line. But she used lidocane, and besides, my head was in so much pain I don’t know that I would have even noticed the IV going in. Yeah, that bad. The doc wasn’t convinced that I’m not having “atypical migraines” so she wanted to try a combination of phenegren and benidryl. She said that was a sure fire way to knock out a migraine. Well, like I said, it wasn’t a migraine, and no it didn’t work. So she ordered a large dose of the narcotic for me. She said they were done pussy-footing around.
     
    On previous trips to the ER they gave me the usual small amounts, then had to repeat several times before I was beyond the pain. The last time they gave me a double dose, but again, had to keep repeating the dosage of the medication. This time they just game me a large syringe of the good stuff, lowered my bed and put me on oxygen. I have no idea how long I was knocked out, but it worked. I didn’t have a head ache the next morning. You have no idea how wonderful it is to wake up without a headache. If you do know, you have my deepest sympathies.
     
    Before she gave me the injection, we talked about pain management. She sent me home with a prescription for the highest dose percacet they make, a big bottle. She wants me to keep on top of the pain, and to not let it get away from me. So, now I don’t let the headaches get to far into the really bad range before I start managing the pain. No more “riding it out.” No more being the tough girl. She also had the radiology department make a CD of my CT scan from last week. We thought I was having a stroke or a TIA because the right side of my face was melting.
     
    I see the neurologist in a couple of weeks, but tomorrow I go to OHSU to see Dr. L. Back to that worry.
     
     
     
     
    And now for something completely different…
     
    The chinchillas are my husband's pets, but I've been training them to get used to being handled, so they will willingly come to me in their cage, because they know I always have a treat for them. Tonight I decided that I'd start working on them to see going in their balls as a happy thing, so I put treats in them, and let it be their decision to go in the ball, or not. Usually my husband stuffs them in there so he can clean their cages, very high adrenaline stuff...
     
    I was able to coax them into their balls and they had a good roll-around. Now I have these basketball sized balls roaming freely around my house. One of the chinchillas is really adventuresome, while the other got himself stuck between some pillows and boy shoes...Chilly got out of his ball, and it didn't take much effort to catch him. Spud, my son, scared him under my Chase lounge then I had him turn on the light, and I got one of the millet sprays to try to coax in from under it. Instead, he just crawled up between my arms as I was kneeled beside the chase
     
    Chilly let me pick him up without any fight or struggle. He wasn't interested in the millet, he just wanted me. He didn't struggle at all while we walked to the cage, all the while I was telling him what a good boy he was. Then he stretched out on one of the platforms, like they do when they are hot.

  11. Restless legs

    · vinesqueen · 08/22/2006 00:07

    I've had restless legs all my life, so does my mom. I've found that if I eat LOTS of broccoli it seems to help. Unfortunately, not even I can eat 8 servings of broccoli a day/night. I take extra folic acid supplements and that seems to help. My mother read an article in Prevention magazine about 800 years ago and they suggested extra folic acid as a possible treatment/cure.

    My entire bed gets destroyed when I sleep, On the nights I don't/can't sleep, I'm absolutely astounded that when my husband get up, he can just smooth down the covers on his side of the bed, and of course, mine hasn't been touched. When I sleep alone in a bed, everybody's side gets messed up!

    I've been taking Mirapex for about 3 years now and it really makes a huge difference in my restless legs. The difference is in getting to sleep, or being miserable until I drop from exhaustion. You see, for me, when it's bad, it isn't a case of wiggly legs, but flailing about like a woman possessed by demons. I'm sure I'd have been burned at the stake!

    When I'm feeling compelled to audition for the Rockets, I find it's just easier to get up and high step round the house until I can't move another muscle. (Usually only when I run out of the Mirapex.) If I lie on my tummy, I just do flutter kicks, like I'm swimming, then my husband kicks me out of bed. Not really, but I’m sure he wants to kick me out on night like that. Instead, I take pitty on the poor man, and go wiggle and vibrate in the kitchen until I’m ready to drop.

    Someone suggested heavy blankets to keep one's legs quite... what torture that would be for me! My ex-husband would get fed up with me and my legs and would try to physically restrain me... what torture.

    As far as I know, RLS and panic attacks have nothing to do with each other. To give you an idea of the difference between the two, consider these the following:

    RLS is sort of like that guy who sits next to you with his leg wiggly, and just won't stop wiggling it. Bouncing that knee, like there was an imaginary baby being entertained. Wiggle, wiggle, wiggle, wiggle, wiggle, wiggle, wiggle, wiggle, wiggle, wiggle, wiggle, wiggle, wiggle, wiggle, and wiggle.

    Panic attacks, on the other hand... AHHHHHHHH!!!!!!!!!!!!! Impending DOOOOOMMMMMM and AHHHHHHHH!!!! Impending DOOOOOMMMMMM!!!!!!! Impending DOOOOOMMMMMM!! and AHHHHHHHH!!!!! KIDNAPPERS!!!!!!!! and AHHHHHHHH!!!!!!! Impending DOOOOOMMMMMM!!!!!! and AHHHHHHHH!!!! SPIDERS IN MY SHOE!!!!!!!!! and AHHHHHHHH!!!!!!!!!!!!! and AHHHHHHHH!!!! MISSING BABIES!!!!!!!!! and Impending DOOOOOMMMMMM!!!!!!!!!! and AHHHHHHHH!!!!!! DEATH !!!!!!! and AHHHHHHHH!!!!! Impending DOOOOOMMMMMM!!!!!!!! and LOOKOUT!!!! CAR CRASH!!!!!!!!!! and AHHHHHHHH!!!!! SPIDERS!!!! Impending DOOOOOMMMMMM!!!! and AHHHHHHHH!!!!! WATCH OUT!!!!!!!! and AHHHHHHHH!!!!!!! DOOOOOMMMMMM!!!!! and AHHHHHHHH!!!!!! Impending DOOOOOMMMMMM!!!!!!! And DANGER!!!! DANGER!!!! DANGER!!!! DANGER!!!! DANGER!!!! DANGER!!!!

    But that's probably just me.

  12. crazy gardener lady

    · vinesqueen · 08/20/2006 22:16

    Highs and Lows are so personal, and some of us find our Highs and Lows merge into one weird feeling. I'm lately finding Highs and Lows crossing over into each other.
     
    Right now I'm on an insane High. Wednesday I crashed hard and ended up in the ER with "profound weakness." Today I was doing yard work like a crazy woman, like a woman posessed. Moved one of my compost bins, sstarted to pressure wash the back of the house but the Husband took over because I was crying because I'm ... possesed. I have no idea why I'm driven to do yard work. I mean DRIVEN to do yard work when I'm on a High. I just put down two big bags of beauty bark in the back-yard, moved the compst, spent an hour killing blackberries, raking ... Mike gets mad because I keep over doing it. Well, mad isn't the right word, concered I think more. I explained to him that I don't know how to not over do. I don't know when to stop. I don't know when to stop because it changes from day to day, hour to hour.
     
    Sorry, I'm rambling again. I'm the amazing motor mouth, chatter chatter chatter.
     
    It's like that credit card commercial, where the guy has dug himself into deep deep debt, and he finally says "somebody please help me."
     
    I haven't figured out why I don't do this in the house. Clean the inside of the house, empty drawers and cupbards and closets. I don't know why I don't turn this energy inside. I don't know why I don't use this energy to pain and refinish furniture or texture walls or retile my bathroom or my kitchen.

  13. Mediterranean Diet

    · vinesqueen · 08/16/2006 02:18

    Ok, I saw a new local Endocrinologist yesterday, mainly because I needed some local support, someone to locally help me interpret lab results and the like.
     
    I also wanted to see if he could help me come up with an action plan so I don't end up in the ER any more because I crash so Low.
     
    Well, he ordered yet more UFC tests because he didn't believe the other test results :eek: because they are too high, and I don't really "look Cushing's." Cushing's is a biomedical condition. No one says you don't have high bloodpressure because you don't "look like you have high-blood-pressure..." And no plan of action to keep me out of the ER either...
     
    ANYWAY...
     
    He decided that I need to lose weight (ya' think???:faint:) So, he wants me to do the Mediterranean Diet. I suppose that would be ok, but it seems to be very high in Carbs, which as a bandster, I have problems with on several levels, not the least being difficulty eating them :hungry:. But it calls for drinking wine, but I don't drink wine :clap2:, especially red wine, I just have never been able to develope the taste for it.
     
    But I thought I'd share, since it sure gave me a laugh. Ok, so yesterday it was more hysterical laughter, but laughter still...

  14. World Domination!

    · vinesqueen · 08/16/2006 00:55

    I'm High again
    I just mowed the front yard
    and weeded part of my rock garden
    and watered the rock garden
    and cleaned the rust off the 3 different types of hoes
    and cleaned the rust off the spade and the fork
    and cleaned the fern
    and mulched two flower beds
    and watered the lilacs...
    and two days ago a trip up from the basement needed a rest in-between
    all last week I was weak and tired, could hardly do anything but sleep
    I still don't feel "strong" like I will later in the week
    if only I didn't have theses lows, can you imagine how much I could get accomplished?
    World domination!

  15. A memorial weekend

    · vinesqueen · 08/14/2006 19:49

    Well, this weekend I spent with my mother-in-law, while she took care of some things for her best friend who recently died after a protracted illness. Every year, my MIL and her friend went to this charity high-tea out in Kelso, WA. The two charities support families in need, one is a family homless shelter and the other provides new school supplies to kids in need.
     
    The weather was lovely, but since we are having one of the dryest summers on record (the next dry one was in 1960) It's been a lovely summer, but man I miss the rain!
     
    Anyway, we went to the second sitting for the tea, which is the one that they always went too. I know it was hard for my MIL, especially since she brought several tea things to give to the Tea Lady.
     
    We had several things that she needed to do. The next day we were going to go to their church, but we didn't sleep well, so we didn't go. She'd neglected to tell me that that was part of the plan, so I wasn't prepaired. Pagans don't really attend church...my in-laws are Lutherens, but I've never been to a Lutherin service. Oh well. I didn't pack any "church" clothes...
     
    So, we slept in, and went to breakfast at this cute little plance, with ginormous portions. Since I'm unfilled I had heavenly french toast! ok, I had 1/2 piece of french toast and some baccon, but man, have I missed french toast :hungry:! We met the friend's son and his family for breakfast. It was pretty funny, I thought we were going to be eating with Church ladies, but my MIL headed straight for the table with the tough burly biker-looking dude sitting by himself. Massive tattoos on his biceps framed by his black tee-shirt, in the wife-beater style... :laser: Not the usual "type" of person my in-laws associate with! Nothing "proper" about him, but he was the nicest guy. I took pitty on their 11 year-old grandson. The poor kid had to try to entertain himself quietly with a spoon and paper-napkin. I gave him my PDA to play with. I just couldn't sit there and let that kid be miserable... I know how it was with my son... Ah yes, I made a friend right then!
     
    We spent a good chunk of the afternoon going to boxes and bags of the Friends things. Looking through the remains of a long life. The life of a stranger.

  16. calories in/out debate

    · vinesqueen · 08/11/2006 16:35

    I know that lots of people are convinced that weight loss is about calories in/out and I know that that holds true for the majority of people. But I have to wonder about us Cushies. I don't think that it is a matter that we have a really slow metabolism.
     
    But the thing is, it doesn't matter how much I eat or don't eat. The calorie in/out would hold true if I gained massive amounts of weight on 1200-1500, when I couldn't lose on 1200, 1000, 800 or less than 700 calories. (I did gain 10 pounds in a week at 1000 calories, but that was one week.) It is entiely possible that my weight gain/loss has been only water, which is fine on one level because it lessens my edema problems. But not fine for why I had WLS. If my metabolism was truely that slow, I wouldn't metabolize medications as fast as I do, and I would gain constantly.
     
    But as for low calories, I just don't see how other people can function on sub 700 long term. I will give you that it is entirely prorbable that I entered into a deep Low during the month I was too restricted. But I think the lowered calorie intake made the Low worse.

  17. AI part II

    · vinesqueen · 08/10/2006 01:51

    Well, I feel like I've been put through the wringer.
     
    For a couple of weeks I was on a heck of a High. Or at least it feels that way. Sunday I was raging around for no good reason, felt like a bear someone was poking with a sharp stick. I've learned that a crash soon follows these rages, but crap! Monday I couldn't sleep and got up really early on Tuesday but felt really tired in the afternoon. I took a nap, and new a crash was eminent.
     
    Oh man, but I sure wasn't expecting the crash I had. I rarely remember having any dreams when I nap, but yesterday was way out. New I was introuble in the dream. Got freezing cold, terrible drunk feeling with the spins and everything. I woke up and dry heaved for a while, terrible itching. But the worst was having the right side of my face... melt, along with slurring speach.
     
    I had my son call Chris, and my husband. Chris had my son drive me to the ER and to not wait for my husband to get home. So my boys took me, and I waited in the ER for almost an hour to get a bed, and I waited almost 2 hours before I was able to get something to help with the nausia and the seering headache and flank pain.
     
    They did a CT of my head, and it showed no problems. All in all I spent a almost 6 hours in the ER.
     
    I placed several calls to various doctos, but no one as called me back yet.
     
    I sure wish I knew what was "urgent" and what is just bad.
     
    So, I've had three of thse in the last while. Two trips to the ER in the last four weeks. This one was worse than the last one.
     
    I've been High for the last couple of weeks, and except for the bad parts, like the rage and anxiaty and general pissiness, I prefer the Highs to the Lows. I think being High for so long made the crash all that harder because I was hit bottom so hard.
  18. Oh! We all are bloody-well boozin! (chorus from my favorite Victorian Drinking song.)
     
    One of my weird personal observations is that when I'm in a High I also want alcholic beverages. I mean, I almost crave them.
     
    I'm not now, nor have I ever been an alcholic, but I'm certianly predisposed to being one. My Greatgrandfather was, my grandfather, my dad and 3 out of my 4 sibs are alcholics. Because I've always know of my family history, and the possiblilty of being predisposed, I've always been very careful with my alcohol use.
     
    When I'm on a High, alcohol has little if any effect one me that I can feel. No Buzz for me, no tipsy feeling no nothing. As an experimnet I'm gonna see if I can find some of those personal use alcohol tester that I've been told they sell at convinence stores. When I'm in a Low, I don't have any desire to drink.
     
    I just thought this was very interesting.
     
    Drinking Alcohol May Correct Stress-Hormone Malfunction http://pn.psychiatryonline.org/cgi/content/full/36/12/20-a
    A new study has linked an abnormal response in stress hormones to alcoholism and proposes that for a person with alcoholism, drinking alcohol may actually "correct" the abnormality.
     
    The reward of a euphoric response to alcohol that most people experience is known to be related to the release of stress hormones. A new study suggests that people who are alcoholic may actually drink alcohol for its apparent ability to help correct a dysfunctional stress response.
     
    The study reported two significant findings: First, some patients recovering from alcoholism, even after prolonged abstinence from alcohol, continue to have a significantly suppressed stress-response system. Secondly, their systems appear to be hypersensitive to serotonin. The study is described in the May issue of Alcoholism: Clinical and Experimental Research.
     
    According to the authors, some patients who are alcoholic respond differently from nonalcoholic patients to stressful situations that involve the brain’s serotonin system and may drink alcohol under stressful conditions in order to "correct" their brain’s response to the stress.
     
    Subjects recovering from alcoholism were given fenfluramine to cause an acute increase in serotonin activity. This was then suspected of causing increased activity in the subjects’ limbic-hypothalamic-pituitary-adrenal (LHPA) axis—the system of interconnected brain structures that becomes especially active in response to stress—leading to secretion of the stress hormone cortisol by the adrenal glands.
     
    "Our major finding," said researcher Robert M. Anthenelli, M.D., "was that alcoholics who had been abstinent for an average of more than four months had a twofold greater cortisol response compared with nonalcoholics following administration of fenfluramine." Anthenelli, the study’s lead author, is an associate professor of psychiatry at the University of Cincinnati College of Medicine and director of substance dependence programs at the Cincinnati Veterans Affairs Medical Center.
     
    He said the finding is surprising in that it contrasts with most other published reports indicating a blunted or unchanged stress response in patients who are alcoholic, with shorter periods of abstinence.
     
    "We also found that the stress-hormone response in recovering alcoholics did not return to baseline levels as quickly as it did in age- and race-matched nonalcoholic control subjects. In other words, it appears that some of our recovering alcoholics had difficulty turning off the fenfluramine-induced stress response."
     
    While the authors did not directly speculate on the implications of the findings, other researchers have. "It is reasonable to speculate," said Stephen Woods, M.D., professor of psychiatry and of neuroscience at the University of Cincinnati, "that there are physical consequences of this." Whether the change in the LHPA axis is the result of prior brain differences or is a consequence of former consumption of large amounts of alcohol isn’t yet known, Woods said in a press release issued by the National Institute on Alcoholism and Alcohol Abuse.
     
    "An interesting clue, however," Woods suggested, "is that the elevated cortisol response is reminiscent of what has been observed in individuals who have never before experienced alcohol, but who are considered at high risk for developing alcoholism. One possibility, therefore, is that the prolonged elevation of cortisol following fenfluramine is characteristic of certain alcoholism-prone individuals and can be observed either before they ever drink or after a prolonged period of abstinence."
     
    "We propose," said Anthenelli, "that this may represent a trait marker of alcoholism . . .that could distinguish subgroups of alcohol-dependent people or those who have a predisposition for alcoholism from people who do not."
     
    Woods thinks that the findings may suggest that the reason some people drink more alcohol and eventually become alcoholic "is that a ‘defect’ in their LHPA response to serotonin is ‘corrected’ by alcohol. If this were the case, then alcohol would have a greater degree of reward value for those individuals than for people who do not have the same ‘defect.’ "
     
    "Stress Hormone Dysregulation at Rest and After Serotonergic Stimulation Among Alcohol-Dependent Men With Extended Abstinence and Controls" can be accessed on the Web at www.alcoholism-cer.com by entering "Anthenelli" under "Author." {blacksquare}
     
     
    --------------------
    Oregon 5-day work up 4/24
    UFC 214 on 6/21
    UFC 299 on 7/21
    UFC 292 on 7/22
     
    Cyclical Cushing's
     
    If it walks like a platypus, talks like a platypus, looks like a platypus, it must duck because it has a duck bill and besides, platypus are too rare around these parts....
     
    UFCs crucial
    For Tyranny of the Jug
    Pee into the hat
  19. Nothing special planned for the weekend. I was going to spend some quality time with WoW, World of Warcraft, if everything co-operates. Hope to get a movie in on Sunday afternoon.
     
    I spent about and hour this afternoon trimming bushes and waging war against the blackberries. Oh the Blackberries! Nothing says "abandond property" like blackberries! Sure the English Ivy will take over almost as fast, but some how it looks genteel as opposed to abandonded and unloved. But I topped off the giant yardwaste bin (not composing because of the blackberries) and a medium sized garbage can (again, not composting because of the blackberries.)
     
    It's almost 3 am and I'm wide awake. I've been up since 7am and good grief. Kind of figures that the day I take a break from testing I'd be up all night. I don't care! I'm making a break from the Tyranny of the Jug!
     
    Still no word from Chris at OHSU, I had called thrusday morning and left a message, I had hoped that she would call, but no such luck. *sigh*
     
    I heard back from my niece tonight. I strongly suspect that she too has Cushing's. She saw her PCP, and he send her to an Endo requesting RUSH testing. She actually saw the Endo the next day. Doesn't look good, Her hump isn't humpy enough, she's not weak enough, her stria isn't red or wide enough, but he did order some blood tests and a UFC.
     
    My son came home bragging that he'd gotten to see a Pirate rock band at the local mall. Every Friday they have live music on the stage, as well as several other nights, and tonight they had a group called Captain Bogg & Salty Spud and his girlfriend BabyGirl (I"m working on a new nickname for her, this week I'm calling her BabyGirl) bought all their CDs and had a really great time. Apperently they group had a FisherPrice, My First Mosh Pit... When I ripped the CDs to my harddrive it came up as Children's genre, so there were lots of kids in the audience. So there you go.
     
    I'm detecting a theme to his latest gifts to me.. Pirate CD (but not pirated one ), pirate playing cards, pirate rubber ducky, and my very own tooba pirates... Well, I'll be well prepaired for International Talk Like a Pirate Day, Sept 19th. (I'll be having my 3rd anual Pirate party... on 9/16, since ya can hardly have a rip-roaring Pirate party on a Tuesday Depending on how I feel tomorrow I might see if I can get my husband to take me to the SeaFair Pirates landing. Yeah, like I can handle the crowds... LOL!
  20. Q: I'm just wondering if we know why we don't lose weight. Why we can't lose weight? As you know, I spent a month at less than 700 calories a day, an managed an impressive 1.5 pounds lost. Which I promply gained when I went to 1000 calories a day. Can someone point me to some links? (and also hopefully break it down so I can understand it when I'm in a brain fog.)
     
    Is it true that excersize increases cortisol levels or production?
     
    This is the information I got from my Cushing's board http://cushings.invisionzone.com/index.php?showtopic=17111&st=0&gopid=145400entry145400 (might need to register to view the thread.) LynneC is one of the long time Cushing's board member, and a great all-around resource.
     

  21. Holy meth-addict Batman!

    · vinesqueen · 08/01/2006 17:45

    I got my resutls from Chris yesterday, before I became a raving lunatic.
     
    7/21 299
    7/22 292
    7/23 171
    7/25 61.2
     
    So, I'm not surprised that I felt so horrible when I dropped. I had a drop of 230 in a matter of days. I have no doubt that I dropped further than that.
     
    I am still working out when I'm High. I thought I had figured this out perfectly, but as it turns out, I apperently get really 'roid ragy *just* after I peaked.
     
    Previously I've been testing just one day, when I felt I was at my highest, when I was at my most crazy pissed-off lunatic. If this last testing phase holds true, where I tested for several days starting when I thought I was entering my High, then I should be testing before I think I'm High, I should start testing when I'm swinging High.
     
    It might be that when you think you are swinging you are actually higher, and when you think you are high, you are dealing with the flood of cortisol in your system.
     
    Just a thought anyway. But I also have heard other cyclical cushies say that the thought they were low when they were high.
     
    I really think the only way to know when you are where is to test. If nothing else, it gives you a baseline so that you know that when you feel X, your numbers are probably within Y range.
     
    Now, as to being a lunatic yesterday. Holy meth-addict Batman!
     
    Yesterday morning I still felt really bad, nausious, back hurting like a mutha-fucker. I spent all weekend sucking down phenegrin and vicodin. Well, not so much the pain killers, just power through that pain, but then it got the point of am I nausious because of the pain, or am in in pain from the nausia? That didn't make any sense, how could one be in pain from the nausia, so I figured the pain was making things worse. Anyway. I felt like dog-pooh all weekend. Friday was really bad because I felt like I had my HIGH and Low both together. I felt so bad no WoW for me!
     
    I did manage some PvP in the battle grounds, I lost my Blood Guard rank with Palan, and I really need to work on getting my tier 1 Beastmaster kit. But I ran some lowbies through some dungeons to help them with their quests. Mike was amazed that I was able to one-shot just about everything in the Wailing Caverns. I really want to both work on my Beastmaster Kit, but I also want to drag Karada up so we can do instances together again, where we both will get benifit. :clap2:
     
    Ohh, nothing like a little ADD thrown in the mix! Okay, back to yesterday. ... I felt crappy all morning, then about noon I started to feel better, then by 1 or 2 in the afternoon I felt GREAT! I mean, really, really good. I had lots of energy, but by 3... I started feeling like I had almost too much energy, if that was possible. Like I'd had 2 or 3 Red Bulls one right after another.
     
    Time seemed to dialate, like I was moving faster than everything around me. I tried to type out something on my Cushing's board, to see if anyone had similar symptoms, but I couldn't type, my fingers were moving too fast, and it was just ... wrong. I had way more energy than I should have.
     
    I went for a super fast walk around the block, I was almost running, but power walking for sure. Then I started in on the yard work again. Then I made my son get the presure washer out and move it so I could pressure wash the front and side walk ways. I was completely out of control.
     
     
    I crashed out for a couple of hours, until about 8pm, and then was up for several more hours. I went to bed about 1:am, but I was still buzzing. I didnt' want to get up because Iwas enjoying snuggling with Mike. I missed him while I was sleeping outside.
  22. Wow, so much has changed since I originally started the thread "no help for the wicked." It was 3 months before I was banded, and I was really struggling with my asthma. I mean, really struggling. Death looked like a real possibility.
     
    I really thought that by now I would have lost if not all my excess weight, I would have lost a big whack of it. I was sure that I would be a size 16 by now, not still 22/24. But that is not in the cards for me. I still struggle with this.
     
    But I suppose I should have clued into the "sudden weight gain" since no one else seems to experience that particular "joy." I've since learned that it's one of the hallmarks of Cushing's, and I've had to come to terms with learning that my journy is not the typical journy.
     
    Someone on a recent thread was commenting on how pissed they were because someone told them that by having WLS they were not doing it "right" that they were not doing it the old fashioned way. That somehow having the band was cheating and so any loss woul be less valuable.
     
    I personally think that WLS is the easy way, because it makes it makes it possible for so many people to actually lose weight and keep it off for possibly the first time in their entire lives. I have absolutely no problem with this being the easy way, becaus I have no need for people to suffer. I see little value in adding suffering and grief to life. It's hard enough without looking for extra hardness to add.
  23. It seems like the only sports stories I hear about are the scandals involving professional athletes and steroids and/or performance enhancing drugs. It got me thinking. How can I personally relate these stories with my life?
     
    Imagine if you will, that I am a world famous athlete. I’m one of the world’s top baseball players. Never mind that in reality I’m recently 44, 5’4” with frizzy hair and I’m shaped like a baseball… Why, even my face is shaped like a baseball… Anyway, someone gets suspicious… my bat’s on fire, and I hit for the cycle almost every game! Hey battah-battah!
     
    My batting average gets better and better, until finally, the baseball commission finally has no option, they must test me for steroids and performance enhancing drugs. Bad news for me! The blood tests come back and my testosterone comes back “freakishly high” and I’m clearly on steroids… They are even starting to affect my life off-field, getting into fights…

  24. benign breast mass

    · vinesqueen · 07/27/2006 21:59

    well, the mass in my breast is benign. The whole process was so painful, and I ended up with tears streaming down my face as she mashed my breast in the machine.
     
    I don't know if there will be a bruse, but I'll be surprised if there isn't one.
  25. Okay, we all know that Dr. Bruce Banner got dosed with too much Gamma Radiation, which turns him into The Increadible Hulk.
     
    So...
     
    I'm thinking that it was his Pit that got espeically zapped. His ACTH has to be affected, since he turns green. (I'm not sure where the ACTH is produced, so I could be wrong.)
     
    "You wouldn't like me when I"m angry" pretty much sums me up when I'm High...
     
    So is he cyclical with *really* short cycles, or full blown Cushing's?
     
    I edited this because I got his name wrong! :eek: Good think I married a Geek-boy-husband because he was able to straighten me out!
     
    Also, someone pointed out to me that The Hulk is green not because of t he extra ACTH, but breen from nausia. Some folks have nausia with their High phase... And most people agree, the Hulk is probably definately cyclical...

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