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Friday's UFC, a personal best

I've been on a dewsy of a High since about Thursday, I've been testing back-to-back since Friday night. (ok, I didn't test from Midnight lastnight to 10:30 this morning because the lab I use was out of UFC jugs.)   Chris called me this afternoon, which I missed her first two calls. I was in the backyard sleeping under the maples. She called again this evening, and gave me Friday's results ....   Friday I hit 299. The Gods only know what I hit yesterday and today, when I feel like I was much Higher than Friday. I should have those results probably on Thusday... I don't even want to think about what happens on Thusday.   Anyway, Chris said they want me to come back down to OHSU on my next High cycle. So, that should be in two weeks, give or take.   I expect to crash in the next day or so, if my pattern holds true.
vinesqueen

vinesqueen

1
 

temper temper

So, I'm feeling really High, which doesn't help.   I woke up late, not that I have anything to do with my life, but I wanted to get up before it got hot. Husband refuses to sleep with me, so I'm generally pissed off about that. He doesn't want to sleep outside with me, and inside is ... well there is no way I can sleep in the house its so hot. He said there was no room. IT'S THE FREAKING BACK-YARD! HOW MUCH ROOM DOES HE THINK HE NEEDS????   So. I got up late. Took my two full UFC jugs from yesterday into the lab so I could have my blood drawn. They always want it fasting, so no coffee yet for me. Because it's a fasting-draw, it means the my morning is disrupted, because I dont' have my coffee. It's the ritual, more than the caffein, I think.   Get to the lab, they draw my blood. I've been doing back-to-back UFCs since Friday, but they ran out of the containers because I'm pee-ing my brains out. (Is it normal to pee 5000 ccs a day? I think not.) Anyway, this morning they got a shipment of supplies, and the containers they got for the UFCs are 3 counces. THREE OUNCE BOTTLES FOR ME! Ok, that was actually funny.   Did I mention that I got a phone call about 5 minutes after I got up? It was from the breast cancer center. They found a large mass in my right breast.   Obviously, 3-oz bottles are not going to cut it for the pee machine I've turned into, so the other lab-tech drives over to their main office to get the right ones for me. While she's gone, I decide I'll head over to the grocery store to get a latte. I bought some small grocery items, while i was there, some specialty coffee stuff. I got some cash back so could go to the movies to beat the heat.   I go back and get my correct UFC containers, and it hits me that the total at the grocery store was a little excessive, so I double checked my recipt. They over charged me for the maple sugar, by $4! So, I drive back to the grocery store and get that straightened out. I leave the store, and the sugar on the counter. Then I realize I've lost the $20 bucks I got earlier, and the guy comes out with my sugar.   So, by this time, I'm cranky, my head is splitting, my kidneys hurt, and I've just realized I've lost a $20 bill. Oh, and I have to pee. I go to call my husband, wanting him to say something sweet to me, and disover he's forgotten to pay the cell phone bill. In my frustration, I had a temper tantrum, and threw the phone onto the passenger seat, which promptly bounced against the window.... That was the best part of the morning. That I'd rolled up the window.   I didn't realize that my son, who's been driving my car, left me on empty. I don't think I have enough to make it to the gas station. So, he's not going to drive my car again, not for a long while. Oh, and the last time he drove it, he and his girlfriend destroyed my MP3 adapter so I can listen to it through the car stereo.   All I wantted to do when I got home was take a baseball bat to something. Anything. My husband's motorcycle. The broken one he bought for me and refuses to fix. Smash all the mirrors in the house because I can't stant the sight of me anymore. Break every dish in the house, throw all his clothes out on the lawn and set them on fire, take an ax to the shed.
vinesqueen

vinesqueen

2
 

Cushing's in the News

My Cushing's was found because I refused to give up finding an answer about why I couldn't lose weight. Weight issues are one of the more obvious symptoms of Cushing's.   Anyway, right now I'm on a cortisol High, and I'm testing. Keep your fingers crossed for me to get really high numbrs. One more high number and I'll be on my way for my Pit surgery!   http://www.49abcnews.com/news/2006/j...hings_disease/ You will need quicktime7 to play the video, but you are offered a download.   I continue to believe that some of my beloved Turtles are also Cushing's. Especially the ones who've mentioned that they have new stretch marks, etc. Because almost all Cushies are fat, if not MO, I suspect that there will be a higher proportion of Cushies who've had "failed" WLS. That their choice, no matter which WLS they chose fails them because food is not our issue.   I had a therapist who specialized in eating disorders tell me that I didn't have any eating disorder, and that baffled him, because he'd never run accross someone who was MO who *didn't* have some sort of eating disorder. :guess Turns out I have a BRAIN disorder :mad:   I told my DH yesterday that there is a significant portion of the population that need a second Pit surgery because they often don't find a cure on the first go. Then he started singing to "my boyfriend's back" substituing 'the bitch" for "my boyfriend" in that silly way he has :clap2:. He makes jokes when he's uncomfortable, but his song was sure appopriate! I really was a bitch yesterday, pissed off at the whole world.   We sat outside lastnigh for more than an hour, just enjoying not being hot. He sprayed the swing down with the pressure washer, playing more than anything, but it sure was hot. While we sat out there, I explained to him why I get like I get when I'm on a High. He knows some of it, but he didn't realize all of it.   You see, when I get on a High, I for the most part, feel really good. Except for the being a major bitch part that is, wanting to throw dishes and tantrums. But I basically feel physically good right now, except for the chronic headache. I have ENERGY, which is something I don't have when I'm on a Low. When I'm High, I have the drive to tackle all the big projects that I want done, like painting and gardening and pressure washing and basically taking over the world. And because I only feel like this for a few days or a week at a time, I feel that I *HAVE* to get busy and get things done because in the past I didn't know how long I will be able to feel this way. And I get mad at Mike and Spud because they don't share my sense of urgency.   I suspect because I have figured out my cycle, or think I have anyway, I might be able to mitigate this sense of urgency. Until I have my surgery and am cured anyway! I'm hoping that this will be so soon. But until then, I feel very confident that I'll be able to tell the Guys that I'll be feeling good again in 10 days, and that they'd better be ready for the next project. :biggrin1: I'll be able to give them a schedule so they can prepair for the next round. So they can start getting ready *now* instead of having it sprung on them with no warning :bandit
vinesqueen

vinesqueen

2
 

swinging High

I'm now higher than not, but not yet high enugh to do more testing.   It's sort of facinating, in a Dr. Spock sort of way, to watch every mood, every physical symptom, charting it to determine where I am. Sometimes I wonder if people are really supposed to be so in-touch with our bodies, and othertimes I wonder why everyone isn't so in-touch.   The last two weeks have been physically difficult. I've been in a low, but thankfully not as low as I was in June. No adreanal failure, knock on wood, but I was very low nonetheless. The last couple of days I've had terrible kidney pain, an 8.5 or 9 on the 10 painscale. I suppose I should have called Dr. L, but I didn't. I'm so tired of doctor visits, I want a normal life. But I have no idea what that is like. I remember when I was in my 20's that I had so much energy, so much ... life. I can only hope that the headaches stop once I have the pit surgery.   This morning when I got up my face was very puffy. My eyes looked like I have a bad case of poison oak, which in a very weird and twisted way is a good thing because it lets me know that I'm going to be a screaming maniac soon. The bruise from my last accupuncture treatment still hasn't healed, but then again, I am not really expecting it to since it's only been a week.   I have the will to do things, which is another sign that I'm heading high. Yay! But unfortuantely, I don't have the stamina. The lows leave me so weak. I'ts like I have Addison's on top of the Cushings, which is all part of the magic of Cyclical Cushings. I either have too much or not enough. Overdose of cortisol or withdrawl from it, with now a week or so in the middle where I feel somewhat normal.   I've done a few load of laundry today, which is great for several reasons, the least of which is that I need clean panties! The key is to not over do, which is such a delicate balance. When I feel good I want to do all the things that I don't have the energy to even think about when I'm low.   I suspect I have a CSF leak, which considering I haven't had the surgery is a bad thing. Well, a CSF leak is never a good thing, ever. Last month while we wer in Seaside I had the leaky feeling, and again on Sunday. It just isn't normal to have your nose suddenly leak when you bend over. It usually happens when my headaces are at their worst, and then I'll do something like bend over to pick something up off the floor, or I'll sweep up something into a dustpan... and then I'll feel something tear loose and my nose will run. It doesn't taste like snot, sort of salty and bitter. Again, it's weird to be so in-touch with my body that I know when the flavor of my snot is wrong.   So, the wather is supposed to be getting hot, just in time for me to be heat intolerant. Funny how that works. Oh well, it will all to my stress.
vinesqueen

vinesqueen

3
 

UFC of 214

Dr. L called last week to tell me that I'd tested really high I went through a whole range of emotions.   214 from 6/21. He wanted to know what was going on with me that day, but I was on vacation in Seaside OR, trying to forget that I had any problems at all. Funny how things come and drag you away from the lovely river in Egypt…   Part of me was very excited, part of me was very distressed. Yes, I know the MRI showed a tumor. Yes I know part of the beauty of the River is that it is a defense mechanism.   So, with the number I am closer to some sort of resolution.   I call my husband and cried after I got off the phone with Dr. L. This makes it more real, it means that it isn't a delusion, that it isn't a fabrication. I still don't know how I feel. It is so hard, for so many reasons. I mean, on the one hand we desperately want answers, answers to why we have all these crazy symptoms. But unfortunately, the answers are as frightening as they come.   I don't want this, but I do. It's terrible, but wonderful sort of. It is validation. It is hope, but a hope that brings with it new fear. That number brings out new questions, new unknowns that I have to deal with. I know that other people have tread the road that lies ahead of me, and I am grateful that they are willing to share what they have seen and felt, willing to share their experiences both good and bad.   This number represents validation. Validation that this is real.   I too think that the testing is nearing an end. I feel that this is starting to speed-up, that it is becoming faster and faster. I know that my cycle is speeding up, and getting stronger at the same time. Like it's some sort of demented oscilloscope. There are some days where I feel like I'm going through a full cycle in a day. But I want this to stop.   I want it to stop, but I am afraid that once this get taken care of, that I'll be fixed in a place where I feel terrible. I am starting to recognize where I am, by how I feel. I have good and bad days, of course, but I'm afraid that I'll get "fixed" in a low state. I suppose we all have this same fear.   Damn, I'm crying at a stupid twilight zone episode. The low has started. I only hope that I don't have the same depths of lows as June. I ended up with my adrenals shutting. Ending up in the ER because it scared my son and he called 911.
vinesqueen

vinesqueen

1
 

facing the facts, facing reality

A few weeks ago I got an e-mail from someone who's been courting me for a job. The e-mail wasn't good, there was a re-org and the postition was elimitated. To put it mildly, I was devistated.   Devistated not only for not getting the job, but it ws a much deeper emotion than was warrented over not getting a job.   I'd been putting a lot of energy into this job hunt. And i realized that what I was doing was trying to run away from the Cushing's. I was trying to do what I do so often, distract...   If I could distract myself with this job, and all the responsibilities that would come with it, then maybe I could convince myself that this wasn't really going on. That I'm fat because... because I eat too much.   Yeah, that's it, I eat way too much, so of course I am fat. I mean, I fill my plate when I eat, and sometimes I even go back for seconds. Never mind that my dinner plates are saucers instead of plates. A bread and butter plate is filled to the brim with dinner is a large meal. Yup, I eat way too much off those plates. I use regular dinner plates for Charger plates, and well, a real Charger is a wonder in it's hugeness.   I have road rage because ... the drivers here are so stupid. It's all their fault. there is no room for error, you didn't plan to merge a mile ago, so it's all your fault I'm screaming at you. Honking my horn at you because you are too stupid to be on the roads. Don't even thing you are going to merge in front of me, and there is no way in hell I'm going to let you pull out of the parking lot. Wait your turn. Oh sure, if I got more than 4 hours of sleep at night, maybe I wouldn't be so furious over everything.   Sure, that's it. It's because I can't sleep. except for when I can't wake up. Or I'm too tired to do anything. And then, of couse, ti doesn't matter how badly you drive, because I don't care. Sure, cut me off, I know you didn't mean to, sometimes you can't help it. Here, I know that spot is tough to get out of, let me wave you ahead of me. That's okay, you go first, you are probably having a tough day.   I thought if I got that job, I could tell myself that it was manageable. That the tumor wasn't that big of a deal. Oh, wait. Tumor. I forgot. Okay, okay, I didn't really forget. I just wanted to forget. And isn't that the same thing? Isn't it just as good? No? Damn.   So, not getting that job really made me step back and take a hard look at my life. No more trying to dstract myself. No more, if I ignore it, it has to go away. I mean, I've always gotten better, I always feel better, I always get in a better mood. Right? Don't I? Well yes, sort of. Except now the cycles are getting shorter and shorter. It used to be that I would go a long time until I finally snapped. Until I started screaming at random people, or worse yet, the people I love. What used to take months to cycle is now taking weeks. I am afraid that it will get to the point where I cycle hard within a week. Wheee! Won't that be fun?
vinesqueen

vinesqueen

2
 

whirl-wind

Well, last week I had my week's work-up at OHSU.   My PIC line closed off, and the tape they used ate the skin off my arm, so I've been fighting an infection there. It really chewed up my arm, but it finally stopped hurting.   I got my famous jugs yesterday, so I'll do the first UFC tomorrow. I'm so wound up tonight, that I'm probably high.... Heh, any where else, in any other context, that would sound bad.   So, I didn't perform at the bellydance party on Friday, like I was supposed to. There will be other solos so I'm not really upset. I just couldn't face the questioning looks with the way my arms ended up being chewed up over the week. It would have just been too hard dealing with the questioning looks. Too hard.   Sunday afternoon I got a call from my sister. Our mother had been having some serious health issues, and the doctor called her on a Sunday, and told her that's she's got pancreatic cancer, it's verified. So now I have to deal with that, and with my rotten brothers.   Sunday night my Spudboy started throwing up with diarea, so I spent all night in the ER with him while they pumped him full of IV bags, pain medications and anti-nausia drugs. I think I got about 15 minutes snooze time in the ER.   Monday, after we got Spudboy home, and socked away in my bed, I think i got about 90 minutes of sleep, I was too wound up. I had a job interview at 3:00 and had to find and print my resume. Had to get the printer out, the good paper, and all that stuff. Road constrction in addition to not being sure where I was actually going for my interview added to the stress, but I arrived in plenty of time. I WOWed him. It was only an informal interview, to see if either one of us wanted to set up the full and formal interview loop. A full loop is an 8 hour loop, and is quite the endurance test. Anyway, I WOWed the guy! He's off for a 10 day inspection of one of the facilities in India, but he wants me to think about where in the organization I think I would fit best, what I would like to do most within the organization, where I want to focus.   Yesterday I had a partial unfill. I "only" had 1.5 cc in my band, but it was too much. I was getting tighter and tighter, and we decided that I should have .25 removed. I have had every meal without pain or PBs or slimes. Heaven! I'm hungry, and I know I'm eating more than I should. Funny, only a Banster would think that an entire chicken breast was too much food? I'm not tracking my meals, which is added stress I don't need right now. NWWLS has a new surgeon who's joined their practice, and he's an experienced neuro-endo-surgeon who's apperently one of the leading docs in the area, both subject and geography. He quickly outlined what the surgery would be in I had to have the adreanals done.   So, tomorrow I get my test resutls from Dr. L. I am excited and scared at the same time. I don't know what time he's going to call me. And I'm sitting here, wound up like a top.
vinesqueen

vinesqueen

1
 

not reading threads...

I'm avoiding threads where people talk about their weight loss, no weight loss challenges for me, and I'm even avoiding the threads where people talk about their first year. Just too painful, and I find I cannot face their successes that so thouroghly elude me. I feel like a heel for not congratulating them, for not cheering their successes, but I just can't face it. It's like the other day when I went shopping, and wondered into the Nordstrom Rack. To say that I was depressed because I still wear the same clothes I did before I was banded is like saying the Oakland Firestorm was a small brush fire. I was absolutely devistated knowing that eing a good little bandster is so futile, so pointless. I'm never going to lose weight, and I'll be fat forever.
vinesqueen

vinesqueen

1
 

bellydancing last night

Last night was my Wednesday night bellydancing class. It was my second class with this group, and the intermediate class is also the solo class. So I thought I'd be doing a solo next week, but as it turns out, we didn't have a soloist this week, and the instructor wanted to know if I was ready to go.   :girl_hug:   So, I haven't got anything prepaired, all my music is still packed up, and well, I told her to pick a slow veil piece. So there I am, in front of every one and the new music starts, music that I've never heard before, and I dance. It was such a beautiful piece, so sensual and flowing.   When the instructor announced that I'd be the soloist that night, I was greeted with some curiosity, because here I am, my second night, being the featured performer. I started with my back to the audience and started with beautiful arms and the slowly unwound myself from the veil. It was a 5 minute solo, and I rocked their worlds.   At the end of the dance, the soloist sits in front of the troupe, and they critique the dance and dancer. Last week, there were two soloists, and this week just me. The combined critique time from lastweek took about as long as my single critique. I knocked their socks off! One woman asked how long I'd been dancing, and I said, 'I've been taking lessons off and on since I was 18, and now I'm old." At which point they all started laughing.   After the class one of the drummers made a point of telling me how much he liked my dance, and wanted to know if I understood the effect it had, if I had done it on purpose. The instructor laughed, and said "of course she did, she's an experienced dancer!"   It was such a great night last night. Just great. I still feel rather unsure in the regular class, but that comes with being new to the group. Every group does things differently, and I just have to get used to the way the group does things. I sure need work on my zill work!:faint:   The instructor really wants me to dance at the hafla next week. Its an "alternative hafla" where it was described as a any music, any costume with a bellydance flair dancing style. It doesn't have to be strictly bellydancing, and I think it will be a while lot of fun. I'm thinking one of the pieces from Southern Culture, new bra, gold belt and jeans. I think that would be a whole lot of fun! I think a shimmy/fast piece would be nock-out! Espeically since I am a fat gurl. :kiss2:
vinesqueen

vinesqueen

1
 

how much worse?

The last couple of weeks have been rough, and they are getting worse for me. I feel like I'm on a high steroid taper for asthma, but instead of tapering, it's getting worse, and I'm not talking any steroids.   I also look like I'm on steroids. And it's getting worse. When I shampooed my hair yesterday, I had enough leftover hair to make a mouse. I've always had really super thick hair, but now its falling out fast. I'm freaked out, which doesn't help my stress levels.   But probably the most disturbing thing is that I'm turning into a screaming harridan. I am so close to bitting anyone's head off for no good reason other than they looked at me funny. I'm afraid to go out into public for fear that I'm going to really hit someone.   I feel like I've hit critial mass, but things are getting worse.   I've tried chamomile tea, bio-feed back, walking, but nothing is helping. I'm pissed off at the world and ready to pick a fist-fight over a parking space.   This is NOT me! I'm normally so laid back that I'm practially asleep. My husband was 30 minutes late lastnight and I was ready to rip him a new one.
vinesqueen

vinesqueen

2
 

week's activities for week ending 4/1/06

Well, It's sure been a wild week for me.   I got all moved out of my apartment at Idaho State, and moved back with my husband and son. I've sure missed them. My MIL drove back with me, which is a good thing because I'm doing that "completely blind in the dark" thing. Hard to drive 14 hours, but we did it.   I still have half a dozen bins to unpack, and re-integrate back into my family. I have to go through things and repack things that I don't need. I'll be saving them if I decided to go back to ISU, after everything is taken care of.   Still haven't figured out what my husband did with my main pencil pod with my drawing pencils, nor my main sketch book, but I have a back up set of pencils and sketchbook, even if the pencils are not in a nice contained pod.   One of the first things I did was find out if the local parks departments was offering bellydance. Joy of Joy! They are, and they are offering it at the new facility they built by my house. So I have bellydancing in walking distance! Today my husband took me down to a local Egyptian shop and I bought my first professional dance bra, I'm so excited! I got a gold beaded one, in the Turkish style. http://www.pyramidimports.com/bellydancing/bdbs1004.htm is a pix of the bra I got, but I sure don't have her body! :girl_hug: I was amazed that they had a bra to fit me, but they did, and in stock! I'm so excited. I already have a burgundy and gold belled dance belt, so I didn't buy this one.   I spent the morning clearout out our pantry, getting rid of almost all the grains and open pasta and bread mix types of thing. Some of the packages have been in there for ... gosh, 3 years, and some how, moths got into the flour products. So everything went into my neglected compost/worm bins. I was happy to see I still have some worms hanging out, neglected as they were.   This week I got my date to go to OHSU for a complete test pass.   Wow, what a week.
vinesqueen

vinesqueen

1
 

a dream.

Lastnight I had some very strong dreams, some pleasant, some not, but the one that is sticking with me, (besides the part about being feed shots of Senior Frog's green tequilla) was one of love and self acceptance.   The scene was after a huge flood, the waters had receded and the clean-up had begun. A very large woman was being interviewed by a national morning talk-show, like Goodmorning or Today (I don't watch these types of shows, but you know the type). She was about 350 pounds, and a professional belly dancer. She finished her interview, than ran out infront of the celibration parade and started dancing. She wasn't wearing typical belly dancing costuming, but it was still very pretty. She started dancing, and suddenly she opened her costume and "gave birth" to two other large dancers, who were strikingly beautiful, even though they both weighed about 300 pounds. They were also dressed in skimpy costumes, but they didn't care what anyone thought, they just danced their hearts out, danced to show their joy and happiness that the flood was over and reconstruction was to begin.     This was so amazing for me. I woke up with a sense of renewed determination. Here were these fat dancers who were out there for everyone to see, they didn't care what anyone thought, they just were out dancing their joy that the disaster was over, and time to rebuild.   I have been so stressed lately, feeling like I'm treading water and not making any headway in my journey. It's hard to face the scale when I gain weight on 1000 calories, but I'm not giving up.   I'm dancing like no one is watching, whirling my way through the debre of my life. I'm a bull terrier, once I latch onto something I don't let go, even when common sense says to move on. But I'm not giving up. I'm not letting go.   Never give up, Never surrender.
vinesqueen

vinesqueen

1
 

home again, home again, jiggity jig

Well, I'm all home. We got almost everything in the truck and my car except for my spinning wheel and 4 totes of stuff. My M-I-L drove back with me and we had a very nice time together. I've never really spent much time with her, so this was a chance to bond.   It took what felt like forever to get everything packed and cleaned, but it only took a day. I left the apartment like I like to move into one, with a few hangers, a shower curtian, soap and TP. Once you have to pass Navy housing inspections, well you know how to leave an apartment!   It snowed about 3 inches of wonderful wet big flaked snow Saturday night while we were packing up the truck. We'd gone to dinner in our t-shirts because the night was so relatively warm--high 50's. That's warm when the weather has been for months in the teens as a daytime high... By the time we were done, a big storm had blown in, and I do mean blow! The temp had dropped about 25-30 degrees in an hour, and was snowing hard!   By the time we got up the next morning, late because the motel lost power, all the roads were bare and wet, so we didn't have to worry about that, but it was C-O-L-D with that wind blowing. But DH got off and only had to stop the truck about 8 times to re-secure the load. It was blowing so hard that he almost lost one bin--it was litterally hanging off the end of the truck by a bungie cord! The cheze lounge was almost a lost cause too, but he was able to get it home safe and sound!   It took us about 14 hours to get home. That is a long-ass trip when you are crammed into a vihicle with a big chuck of your worldy possessions... And your MIL whom you hardly know. I did most of the driving, and had to stop when it got dark. I can no longer see in the dark. This started a couple of weeks ago, I can't read road signs until they are 2 seconds close. Not a good thing. So Mary Lynn took over and drove the last 4 hours home.   Heh, I was Miss Cranky-pants when we got home, so I took my meds and went to bed.   So, now comes the long process of unpacking and re-integrating myself and my junk back into my family. I already have a few rules that will change, like "thou shalt put the new roll of TP onto the spinner" and "thou shalt hang up your jackets" and "thou shalt not cover the antique furniture with your motorcycle parts and gear" to implement.   I'm going to take a break from unpacking to drive down to the lab and pick up my lab results.   I want to thank all of you for your love and support. It really means so much to me knowing that you are here for me, weaving a mesh of love and hope around me, prayers and white lights and positive energy combining to create a cocoon of kindness to sustain me for my fight.   Thank you, most sincerely and honestly
vinesqueen

vinesqueen

1
 

strength

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.
vinesqueen

vinesqueen

1
 

cortisol--cushings ramblings

... 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.
vinesqueen

vinesqueen

1
 

not patient, not happy

I found out today that it will be a week or two before I get my results from the first round of Cushing's testing. I can't help but pitch a big hissy fit at the thought of waiting two whole weeks for my test results. Dr. E will be out of town until next Monday, and I'll be back in Idaho by then. It just feels so far away, not only in time but space as well.   I see a new PCP tomorrow, my doc has moved to Everette, and that is just too far to go. I've been with her about 10 years, but I was thinking it was time to move on to a different doctor, since she wasn't really taking me seriously anymore. I mean, I had sleep apenea and serous sleep problems and I basically had to twist her arm to get it taken care of. She wanted to blame most of my issues on "needs therapy" as opposed to really wanting to find the cause.   I am just feeling so sorry for myself lately. Monday I ended up in the ER with another bout of celulitus. And my headache has gotten worse. Probably from all the stress from the Cushing's and decideing to quit school for now.   Pain makes things worse. It just does.   I feel anxious and stressed. I'm out of the lexapro, so I guess I need to get that refilled. Duh.   I miss my pilaties ball. How funny is that?   I started to use a new drawing book, "drawing on the Right side of the brain." it's pretty interesting. A very different way of looking at things, much more an adult program than the Mark Kistler books.
vinesqueen

vinesqueen

1
 

1 year bandivarsary

HI Campers! (Hi Crystal!)   Well, today is my one year bandivarsary. Not a single expectation I had before my banding has materialzied at least when it comes to weight or size, but perhaps the evaporation of my asthma symptoms (yay me!) makes up in some small measure for not losing weight. (that whole not-dead thing goes a long way I think)   I have lost a net of 30 pounds since being banded. I've lost 15 pounds since April 2005, which is hardly impressive.   This last year has been quite a ride for me. Right now I'm not even bothering to try to lose weight, I'm just concentrating on maintaining. And I'm doing a very good job of that. Someone on another board told me that they were disapointed that I've given up, that I wasn't even trying, so of course I would fail. But that's just it, I haven't given up and I haven't failed.   I don't think the band failed me either. Or maybe I do. I dunno. I know that I was very angry that I wasn't able to lose weight. I was well on my way for a while to developing my first eating disorder -- this summer and fall I was completely obsessed with counting everysingle calorie trying to lose weight. (tooth paste does not have any significiant calories, BTW) I spent a month at 700 +/- 100 (okay, mostly - ) because I couldn't lose weight at 1000 or 1200 or higher. I lost 1.5 pounds that month I was too tight.   I thought I had developed a leak, but it was just a case of an interventional radiologist who didn't have enough experinece letting out more fill than he was putting in...   It's hard watching everyone pass me by. It's hard to watch folks who started out with similar stats to me loose 10 sizes to my one size lost. It's hard to watch them lose so much more in pounds that I feel like I ever will. But at least I've recorded every one of my NSVs that I've ever noticed, which does help. After all, when I'm invited to go on Oprah when i finally do get things figured out, I'll be able to share more than pounds lost, I'll be able to share the life I've gained.   So, since I badger everyone at their bandivarsaries for their favorite NSVs, here are my favorite ones right now.   My top ten NSVs in no particular order. I didn't die from resperatory failure. Probably my biggest NSV, that whole not-death thing. Probably my favorite one too.
I have wiggle room when I fly, and I don't need an extender anymore either. (is that one or two?)
I've run for the bus without even thinking about it
I've been able to chase my Spudboy down the stairs and out into the street before having to stop becaue I was laughing so hard
I've started bellydancing again, and I'm a professional bellydancer too now.
I no longer have a "breathy" quality to my voice, but I'm told it's strong and clear now. (no more asthma!)
I am no longer The Great Crystal Dam in the bathtub
I can cross my legs. HOLY SH*T! I can cross my legs!
donuts no longer have any appeal
I have realized that I will never go hungry again. (it's a wolves thing)
vinesqueen

vinesqueen

2
 

Saw the Endo today

Well, today I saw the Endo, but it didn't go quite how I would have liked. Becaue I don't have the strechmarks, and because I work out I don't have the thin arms and legs, he doesn't think I have cushings, but he ordered the 24 hour urine test and three other tests. (my husband has my PDA with that information). I do know they are testing my testosterone because of the increased body hair, the increased facial hair (6 laser hair removal treatments and it is all growing back) and the male patterned baldnes, he thinks I might have something wrong, like a masculinizing tumor, but probably not cushings.   He wasn't interested in my sudden and unexplained weight gains, my fatigue, or my inability to lose weight. I think the man weighs 150 soaking wet. He's going to send me to a doctor that specializes in metabolic issues, although she mostly sees professional atheletes. He kept refering to me being obese (no kidding) and thinks that is why I'm having all the problems. He thinks I should work harder at losing weight. (hello! I had WLS for crying out loud, I work out, and I've managed to lose 15 pounds net since April.   I'm not terribly optimistic, but he didn't dismiss me altogether either.   He did tell me to stop taking the thyroid medication. He looked at my test results from Jan and couldn't believe the other doctor put me on thyroid medication.   This doesn't mean that I don't have Cushing's, it just means that I won't know until after I get the test results back from the lab, and until I finish peeing in a bottle for 24 hours. Oh joy that one...   I just sort of thought that after reading all that I've been able to read about Cushing's that some of the major symptoms that I have would have been looked at, and not brushed aside.   He wasn't interested in my journals, my before and now pix to see the difference and I was disapointed at that. The Cushings's board said to bring all that stuff, and he didn't even want to see any of it.
vinesqueen

vinesqueen

1
 

More Cushing's ramblings

Friday I meet with an Endo, finally. I will be going to Seattle this week, and I have the appointment with my husband's Endo. (Husband is diabetic, and this is his doc)   I tried to make an appointment with the Endocrine Clinic at the UW, but they wouldn't even talk to me without a referral from another Endo and a wad of test results. My Aunt wanted me to go there right off, but they wouldn't even talk to me.   I'm sitting here in near tears because I'm so jumbled up I don't even know what my feeling are, but none of them are happy and light. My husband doesn't totally understand why I'm in a panic, because he comes from a medical family. He and his sisters feel that since I haven't been officially diagnosed, then there is no point in worrying about anything. Since no tests have been run, what's the problem?   I know that part of my grief comes from my past history with doctors not taking me seriously, until something really serious has happened. I had kidney stones, and they sent me home because I "just had a back ache" When I brought in the stones they at least had the good grace to be shocked. And that is just one of many examples of doctors not believing there was something actually wrong. When I had a collapsed lung, the pulminologist told me my only problem was that I was fat. I had an oxygen saturation on room air of 82, but because I was fat, not because my lung was stuck to itself. Like I said, doctors don’t’ take fat women seriously, that or they just don’t take me seriously.   I’m afraid that this new doctor will just see a fat woman and just tell me to lose weight. It’s not like I haven’t tried to lose weight, I mean crap, I had the Lap Band put in last year, and since the end of March, I’ve managed to lose 15 pounds net. Yes, I am very, very glad I was banded, but it’s been hard watching people lose 100 pounds who started with a similar BMI. I spent a month at about 700 calories and managed to lose 1.5 pounds in a month. Of course, when I went back to 1000 calories, I gained 10 pounds in a week. I’ve managed to lose 5 of those pounds.   I’m scared that they won’t find anything wrong with me, that I’m just another head case. I’m afraid that once again I’ll be told to tough it out.
vinesqueen

vinesqueen

2
 

No help for the wicked (2-2-5)

No help for us. We are fat, we are gluttons, we are weak and undeserving of help, sympathy, or adequate medical care. Like Orson Wells said, “Gluttony is not a secret vice.”   Do I believe that? Some days I do in fact believe it, when I’m down, and lately more because of how ill I have been. Mostly it is a load of hog wash. Fat does not equal ugly.   There has long been a weird relationship with food, the body and the Christian church. And of course, we all know the impact that both Protestant and Catholic sects have had on Western Civilization…   Some of the Christian based weight-loss schemes are screaming “fat people don’t go to heaven,” and “use our program based on Leviticus and you will loose weight and be closer to God!” Sorry, I’ve read Leviticus, and I am NOT eating bugs…. (I call them schemes because I think we all here have come to the understanding that “diets” are just schemes…) If you had better self-control, more self-esteem, more will-power, were a better person, loved God more…. You would lose weight and be a better person.   There is no understanding for the overweight from most doctors. Before my husband had his band installed, the cardiologist said “Have you just tried cutting out sweets?” Now, on the face of it, this is good advice, advice we could all use. However, this showed a complete lack of understanding on the part of the doctor. You see, before my husband had his band installed, he weighted 596 pounds with a BMI in the high 80’s. Cutting out sweets would have certainly helped, it wouldn’t have stopped my husband from eating two or three fast-food meals at one sitting, or any of the other overeating behavior some of us know intimately, and other behaviors we are only starting to understand in ourselves and others.   I am currently having difficulty with my asthma: hospitalizations, steroids, greatly reduced lung function, other things as well. What am I told? Well, just lose some weight, we aren’t going to help with this, we are just going to pass judgment on you. Sudden and unexplained weight gain? Well, just don’t eat as much… (never mind that I gained 10 pounds overnight with severe edema…). I have to suspect that part of Delarla’s current adventure with gauze might have been caught earlier if she was thin.   I was told by my doctor that I just need to take up running. Yes that’s right, take up running. Can you imagine a woman with a BMI in the high 40’s running? (Please see the thread about giving one’s self black eyes…)   Being fat or overweight or big boned, or under tall, or metabolically efficient or famine resistant doesn’t make us failures, bad people or jerks. We might be over sexed (skin is the largest sex organ…), but we are not failures, or bad people or jerks. If we are failures or bad people or jerks, it is independent of our weight or size.
vinesqueen

vinesqueen

1
 

Flash of insight, Turtle Style

Today I had a bolt of insight. My Cushing's makes it close to impossible for me to lose weight. The band isn't going to help me lose weight. Cutting my calories and increasing my excersize and activies isn't going to help me lose weight. Until I get this thing straightened out with the celulitus and my skin graph, all work on the Cushing's has to go on hold. Boo-hoo for me.   No matter how I try, I cannot make the change in my Firefox browser so it doesn't show signatures, so I have to look at everyone's signatures. All the Turtles have to look at everyone's signatures.   Now, if you are not a Turtle, you cannot understand what this does to us. You cannot understand what it is like when we see your signatures and you have lost twice as much weight, in a third of the time. It is so increadibly discouraging when we see that you have lost 60 pounds to our 30 pounds.   We Turtles understand all too well that you want to celibrate your success. We in fact, celibrate them with you. But watching your tickers makes us feel like we did when we were kids, when we were the last ones picked for sports teams, when we never were asked out on dates, when we were outsiders.   This is just something that hit me today. This is one of the reasons Turtles get discouraged and leave.
vinesqueen

vinesqueen

1
 

Your changing body

I wrote this in response to this thread. http://lapbandtalk.com/showthread.php?t=14862 Kellie had written about being dissatisfied and bored after losing more than 60 pounds. She wants more, but isn't sure what is going on because she's changing so rapidly. ...   Romance is not just for the beginnning. Romance is for sustaining the relationship.   Okay, I can't talk about losing weight, and the changes it brings, but I think I can speak to the base issue.   Everyone gets bored occasionally, even I do. But the key is find something passionate. I'm not just talking sex, but passion for life.   Of course you are in a weird place right now, and of course you wouldn't know what you are doing, where you are going. You, my dear, are entering uncharted territory. You are physically changing dramatically, and with those physical changes come emotional changes. Instead of hating what is happening to you, instead of hating the changes, I think you need to fully embrace the new you. Celebrate because you are going where you wanted to go.   But it's hard to understand the why and how when you are right in the middle of the transformation. I think butterflys don't like it when they first change. They used to be one thing, and everyone around them knew what to expect, they knew what to expect as the catapiller. Becoming a butterfly means that they have a whole new skill set to learn, they must learn to fly, they must learn a new way to eat, they must learn a new way to interact with everyone around.   You have all this new found energy, that you are not used to having. Of course you want to shake things up because you now have enough energy to want something more, something different.   I think your needs go beyond the bedroom. I think right now you need a little apprication, because we all do. I think you need some extra TLC because you are changing so rapidly, and change can be very scary. But I think if you want more romance, you will need to be more romantic in turn. But only you and your husband can decide what is romantic for you. Latenight pic-nics under the stars, love notes, camping trips, dancing... all different.   Perhaps that's it! Dancing! I know that ballroom dancing is making a comeback bigtime, and for good reason. It's great excersize and romantic at the same time. It will give you a way to connect with your husband on an intimate level, that doesn't involve being naked, but rather on a different level that is just as important as sex.   But one thing I think is important here. You need to find something that you are passionate about that has nothing to do with sex. You need to channel this new energy you have into something constructive. I don't know if you have communtiy parks and recreation centers where you can go learn a new hobby like painting or ceramics or woodworking or soemthing like that. You might look at your working situation, maybe transfer to another group or take some classes that will further your career. (my career is one of my passions) Perhaps volunteer with an organization that you feel strongly about, the local animal shelter, homeless shelter, or battered woman's center. Get involved with politics or the local gardening club. Start a catering business where you only do children's parties. Buy a new video game....   Your husband and children cannot fulfill all your needs. I don't believe it is fair for you to ask them too either. You need to find something else you can focus on, something that gives you passion, or fires your smoldering passion __________________
vinesqueen

vinesqueen

1
 

The Band is taking the easy way.

so many of our bansters, our celibrated Rabbits, it really does seem like magic. It has worked almost like magic for my husband, who most definately is a Rabbit.   Something that has me viewing eating as a chore many days MUST BE MAGIC. Something that has given me back my life MUST BE MAGIC. Something that has given me back my husband MUST BE MAGIC.   In many cases the only difference between magic and technology is understanding the science. Since they don't know exactly why the band work, because they only theorize that because of the way the band is place people feel satiated.   This is in some respect the easy way. I mean, I can't even begin to count the number of people who've lost 50, 75, 100, 150, even 200 pounds with the band. For the first time ever for so many people, they have success. THEY HAVE SUCCESS. Not only have they lost the weight, but they have kept it off. They have success. THEY HAVE SUCCESS.   This is from a thread earlier from this evening. http://lapbandtalk.com/showthread.php?t=14566   So, what's so wrong about taking the easy way? Why does it make it better if it's a struggle than if it is easy to lose weight. Is the weight loss less valuable, less worthy of celibration than if every ounce is a struggle like mine? Need to start an entire new thread.
vinesqueen

vinesqueen

1
 

Turtle Tribe call to action.

TURTLE POWER!!!! We are slow losers. But we need to demand answers.   I've been thinking about this for the last forever. Or at least it feels like forever. Why are we so different, why doesn't the weight fall off of us like it does our rabbit sisters and brothers?   So, I decided that instead of ranting and raving about not losing weight, crying to the folks that can't help with the underlying problem, I decided that I would start crying to medical doctors, not to therapists.   I went to my PCP and demanded answers. He couldn't help me, other than putting me on thyroid meds, which as it turns out I needed. But he couldn't help beyond that, and I haven't seen much activity scale wise from the increased thyroid function. He said I should find an endocrinologist, and good luck. Not much help there, but I have a sneaking suspicion that he was baffled, well, basically because he told me "I'm baffled."   So I went to another doctor demanded answers. He couldn't do anything, but he did refer me to an internist. She's wonderful; she doesn’t downplay my problems, or my concerns. She doesn't blame me for being fat, she doesn't view all my problems through that if-you-lose-weight-your-problems-will-go-away lense.   And who here hasn't had all their medical problems blamed on their weight? I think that might be why we, as turtles, haven't demanded answers, demanded that they figure out why we can't lose Wight on 1200 calories, or 1000 calories or even less. We think that if we just follow the Bandster rules and guidelines like good banisters, that if we do, the weight will fall off of us. I mean, this works for everyone else, why doesn't it work for us?   Because I think there has to be something else going on with us. Medically speaking, there has to be something that is keeping us from losing weight. If all the literature says that women will lose 1 to 2 pounds a week eating 1200 calories a day, if all the banding literature says that we should expect to lose 1-2 pounds a week, if we follow the rules.   Well, we are following the rules. We are eating within the stated guidelines, or if we are too tight we eat less, we exercise, we drink water, we attend support groups (LBT if nothing else); we do all these things and in most cases see a 1 to 2 pound loss a month.   So, how long do we beat ourselves up? Why shouldn't we get discouraged and stop trying because, just like every other wild hair-brained scheme to lose weight, this one doesn't work either.   Someone said that their doc said that if the thyroid med didn't work that we couldn't blame the medication, which I took to be one more example of blaming the fat person. The implied message that I took away was if it doesn't work, it's your fault, again. Well I say rubbish. It may be that the thyroid medication isn't the answer, but there has to be an answer somewhere.   So, if you are a true turtle, or even a winded wabbit, call your doctor and demand answers. Don't take no for an answer, don't take, "if you just lost weight" for an answer. If your surgeon's office can't help, talk to your PCP. If she can't help, demand a referral. Cry, weep, and threaten a break down if you must, but demand those answers. Don't let them shuffle you off to see a therapist as the only course of treatment either.   I think we owe that much to ourselves. We owe that to ourselves, our families and loved ones. We even owe it to the other turtles who come after us. But mostly, we owe this to ourselves.
vinesqueen

vinesqueen

1
 

Fears

The other day the lovely Delarly posed a question for a fun Friday thread -- what are you afriad of.   Well, I'm afriad that I have Cushing's but at the same time I'm afraid I don't have Cushing's. I know that doesn't make sense, but that's where I am. If I don't have it, then I have something even more rare and weird, possibly something call something like "metabolic disorder X..." Oh good.   But if I have Cushing's then what kind do I have? I'm afraid I have a brain tumor. I'm afraid I have some tumor on my adrenal. I'm afraid I have lung cancer. Tumor. That word echos in my brain, in my head, in my very soul. I'm not used to being afraid. I picture myself as more the fearless type, but I cried myself to sleep lastnight.   I'm afraid that if I have Cushing's I'll be part of the 20% that isn't cured. I'm afraid of more surgery. I'm afriad that the recovery will be as awefull as it has been desicribed by some of the folks that have recovered. One woman said that she was in constant pain and it was like she had fybromyalgia. Okay, I had to laugh at that, if the worst of her recovery was feeling like she had fybromalgia, then sign me up. You see, I have fybromalgia.   It it worth walking through fire? I guess the real question is more along the lines of why wouldn't it be worth it to become healthy and have no more symptoms.
vinesqueen

vinesqueen

1
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