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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
 

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
 

Holy meth-addict Batman!

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.
vinesqueen

vinesqueen

2
 

Heading down to OHSU tomorrow--bring it on!

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!
vinesqueen

vinesqueen

2
 

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
 

freaker/tweaker

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.
vinesqueen

vinesqueen

4
 

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
 

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
 

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
 

Dr. Bruce Banner... Cushing's patient?

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...
vinesqueen

vinesqueen

1
 

down 5 pounds this week

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:
vinesqueen

vinesqueen

3
 

Cushing's Syndrome

1/27/06 I feel like this all make sense, like I've been working with a jigsaw puzzle with out the box, blindfolded. The more I read about this, the more it is just an ah-HAH!   I figure I'll just track my cushing's stuff here, just to keep it in one place. This is what I posted on 1/24: Well, I have a tentative diagnosis. The interist thinks it is very likely that I have cushing's syndrome. So, I go for a new round of tests Friday to find out what kind I have, so i can start a treatment plan.   I'm in a weird place. This sort of makes it real, but yet not real. I don't want to go to work, but well, I have to. I just want to go to bed and sleep, which is what I usually do when depressed. I thought I'd be happy with an answer, but I have a head ache. My DH reminds me that it is only a tentative dignosis, even if it makes sense.   Cushing's Syndrom http://www.niddk.nih.gov/health/endo...s/cushings.htm Cushing's syndrome is a hormonal disorder caused by prolonged exposure of the body's tissues to high levels of the hormone cortisol. Sometimes called "hypercortisolism," it is relatively rare and most commonly affects adults aged 20 to 50. An estimated 10 to 15 of every million people are affected each year.   ... Treatment depends on the specific reason for cortisol excess and may include surgery, radiation, chemotherapy or the use of cortisol-inhibiting drugs. If the cause is long-term use of glucocorticoid hormones to treat another disorder, the doctor will gradually reduce the dosage to the lowest dose adequate for control of that disorder. Once control is established, the daily dose of glucocorticoid hormones may be doubled and given on alternate days to lessen side effects.   *** So, I've had a few days to get used to this. Funny. Right now I'm not scared of this at all. I could have a brain tumor, and I'm not scared. I'm not stressed, I'm not freaked out, well not very freaked out anyway. Weird, weird, weird.   I guess part of it is that now that I have a name, or even might have a name, it isn't scary. It's like in Fantasy, you never give your true name to the bad guys, and once you have the true name of a demon you own it. You control it, and it has no power over you. I sort of feel like I have it's name. This thing that has prevented me from the weightloss success I so desperately crave.   I called my sister last night. Under pain of never speaking to her again (I know, an empty threat) I made her promice that she wouldn't tell our mother. I just really can't deal with my mother having to come up with her own rare-and-potentially-deadly-but-very-treatable disease just so she gets all the attention. I didn't tell her that it was potentially deadly, but that it was rare and treatable. No sence causing her stress where she doesn't need it. She said she couldn't deal with our mom needing another new rare-and-potentially-deadly-but-very-treatable disease either.   Today I had more blood work done because that's what they do, more blood work. I was able to get my appointment moved up a week, so I'll see the internist next week instead of in two weeks. 3 days is easier than 10 days.   ****   I have to admit that I'm afraid that they won't be able to do anything to help me. That I'll be fat forever. That there will be nothing that they can do, and I'll just have to live as a failure.   I try so hard to not read about other people successes. I know that makes me so very shallow. But I can't help it, I feel so miserable when I read about how someone with a lower starting BMI has lost 75 pounds in the time I've gained and lost the same 5 pounds. I feel bad that I can't share in their joy, that I can't celibrate with them,
vinesqueen

vinesqueen

1
 

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
 

Cushie fun day in Portland

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)
vinesqueen

vinesqueen

2
 

CSS Bound

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.
vinesqueen

vinesqueen

1
 

crazy gardener lady

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.
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
 

calories in/out debate

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.
vinesqueen

vinesqueen

1
 

Calling Turtles to action, once more into the fray!

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!
vinesqueen

vinesqueen

2
 

Boozin' boozin, just you and I!

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
vinesqueen

vinesqueen

2
 

benign breast mass

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.
vinesqueen

vinesqueen

4
 

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
 

AI part II

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.
vinesqueen

vinesqueen

3
 

Ah-hah, mystery explained

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.  
vinesqueen

vinesqueen

3
 

A memorial weekend

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.
vinesqueen

vinesqueen

1
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