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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
 

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
 

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
 

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
 

Restless legs

I've had restless legs all my life, so does my mom. I've found that if I eat LOTS of broccoli it seems to help. Unfortunately, not even I can eat 8 servings of broccoli a day/night. I take extra folic acid supplements and that seems to help. My mother read an article in Prevention magazine about 800 years ago and they suggested extra folic acid as a possible treatment/cure. My entire bed gets destroyed when I sleep, On the nights I don't/can't sleep, I'm absolutely astounded that when my husband get up, he can just smooth down the covers on his side of the bed, and of course, mine hasn't been touched. When I sleep alone in a bed, everybody's side gets messed up! I've been taking Mirapex for about 3 years now and it really makes a huge difference in my restless legs. The difference is in getting to sleep, or being miserable until I drop from exhaustion. You see, for me, when it's bad, it isn't a case of wiggly legs, but flailing about like a woman possessed by demons. I'm sure I'd have been burned at the stake! When I'm feeling compelled to audition for the Rockets, I find it's just easier to get up and high step round the house until I can't move another muscle. (Usually only when I run out of the Mirapex.) If I lie on my tummy, I just do flutter kicks, like I'm swimming, then my husband kicks me out of bed. Not really, but I’m sure he wants to kick me out on night like that. Instead, I take pitty on the poor man, and go wiggle and vibrate in the kitchen until I’m ready to drop. Someone suggested heavy blankets to keep one's legs quite... what torture that would be for me! My ex-husband would get fed up with me and my legs and would try to physically restrain me... what torture. As far as I know, RLS and panic attacks have nothing to do with each other. To give you an idea of the difference between the two, consider these the following: RLS is sort of like that guy who sits next to you with his leg wiggly, and just won't stop wiggling it. Bouncing that knee, like there was an imaginary baby being entertained. Wiggle, wiggle, wiggle, wiggle, wiggle, wiggle, wiggle, wiggle, wiggle, wiggle, wiggle, wiggle, wiggle, wiggle, and wiggle. Panic attacks, on the other hand... AHHHHHHHH!!!!!!!!!!!!! Impending DOOOOOMMMMMM and AHHHHHHHH!!!! Impending DOOOOOMMMMMM!!!!!!! Impending DOOOOOMMMMMM!! and AHHHHHHHH!!!!! KIDNAPPERS!!!!!!!! and AHHHHHHHH!!!!!!! Impending DOOOOOMMMMMM!!!!!! and AHHHHHHHH!!!! SPIDERS IN MY SHOE!!!!!!!!! and AHHHHHHHH!!!!!!!!!!!!! and AHHHHHHHH!!!! MISSING BABIES!!!!!!!!! and Impending DOOOOOMMMMMM!!!!!!!!!! and AHHHHHHHH!!!!!! DEATH !!!!!!! and AHHHHHHHH!!!!! Impending DOOOOOMMMMMM!!!!!!!! and LOOKOUT!!!! CAR CRASH!!!!!!!!!! and AHHHHHHHH!!!!! SPIDERS!!!! Impending DOOOOOMMMMMM!!!! and AHHHHHHHH!!!!! WATCH OUT!!!!!!!! and AHHHHHHHH!!!!!!! DOOOOOMMMMMM!!!!! and AHHHHHHHH!!!!!! Impending DOOOOOMMMMMM!!!!!!! And DANGER!!!! DANGER!!!! DANGER!!!! DANGER!!!! DANGER!!!! DANGER!!!! But that's probably just me.
vinesqueen

vinesqueen

1
 

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
 

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
 

ramblin' ramblin' rambin'

Nothing special planned for the weekend. I was going to spend some quality time with WoW, World of Warcraft, if everything co-operates. Hope to get a movie in on Sunday afternoon.   I spent about and hour this afternoon trimming bushes and waging war against the blackberries. Oh the Blackberries! Nothing says "abandond property" like blackberries! Sure the English Ivy will take over almost as fast, but some how it looks genteel as opposed to abandonded and unloved. But I topped off the giant yardwaste bin (not composing because of the blackberries) and a medium sized garbage can (again, not composting because of the blackberries.)   It's almost 3 am and I'm wide awake. I've been up since 7am and good grief. Kind of figures that the day I take a break from testing I'd be up all night. I don't care! I'm making a break from the Tyranny of the Jug!   Still no word from Chris at OHSU, I had called thrusday morning and left a message, I had hoped that she would call, but no such luck. *sigh*   I heard back from my niece tonight. I strongly suspect that she too has Cushing's. She saw her PCP, and he send her to an Endo requesting RUSH testing. She actually saw the Endo the next day. Doesn't look good, Her hump isn't humpy enough, she's not weak enough, her stria isn't red or wide enough, but he did order some blood tests and a UFC.   My son came home bragging that he'd gotten to see a Pirate rock band at the local mall. Every Friday they have live music on the stage, as well as several other nights, and tonight they had a group called Captain Bogg & Salty Spud and his girlfriend BabyGirl (I"m working on a new nickname for her, this week I'm calling her BabyGirl) bought all their CDs and had a really great time. Apperently they group had a FisherPrice, My First Mosh Pit... When I ripped the CDs to my harddrive it came up as Children's genre, so there were lots of kids in the audience. So there you go.   I'm detecting a theme to his latest gifts to me.. Pirate CD (but not pirated one ), pirate playing cards, pirate rubber ducky, and my very own tooba pirates... Well, I'll be well prepaired for International Talk Like a Pirate Day, Sept 19th. (I'll be having my 3rd anual Pirate party... on 9/16, since ya can hardly have a rip-roaring Pirate party on a Tuesday Depending on how I feel tomorrow I might see if I can get my husband to take me to the SeaFair Pirates landing. Yeah, like I can handle the crowds... LOL!
vinesqueen

vinesqueen

4
 

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
 

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
 

Week at OHSU.. no CSS

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

vinesqueen

1
 

no home Dex.. freaker/tweaker....

they wouldn't send me home with a precription for the dex, so I'm still in the "test" phase. I can only hope they got the numbers that I need.   Yesterday I had another one of those frantic freaker/tweeker episodes. Heh, I'm sure I'd be arrested for being intoxicated in public! I ended up walking in a circle in my kitchen for over an hour... When my brain started to work again, I taught my spud boy how to make a drink for me. He's not wild about giving me booze, but alcohol and cortisol "eat" each other, so I can only hope that one or more stiff drinks will bring me out of it.   I'm so tired of this. I went to bed lastnight at about 3 am, was wired until about 4:30, up again at 6am and then at 8 am again. I am pretty sure this UFC will be really high, but I don't "need" any more high UFCs....   And I'm rambling again.
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
 

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
 

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
 

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
 

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
 

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
 

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
 

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
 

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
 

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
 

OHSU, part II

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

vinesqueen

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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

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