vinesqueen

Nice tat Penni! Happy birthday too. Now, a quick hi-jack... you should change your avatar to the font pix of this thread. Serious about that too.

I spoke with my OHSU Endo about the possibility of this, and he said nope, he highly doubted this was my problem because I have an actual brain tumor, not a false one. He is quite sure that once I get the Cushing's resolved the headaches will go away. He figures that my headaches stem from not having enough cortisol, after having too much of it. I hope that makes sense.

Hi everyone, I just wnated to post a quick update on my week here. 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: Love you all, Courage and Strength, Crystal

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!

Congrats Chris! Have you taken a look lately at your NSV list? I know that I always feel better when I see where I've been. You might put on your before clothes for a while, get a good laugh out of that! You've done a great job in maintaining. And as for "eating more than I'm supposed to...." I think that as bandsters we get a squewed picture of what is "normal." We think eating 1/4 cup of food is a "normal" poition, when in reality is is a very tiny portion. Good job, you've worked really hard!

thanks for the update Shelley, we've been worried about you. Don't worry about losing weight right now. You need to focus on gaining your health! (((hugs)))

very small dog and very bigs one have shorter life expectancies. Mid-sized dogs seem to statistically live the longest. (based on the charts in our Vet's office. Nana~ just make sure your new dog has a job. They need jobs. It's critical that they have a purpose, otherwise they are not balanced. I'd get a book on dog psychology. Cesar someone has a very good one. He also has a show on ... the national geographic channel. My sister has the dish so we watch it when we visit. Dogs need jobs. Cats need staff. Congrats on your new family member!

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. :cool: 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!

ROFLOL! we are told "anything that will fit up a straw" qualifies as Liquids... My mother can't figure out how to not swallow air with a straw, and I can't figure out how she does it. Count me in for Straws!

It's likely that it was a case of DNS cashe poisoning. hmmmm, mayby Xsite postings. I didn't witness the behaviour, but from the description, that's what it sounds like to me. I seriously doubt that anyone what was recently banded has the capability to pull those off. my bet is that it was a co-incidence, not a disgruntled thing.

I almost NEVER go to grarage sales. I did when Spud was a baby, but well, no cause to go now. I think the last one I went to, the first one in ... years was golly! 10 years ago. I bought a book case. A huge solid book case. I paid $25 for it. I thought it was pine, but when I went to move it, I coudln't pick the darn thing up! Shows you what I know about wood... It is 8'x3.5' and it weighs about 70 pounds. Wood, not particle board. My husband thinks it walnut. Or maybe lead.

All I can tell you is that I sure hope for the best, and that it really isn't cancer. I'll be thinking about you, take care!

Capt'n Jack, you know me so well! I've added these shops to my "list of places to go" Yeah, I'm that much of a geek that hardware stores are fun places for me to shop. "oh look! it's a Splinly 3/8" socket! Cool!" :help: I wonder if there is some sort of intervention for folks like me... Gosh, I sure hope not.

Good luck with that Babs... that no one knowing you or caring about you... Not gonna happen, You SB YOU!!!!! Oh, but no one knows me either...

well, yesterday I drove to Portland and got a Mid-line... Today I had a massage and a nap. Then I grilled some shrimp and stole some plants from my neighbor. Well, it isn't really stealing if you ask first... I was very careful, and when I was done you couldn't even see where I'd ravaged their garden.. but they had some sedum that I haven't seen before, and I want it for MY rock garden. Tomorrow I pack up and make sure I have enough toys to keep me entertained while I wait for various appointments. We head down to Portland super early Monday morning, like 4 am so I'm there in time for my 8 am appointment. Because I'm so High, I full of energy and I'm going to see if Mike will take me to Home depot so I can get some hinges and some paint so I can make a deviders from the bi-fold doors I just scored. I need to get several sets of hinges and have Mike drill them and attach them and then I'll paint them. I figure I'll use them on one side of my car-port as a break. Wheee!

Oh yeah! Sumber party at Nana~'s Woot! Just make sure you have enough energy to make Breakfast in the morning!

Only if you show up in your speedo!

Miper, you are telling my story, you know that, right? I was so frustrated that I couldn't lose weight that I was too tight for a month, and lost a whopping 1.5 pound in a month. You've been diagnosed with PCOS and that garbage syndrome X. I call it garbage because I think so many doctors see PCOS and your other symptoms and instad of trying to figure out what is really the problem, they create a syndrome. And if it's one thing doctors can't cure, it's a syndrom. Miper, it's time to start demanding answers. I mean, real answers. Not you have a syndrome (and if it's one thing doctors can't cure...) Please start researching Cushing's. One of the main symptoms of Cushing's is obesity.

I watched my mother wait her whole life, it was one long "we'll go do X when I've lost Y pounds." I decided that I would never let my size or weight stop me from doing anything. The only time I let it stop me if if I phsycally can not do something because I dont' fit the saftey requirements. courage and strength!

And as a tool, just make sure you are getting the right tool for the job. Just as a hammer is useless when you need a screwdriver, the band minght not work if you have something else causing your weight problems. I was banded, but didn't lose weight to speak of, 20 pounds is hardly a loss. But if I hadn't been banded, I am convinced that my brain tumor would have never been found.

Hurray! Hurray! I'm so very happy everything has gone so well for you Diane! I've been thinking about you, hoping everything is going well. I'm sooo sorry you are on so much steroids. :faint: I personally HATE it when I have to be one them, but that's me... I've been thinking about how you don't want this to affect your kids. I just wanted to let you know how my situtation has affected my boy-ohs. I've had some serious health episodes all my life, all my son's life. And it really has affected him. He's always been a sensitive boy, but I think my health issues were part of that. I think because I've been so sick, my son has gained a greater sense of empathy. A sense of needing to be sensitive to the needs of other people. All my boy-ohs have developed a greater sense of empathy. And by my boy-ohs, I mean all the teen boys that hung out at my place, before they all grew up and became adult men. I sure hope that made sense. I'm on a raging steroid High and my headache is particularly bad this morning. I pray that you have had a complete recovery and a cure!

So, if I can get ahold of my doctor today, it looks like I"ll be in surgery next week. But this will just be the first of hopefully, just one more surgery to remove the tumor. This first surgery will be a CSS, a cavernous sinus sampling, where they thread a cathiter up through my entire body, from groin to brain, gathering samples along the way. http://abclocal.<wbr>go.com/wjrt/<wbr>story?section=<wbr>healthfirst&<wbr>id=4511973 is a link to a news broadcast of one woman's experience with Cushing's. I met the woman in the story on Tuesday, she's lost about 60 pounds since this video segment was filmed.

One of the things I've learned because of having Cushing's is that I only have so many spoons to go around. It's called The Spoon Theory. Every day, you are given a random number of spoons, but every activity you have will cost you a spoon. When you are out of spoons, you are done for the day. Things like take a shower, get dressed, cook a meal, go grocery shopping, talk on the phone, mow the lawn or go to work or think about complicated issues or projects all take a certian amount of energy or spoons. If you only have 25 different activieds that all require a spoon, but you only have 10 spoons to spend, what do you do? What do you do if you don't know how many spoons you get each day? There are so many important cheriable organizations out there, but you only have so much energy and resources to spend. You only have so many spoons. I think it is wonderful that your organization is focused where it is, but if they are asking for spoons you don't have, you don't have them. But car washes are good excersize... Oh la la charity carwash girls...

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.

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.