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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

 

My complete list of NSVs

Here is my complete list of NSVs (non-scale victories) today. Since I am not seeing any change in the scale, I decided that I needed to review my progress, to see how my life has changed since March 14th, 2005. Because I was so distraught earlier this week because I listened to the damn scale, I decided I needed to list them all in one place.   If you are not currently tracking your NSVs, I really want all y'all to start tracking them. Besides, when we are all invited to the Oprah show we need to have some evidence besides what the scale says, right?   My most important NSV is that I haven't died from respiratory failure.   03-27-2005, 11:04 AM I finally have an NSV! my rings fit again! And I don't have the terrible edema problem I developed over Christmas any more! Woot! Two NSVs for week two!   03-29-2005, 08:18 AM This is a gi-normous NSV. I haven't used my inhaler in five whole days! As many of you know, I have terrible acute and chronic asthma. Five days before my band installation, I had to be taken to the ER via ambulance. My asthma was one of the main reasons I got the band, that whole prospect of death by respiratory failure just didn't appeal to me. (..."I want a death by misadventure) My book bag doesn't seem as heavy as it was before I was banded. (and I do almost all my walking with that book bag) It doesn't hurt to stand at the sink when I do the dishes anymore. I believe it is because I can get closer to the sink because my tummy is smaller. I've lost an inch from my waist! Speaking of inches lost, I've lost a total of 11 from my entire body.   03-30-2005, 06:29 PM another day, another NSV! I ran up a flight of stairs this evening. I didn't even realize what I had done until after I had done it! And my had my 20 pound backpack on. I wasn't even winded when I got to the top either!   New crop of NSVs 4/5/05 Okay, one of the women in my math class wanted to know how much weight I’ve lost. “You’re looking good! How much have you lost?” My purple robe fits me! My jeans slide off my butt!   New NSV 5/7/5 Monday will be my eight week bandiversary. All my pants have been very baggy, so today I tried on a pair of pants I haven't been able to fit for 4 years and I could button them! Size 22 black jeans.   05-10-2005, 07:44 AM Sunday night I woke up because I was laying on something hard. I figured that I must have rolled over on a book or something like that. (I sometimes fall asleep reading). I felt around in the dark, but I couldn't find anything that didn't belong in my bed. The hard thing? it was my ribs.   05-19-2005, 11:20 AM the other day the weather was on the wet side, so I zipped my jacked. Just like that, without even a second thought, zuup up the zipper went. And then it hit me. I. Zipped. My. Jacket! No wiggling, no struggling, no thought! Holy weight-watchers Batman!   05-24-2005, 11:56 AM I got a great NSV Sunday night when I got home. My sweet son wanted to know how I was doing, with the band. We've been apart since I got my band 10 weeks ago. He said I looked really good, and that my face was full of life, and that I was glowing. Then I had to chase him down the stairs and out the front door, and around the truck. I RAN down the stairs, I RAN around chasing him until we nearly collapsed laughing!   06-21-2005, 10:09 PM Today I wore a pair of jeans I haven't been able to fit into since 2002. Today I walked 15 minutes to and from the restaurant for lunch, and I wasn't winded, and I didn't need my inhaler. Today I took a walk with my son and he had to tell me to slow down (of course the silly boy wasn't wearing any shoes...) Today I went grocery shopping after work, and then DID NOT collapse on the sofa all night.   06-23-2005, 11:23 AM Another day, another NSV. Today, not only am I wearing for the first time, a shirt I got for Christmas, but I RAN FOR THE BUS. Yes, you read that correctly, I RAN for the bus. It's not like there wasn't another bus in 5 minutes... but I RAN. Me! and I wasn't winded either! Heh, sure, I'm happy with all my NSVs but a part of me is wondering when I'm going to start having some weight loss!   06-26-2005, 09:40 AM And here I was, worried that I'd never have any NSV when I started this journey... Today, I needed a belt! Now, I'm not in any real danger of pulling a Jonathan in the grocery store, but my pants are uncomfortably loose. I didn't even think that was possible! So, I dug out an old belt that I haven't been able to wear and it fit! 1 notch down, 13 more to go!   07-13-2005, 08:29 PM Major NSV time! I had to get a pair of Khakis for my trip to NY this weekend. I was told "brown khakis" which don't really exsist... Anyway, I digress. I tried on a pair of 22, thinking they might fit. Nope, too baggy. I tried on a pair of 20s! They were on the baggy side! I got a pair of 18s, and they fit! I fit into a size 18 today!!!!! Okay, I didn't buy them because they were not pretty, but I could put them on! Oh my gawd, oh my gawd, oh my gawd! A size 18! I haven't been able to squeeze my pretty little self into a size 18 since my baby was small! Oh sure, my jeans aren't a size 20, but still! It looks like I'll be bringing some clothes to the Las Vegas Bash after all!   07-28-2005, 10:17 AM Okay, I apparently gained 3 pounds but I lost another notch on my belt! Woot! Maybe the best one of all... This morning I realized that I will never go hungry again. (it's a wolves thing)   08-07-2005, 11:28 PM This weekend at the Beach I discovered that forgot a jacket. So I had to buy a new one. I picked up a 2x and it fit fine. A little roomy but that's okay. Wait a second... The sleeves are a bit long. Let's try the XL. I know, I know, an XL? That’s crazy talk. Hey! This XL is pretty roomy... but the sleeves fit. So, I had this totally insane idea... What would happen if I try on a Large? oh, it's never going to fit, it won't even zip up. Nah.. I'm too fat for a LARGE. oh my gawd, she's actually going to try to put on a LARGE jacket??? What, is she nuts? Is she a glutton for punishment? No! She's the proud owner of a powder blue fleece Long Beach Washington jacket!!! SIZE LARGE   8-11-2005 I am not hording food anymore.   8-14-2005 I just realized that on my cross country flight to Syracuse NY I did not need a seatbelt extender. Not only did I not need one, I actually had wiggle room in my seat.   8-21-2005 Well, my NSV has to do with my hording. I gave 2.5 big black lawn & leaf bags of clothes to the help house. I was going to bring them to the bash, but I felt that they were more needed here. I got rid of them while packing to return to exile.   8-22-2005 back to school, and I fit into the desks so well my tummy doesn't even touch the table! No squishing into the desks!   8-25-2005 I just realized that I didn't have any trouble with the change in altitude or the change in heat this year. For the last 2 years going from temperate Seattle to the extremes of Pocatello were very hard on me. A week after being here I ran up 2 flights of stairs in the COB without being terribly winded or needing my puffer. I also have been handling the heat just fine. Of course, having an AC sure helps...   8-30-2005 I had to go buy a big skirt for my Middle Eastnern Folk dance class... Yeah, they don't want us to call it "belly dancing" here, they feel it has "negative connotations." Yeah, what ever, it's belly dancing. I went to several stores trying to find a skirt that would match the requirements, let alone worry about the size thing... So at the 4th and final store I found one, a cocoa dip-dyed skirt. The biggest one was a LARGE, so I wasn't too hopeful. But I was brave and went to try it on. IT FIT! I just bought a size LARGE skirt. Not 2X, not XL, but just LARGE!!!   Mind you, when I bought my Large jacket, I really suspected that the label was wrong, that it had been marked Large in error at the factory, an that it was some sort of cosmic joke on me. Sort of like that pair of size 18 pants that I was able to fit into (didn't buy but that's a different story). I felt that was in error as well. Maybe it wasn't an aberation, maybe it's the truth.   I feel like I have no restriction at all. I still haven't lost any more weight, but I'll take my size shrinking.   My other NSV is a medical one, and has to do with my leg skin graphs. In about 2001 I had a revision of one of my skin graphs from my motorcycle accedent. Every day since the revision, I had to wrap my leg in an ACE wrap to give it support so it wouldn't blow-out. I had such bad edema that if I didn't wrap it, it would buldge out quite a bit because of the nature of the graph. I stopped needing to bind my leg a couple of months ago. I simply don't need to any more, no more edema problem.   9/1/2005 My knees doen't rub together when I walk anymore. My belly roll is squishier and hangs a bit lower. This is an NSV because it is proof that I am loosing fat.   9/12/2005 This past weekend was the Bandster Bash in Las Vegas. I had to tighten the airplane seatbelt. Sure, I've lost 3 pounds since 2/29, but I'm trying soo hard to not focus on that. Focus on needing to tighten the seat belt.   At the Bash this weekend, I got several pieces of clothes. Okay a whole new wardrobe. When you wear your own clothes over and over, it is really hard to notice any difference. I mean really hard. I've been working my way into several pairs of pants that I haven't been able to wear in years and they are size 22. Yet at the bash, I found size 18 pants that were comfortable. What gives with that? Anyway, I have a few pairs of size 18 that are comphy.   9/15/2005 I've been looking at my body fat % and my current Fat Free Mass. If I don't put on any more muscle mass, and stay current where I am, I only need to lose 55 to 70 pounds, not 70 to 100 pounds. I think that's counts as an NSV. Of course, if I can manage to put on 15 pounds of muscle like NanaHarly (Pat in Virginia) did, then I only need to loose 35 to 50 pounds! Woot! I know what I'm going to focus on!   I was tallking to my DH on the phone and I casually crossed my legs. HOLY SH*T!!!! I CROSSED MY LEGS!!!!!   9/17/2005 As of today, I have had 46 NSVs. That amazes me. Today's NSV is that I dropped a .5% in body fat.   9/27/2005 I had an NSV this weekend of a sexual nature. Let's just say that I'm not as bulky.... My forearems and calves have amazing definition. My low belly is shrinking, and starting to gain some definition.   10/1/2005 My 50th NSV is that I am no longer The Great Crystal Dam in the bathtub. There was room on both sides of my hips in the tub! At this rate I'll have to invest in some rubber duckies...   10/2/2005 Spoke with my mom on the phone last night. She said it has been years since my voice sounded so strong. She said there wasn't any breathiness at all. I guess after years of severe asthma, I'd developed a sort of wheezy -breathy sort of way a speaking.   10/22/05 I had a fitness assessment done yesterday. While my aerobic fitness score wasn't very high, 22 out of a scale of 20-50 (needs work), my over all fitness level fell into the Fair range, and my blood pressure is in the Fit range. (mind you, I've always had good BP, except for the first few weeks I'm back in SE ID due to the altitude and heat change)   10/27/05 I am offically no longer Morbidly Obese, but simply Obese. Today my BMI is 39.6, so I might not even qualify for the surgery, if not for my co-morbidities, which are all under control.   My second NSV for the day is that I have been invited to dance professionally at a Greek restaurant here in town. It will be fun to be able to put on my resume that I'm a Professional Belly Dancer.   11/5/05 All my pants are starting to look like giant clown pants, none of them fit in the butt or thighs anymore. If I didn't have this damn thick waist, I would really be in honest size 18 jeans.   My black leather jacket is going to have to be retired soon. It's rediculously large on me now. The sleves alone now hang past my finger-tips and it looks like I could smuggle a medium sized ham in each shoulder. So I tried on my big winter coat, and now it really is my huge winter coat. It's about XX too big. It's fully reversable a suede stadium jacket, with lepord fake fur on the other side. I love this jacket, but next year, some other lucky bandster gets to love it.   It's important for me that last winter before I was banded I couldn't zip the black leather jacket up. There was a 2-3 inch gap that just wouldn't meet. While the stadium jacket fit, it was pretty snug. Not any more!   11/10/05 Lastnight I was using my laptop. In my lap. This means that I HAVE A LAP!!!!! Woot!   11/14/05 When I sit on the floor or in a hard chair, I feel the bones in my butt. Not only my tail bones, but other bones (probably my pelvic bones?) as well.   11/17/05 Okay, time to bump the thread. Last night while Iwas talking on the phone to an old friend from high school I again casually just crossed my legs. Without thinking about it. I know I've done this before, but it's a mind thing I think.   Other NSVs include belly dance stuff. My DH won a few auctions on ebay for me, a couple of B-E-A-U-T-I-F-U-L belts, a gorgous silk veil and a pair of harem pants. The pants looked impossibly small, even with an elastic waist. I just knew that they were NOT going to fit, but being the glutton for punishment that I am, I attempted to put them on anyway.   They fit! They are too shere to wear without a skirt, so that will have to be next on my list of things to get. The other victories around dancing are some of the skinny ones are asking me for help, since they cannot get some of the moves quite right.   I'm also getting really excited about dancing at the restaurant. I'll do that once I get home after Thanksgiving, and I complete my costume. I still need a top and a skirt I mean, I just bearly broke out of MO, and I'm going to be a fat professional dancer. What am I thinking? I mean, what am i thinking, other than I'm dead sexy and a fine belly dancer.   11/19/05 Okay, Thursday I passed up free donuts, and this weekend I've been busily working in my yard now that I'm home. Raking big fat soggy leaves, clearing flower beds, and the like.   DH is amazined at my level of energy, and so is son. I guess I'm a little amazed too, since for the last several years the only energy I've had at this time of year has been spent trying to breathe or something aerobic like reading or playing video games. I've gotten used to a more active lifestyle in ID with all the walking and PE/dance classes I attend. I routinely walk up several flights of stairs with my heavy bookbag, where this time last year I was using a rolling bag, and needing to take the elevator because my asthma was so bad.   12/09/05 Well, tonight I make my semi-professional debute again!   We had our dance department dance review Wednesday night, and pix will be forthcoming. We were great, several people told us that we were the best group on stage, so that was awesome!   I went out on stage, in front of an audience of maybe 300 or 400 people, and I OWNED the stage. I wasn't the slightest bit nervous, and I'm quite amazed at that, believe you me! I made eye contact with many of the audience, and I had the biggest smile on my face the whole time. Not only did I look like I was having a great time, I WAS having a great time!   The next NSV is my costume... my top was a crop tant top that I've added bead work too to make it sparkle. But the important part of that sentence is CROP TOP! Yes, that's right, I was wearing a belly shirt on stage, exposing my ample belly to the public, with my surgery scars clearly visible! And I did it on purpose!   Okay, this next one isn't an NSV, not really, and it properly goes on the "Skniny Bitches" thread, but here it is We had just come off stage after doing our two numbers and we were all still amped up on adrenalline. We were talking about how we had done, bla bla bla. A group of ballet dancers were there, I mean, right there and one of the skinny blond said to another skinny blond the snottiest comment I've heard in a long time. Okay, all the ballet dancers were skinny blonds, but that's besides the point. She said, in a loud voice "well, at least we weren't shaking our Bon-Bons." In the snottiest possible voice mind you. So, I simply said, with sugar in my voice, "well that's because you can't shake your Bon-Bon." And then I smiled so sweetly at her. (then she said that I was probably right, and the group of them walked away) So, I suppose that makes me a fat bitch, but I just decided that I wasn't in the mood to take crap from anyone.   So, the next part of the Bellydancing NSV is that I'll be dancing againg tonight at a local restaurant, and yes, I'll be dancing for tips, so Big Paul, you'd better leave now so you get here in time, and yes, you'll probably need to take out a second mortgage   So, finally, I'm doing this when I weigh 240 pound and not waiting until I get closer to goal. I'm doing this at size 22/24 and not when I get to my goal of 12/14   12/22/05   I'm less invisible. Last year at this same time I felt so invisible when walking through the halls at school. Now guys hold the door open for me, and men and women smile more at me. Perhaps they just needed a couple of years to get used to me, or perhaps I am more self asured and confident. Confidence attracts confidence.   This time last year I could not breathe. I was in and out of the hospital and making near daily trips to the ER, having several nebulizer treatments every single day. Since I've been home just about a week, I've used my inhaler much more often than usual of late. I've used it 3 times in a week.   This is a weird NSV, but I finally have doctors seriously trying to figure out why I'm not having the sort of weight loss I should. I guess I had to go on the Supermodel Diet for a month before they would take me seriously.   1/4/6 Today I went skiing for the first time in 5 or 6 years! Woot! It was a lot of fun, and I fit into my ski pants from 5 or 6 years ago. I'm so happy! Okay, this was a MAJOR NSV for the DH too because he went skiing too! Spudboy and I had to talk him into it, but he did it! I'm so proud of him!   I didn't use my puffer once while skiing, but was wicked cold because my gloves weren't good ski gloves. Oh, and I didn't have a water proof jacket either...   So, 3 for the price of one.   1/13/06 I just got back from several days in DC, for a scholarship symposium and job fair. I have a conditional job offer for when I graduate, if I can obtain a security clearance! Woot! That's an NSV, since it would be a major job!   I have a whole string of NSVs, the very most important one is that I went to DC WITHOUT AN INHALER. What's more, I didn't even need it. This is super significant because this time last year, and for several years prior, I couldn't go anywhere without at least 2 inhalers on my person. I had an inhaler in every single piece of clothing that had a pocket. Last year this time I had spent 10 days of the Christmas vacation in hospital, don't know how many trips to the various ERs. I didn't even realize that I didn't have an inhaler until the puddle jumper from Salt Lake to Pokey, AFTER my trip was almost done. I was constantly being mistaken for a much younger woman, and when I would talk about my son, people assumed I was talking about a baby or a very small boy. Oh if they only knew!   1/18/06 In class yesterday I realized that my belly wasn't even touching the desk in two of my classes!   2/7/06 I had two NSVs this week. One is that I went to a party where I only knew one person. Big deal? Yup, big deal since I am terrified of groups people. It's not like they are spiders or kittens or something like that, but I have avery difficult time with groups of people I don't know, I'm very shy. (yeah, who would believe that?) But I went to the party, and I was charming and talked to everybody. I don't think my husband would have recognized me....   The other NSV is that I've accepted that I'm not going to lose weight. Not until this Cushing's thing has been addressed or resolved. But because I've accepted it, I don't have to stress over it. I don't have to beat myself up any more.   Oh wait, one more NSV, I need to take my watch to the Jewlers to have one of the links removed from the band!   3/5/6 Well, I haven't had that many NSV's lately, or if I have, they have been lost to me.   I need links removed from my beautiful watch, and I can wear more of my rings. I have to stop wearing one of my rings because when my fingers get cold (winters in SE ID are COLD!) it flies off my finger! Woot!   So, 3 NSVs for Feb 06!

vinesqueen

vinesqueen

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