jude048

Dr. C I had my surgery on June 2/06. I lost well while on Optifast and as soon as I started eating any kind of "real food" after surgery I started to gain and I am still gaining. I had my first fill yesterday - 1cc in a 4cc band. History: I had Cushing's - I had surgery for a pit adenoma several years ago. gained 130 lbs when I had cushings over 4 yrs - They told me my tumour was spidery as opposed to in a nodule for removal and that they took as much as they dared so as not to disturb optic nerve. I was having huge problems with peripheral vision and it was pressing on the optic nerve. Lost all weight after surgery - over 1 yr went down to 132 lbs from 265. Then suddenly about 18 months later gained 70 lbs in 7 weeks then crept up again to 249. Endocrinologist assured me that it was not recurrent cushings even though I once again had high ACTH and cortisol lovels. So of course I must respect the "experts" and accept their diagnosis. Since I didn't have "Cushing's" according to the experts - I decided that I would try this surgery - I long to be my "real self" again. She has been lost for some time and it has changed my entire life - every aspect and not for the good. There is no way that anyone can understand what it is like to experience the "disdain" of the world as a "fat person" unless they have experienced both sides of that coin. So here I am now - banded - $15 000 poorer - and I am still a diet "failure". Since the last gain - I have always eaten "low cals" - when I was on opti-fast - I had 2 per day and green veggies at night - around 600 cals and lost. Now of course I am bumped up to 900 - 1000 cals and I am gaining. Questions: I think that the high cortisol levels affect: how many cals I can take in and lose/gain - Am I correct?? Of course my pituitary does not work anymore because it was completely removed. I take 0.25 eltroxin daily. How is this going to affect my cal intake and loss/gain. People keep telling me to eat more - I can't - doesn't anyone get the "FEAR" I have - and doesn't anyone get that I know my body best??? I know what my food intake has been for years and my cals have always been low - below 1200 on a daily basis for years and still gaining - Sorry for the long post - but do you have any "wisdom" that you can share and perhaps an opinion about how my cortisol and ACTH is going to affect my calorie intake???? I appreciate your just reading the post. thanks so much! jude

Hi Everyone! Just to let you know I finally got back to Toronto yesterday for a defill. I was still unable to eat anything but soup and ice cream. It has now been 4 weeks that I was unable to eat. Yahoo! Tonight I actually ate some tuna and some cottage cheese!!!! Dr. C gave me shit for eating ice cream - I told him that I'd had ice cream 3 times in the 4 weeks. He was not at all impressed. He does however want me to see an endocrinologist since I am still not losing what I should be losing with my band. So I guess I will be starting on another ride - this time on a different roller coaster. My mom has improved enough that they are going to set her up for long term care in a nursing home. The wait list here is 700 and they say it could take up to 6 months for her to be placed. In the meantime they are going to keep her in the hospital in a chronic care unit but it is very nice and the staff are great!!! She has been "doing her thing" though. One night last week - she decided to leave the floor for a smoke and got lost and couldn't find her way back to her room - didn't know the room number or the floor - etc - she told whoever found her that she was in a hospital in a city 60 miles away!!!!!! We chuckled about that one!!! Of course she got "warnings" about leaving the floor and was told if she tried it again they would put a "tracking device" that sounds an alarm on her ankle. Just a few nights ago - she decided she wouldn't try leaving the floor as she was told -- so she decided to have her smoke in the john and set off alarms - so then they told her that they had to lock up her smokes and her lighter. Now she is really pissed at the entire institution!!! You have to understand that she is a 78 1/2 yr old woman who weighs maybe 105 lbs - has been smoking since she was 17 and has cancer all over and Alzheimer's - I mean -- is she "cute" or what!!!!! Talk about spunk!!! You gotta laugh or you would just start to cry!!!!!!!!!!!!! Anyway, I have been spending days there from 9:00 am - till about 6:30 pm. That way, I can take her outside for a smoke and she doesn't get into all kinds of trouble. No nursing homes in Ontario allow smoking anymore and since she will be in a "secure" area because of the Alzheimer's she will not even be able to go outside at all. That is when the fun is really going to start - grinning from ear to ear!!! Other than Monday and 1 other day - I have not taken any days off - but YEAH!!!! I am staying home tomorrow and my 4 grandsons are coming for dinner and I promised them they could build their own personal size pizzas for dinner exactly the way they want them. It will be a great fun time for me and just fun and no stress! I have managed to lose 1 more pound! Not much considering I haven't been able to eat for 4 weeks but hey at least it is not a gain. Thanks everyone for all the support - keep working hard - will catch up with you all in a week or so. jude

Hi Guys, Trying to catch up on posts - sounds like you are all doing fairly well! My mom who seemed to be on her absolute last legs - decided to take a blood transfusion. She got one on Thursday and another one on Friday and was actually up sitting in a chair today. She walked with a walker around the floor of the hospital this afternoon! They say that they will be able to give her some physio and get her well enough to send her to a nursing home. This woman's blood pressure was 80 over 40 for a few weeks and she had lost so much blood her hemoglobin was down to 62 which is about half normal and now she is making a comeback! I honestly do not know where she is getting the strength to fight - I am exhausted and I am not even sick!!! I have spent several nights sleeping over at the hospital - and going at 7:00 am and leaving between 10:00 and 12:00 pm. Catching cat naps here and there. My sister and I finally decided to trade off days and only one of us is going each day now. So I did not go Friday and I will get a break next week a couple of days. All of this time the stress I guess has caused my band to be VERY tight. I have only been able to eat Soup up till yesterday. Because I was home yesterday and was having grandsons for dinner - I cooked. I had some mashed potato and meatloaf for dinner - probably about 2 tablespoons of each and did fine with it. Just me and 4 boys for dinner. However, today I took some to the hospital for my mom for dinner and I tried to eat some and PB'd it all up! THE GOOD NEWS IS: the ticker is no longer a lie - I was down to 219.4 a couple of days ago!!! Thanks for all your well wishes, support and prayers - much appreciated!!! jude

Hi guys! Well today is day 11 with my mom in hospital. My sister and I have both been there day and night. Just coming home for a couple of hours, shower and change clothes and go back. Finally today we decided that we would trade off and not both be there at the same time. I went in this am early and I am now home and my sister is staying till whenever. They have put her in a nice palliative care suite which is a private room and it has a sofa so that one of us can sleep there and stay over. One of us has been sleeping a bit and the other sitting by her bed sitting vigil. However, it is starting to take it's toll - at least on me. She is not eating, sipping tea and Water. They are giving her morphine, haldol and lorazipam to make her comfortable. I have no idea how or where she is getting the strength to hang on but she is somehow!!! Since having my fill on the 23rd of August - I have not been able to eat anything since I ate the salad that Marie chose for me over at Moma Rosa's. I am even having trouble with Soup. Can not eat cottage cheese, can not eat Beans, can't eat salad, - and have trouble with soup and even pudding. I have been sipping water and coffee and some soup and a little Protein shake (not much - hard to do at the hospital). I am in agony - I feel like I am "stuck" all the time. Going to toronto is just absolutely out the question - I can not, will not leave my mom - so I am just trying to get through it. Just had about 3 tablespoons of soup and am sitting here sliming into kleenex and taking huge breaths to try to make it feel "unstuck"................. The worst part is - I have still not lost that 7 lbs that I put on when I bumped my calorie intake up to 1200 on Marie's advice!!!!!!!!! I was not able to get the call in to the florists to put in for Marie's flowers, nor did I find a chance to email her and wish her well and I feel badly about that. Hope you guys did!!! So, despite not being able to eat anything, the ticker is still a lie!!!!!!!!!!!!!! jude

Hey Guys, Well another chapter in the life of............................. Had to take my mom by ambulance in to the hospital again at 3:00 am this morning. I have a baby monitor in her room and a "different than usual" sound woke me up in the night. I found her in a very distressed state. We sent her to the hospital and they admitted her. They are doing xrays to see if her blood loss is coming from her stomach or her lungs. They discussed giving her a blood transfusion but she has a DNR order, a Death with Dignity doctor's letter and a No undue measures to prolong life directive - so they did not do the transfusion. The doc says this might be nearing the end. She finally consented to taking morphine and for the first time in many months she is pain free at last. WOOPPEEE!!!! He is afraid that she has an infection in the lungs brought on by the cracked ribs from the fall 2 weeks ago and is giving her 2 different antibiotics for that. They are giving her pantaloc to reduce acids in the stomach in case that is where she is bleeding. So she is higher than a kite - talking about going dancing and having a few drinks with her friends and what a cheap drunk she is!!!!!! Grins!! Gotta find the humour or you would just start to cry!!!! I will have to wait out the next few days and see what happens and if there is any improvement. He said she could end up staying there in chronic care or perhaps it will be time to think nursing home. Anyway, just thought that I would let "my friends and support group" here know what is going on and I may not be posting much for a while! take care everyone. PS: The ticker is a lie! jude

Mandi, This lady who comes in on Weds - I have to pay for also. I pay for half of her wages and the gov't pays the other half. My mom actually was nice to her and they "got on" quite well. She is an early 60ish woman and they hit it off well. Last time we did this - we went through 4 different workers in 5 weeks! The one who comes on Thursday is a PSW through VON and it does not cost me anything. The gov't seems to be trying hard to help keep people at home where it is less costly to care for them than in nursing facilities. Which is good in our case. jude PS: The ticker is still a lie!

Well we were all guessing as to why they were training people at the clinic and it seems that it is official that Marie is leaving. There is big discussion on the Coburn/Mumford site. Apparently it is for a job in an OR at a hopsital that has better benefits. :confused: Anyway her last day is supposed to be Sept 1. What a shock - she has always been soooooo suportive and soooooo caring! She will be sorely missed. And I don't know how she kept up with the hours that she worked! Just thought I would let everyone know! Good Idea for everyone to get their own thread for rambling!!! jude PS: The ticker is still a lie!

hi everyone, Just wanted to let everyone know - some changes have happened. Since surgery, I have found that I was restricted in the am and had hot coffee to warm up my band and open things up. As the day went on my restriction eased and I was able to eat more without discomfort. Now, I still have the morning restriction but I now also have night restriction. During the afternoon it eases a little. Now this is interesting! Yesterday I was able to eat some watery cream of wheat near noon and in the afternoon had about 1/4 cup of cottage cheese. At dinner I made soup - the gardenay kind - 1 cup and it took major time to get it down - I had to sip, sip, sip. I also tried to eat some tomato wedges but it was difficult and caused discomfort - so I quit. Last night I tried a triscuit triangle with some thin cheese and some tuna on top - no go. One cracker and I was uncomfortable for a couple of hours. In total, I got in something like 534 cals yesterday. This morning the scales were at 220.2 which means I am about half a lb away from the ticker telling the truth!!!!! Now, as for Marie. It was cute - she sat across from me and when the salad arrived - she said - you know there is nearly 300 cals there in salad dressing. I said - yep! She said that is a lot of salad for $3.50 - I said yep! The she asked me when I got back to the office how much of it I ate - and I said perhaps a third - ok she said! Now when I was in the exam room we were talking about my mom - she asked me how old my mom was and I said - 78. She said well I am almost that age - I couldn't believe it!! So perhaps she is retiring!!! She didn't say anything though. I am getting extra care relief starting today! Yeah!!!! There is a respite worker starting today from 1-4 an extra 3 hours per week. I am not going too far today - in case my mom gives her a hard time but - I am going as far as my daughter's and will see my grandsons for the afternoon - but will be close by if there are any problems. Her blood pressure is VERY low - hovering 80/40 and 90/50. That is why she passed out and fell. It is too bad that my extra care comes two days in a row - Weds and Thurs but I will not complain - I am glad to have whatever time I can get to do my errands and have some "me" time. You know Yoda - you did a grave thing here - giving me my own thread - I feel like I can just ramble on and use it as my own personal space really!!!!:scalesno: Thanks for listening as always guys - much appreciated! jude PS: The ticker is still a lie!

Congrats Mandi!!!!!! That is just an awsome stat!!! You may not be able to eat much right now but the reward is awsome!!! jude PS: The ticker is still a lie!

Hi Guys, Thanks for the encouragement!!! It really does mean a lot! The day went off without a hitch. I was at the clinic early - 1:30 so Marie took me in - 2 new nurses - are being trained and they were observing and doing a little hands on. I opted for .4cc and Marie took everything out and gave me 1.4. She did it on the first poke this time and she was happy. She also said my port is quite a bit deeper than it was last time - saying it was loss of belly fat that makes it so. Water went down fine. I was officially down 4 1/2 lbs from the date of the last fill - and since I gained 7 after that fill - I guess I was ok! I am still not down to the ticker numbers - this am I was 220.6 so another lb will make the ticker tell no lies!!!!!!!!!!!!!!!! Anyway Marie made me go over to Mama Rosa's - actually she came with me - she said she sends people over all the time and had not been over and didn't know what they had on the menu. She wanted me to eat something I had to chew and I was going to have scrambled egg but she said no - get the chef salad - so I did and I ate about 1/3 of it - and I went back over to the office and reported I was ok and they called me a taxi and I headed for Union Station. I was actually early for my train and home by 7:30 so it was a smooth day. My daughter did the Nana-sitting and everything was fine here also so good day all around. I had some Soup for dinner and will stick to water and/or some coffee tonight. Will let everyone know tomorrow how it goes! PS: The ticker is still a lie!

Hey Everyone, Yesterday was official weigh-in on the Canadian boards so I weighed myself to record. (I have been shunning the scales) I weighed in at 226 and recorded it defeated as I was! It has been hot and humid for a few days and I know Fluid was a factor so I couldn't pass by those scales this morning without getting on. Weighed in at 223 which at least is not so defeating!! I have been paying particular attention on all three boards for posts about what people are eating. I have been paying attention to the caloric intake and even if people did not say, I was sort of doing the math in my head and there seems to be many who are sticking to lower intake. There was a great long post within the last couple of days by one person on the Canadian boards who has been very successful (almost at goal) and she has been "religiously" sticking to 1000 cals. That gives me hope that I can stick to a lower caloric intake and perhaps fool this body into not overproducing cortisol and losing - perhaps a little slower than others but losing just the same. I am going to the clinic tomorrow for a second fill. It worries me a little. I already have restriction - when I eat too fast or don't chew well enough - I get an IMMEDIATE reminder. I am going to stick at no more than .5 - perhaps .4 cc. I will not be seeing Dr. C again this time. He is not in the office until 3:30 and his first few app'ts were full because of being away. I have to catch that train at 5:30 from Union or there is not another one until 10:00 pm and I wouldn't get home till midnight. So Marie is doing my fill again this time. I need to have some time to go get something to eat or drink and to make sure that I am OK before getting on that train. The logisitics of going back especially on short notice are horrendous. My mom can't be left alone - not even for 5 minutes now. Getting Nana sitters is way more difficult than getting sitters for kids ever was. So tomorrow night - will be an interesting one and will let you guys know how it goes. By the way - Have I said "THANKS" for all the support???? If I haven't - then "THANKS" for all the support! It is great to have such great caring online buddies! jude PS: That damned ticker is still a lie!

Meg, I take Celexa and I find it a far superior product with fewer side effects!!! I have been taking it for several years. 20 mg 1Xdaily. jude PS: The ticker is a lie!

Tuesday: B: 1.5 C rice crispies, .5 C 1% milk, 1 tsp honey, .25C granola, coffee - 3 L: Cr of mushroom Soup, crab stuffed mushrooms D: dixie lee chicken - thigh only about 1/3 of the piece; 5 french fries, coleslaw, 1 tiny sliver DQ frozen cake S: 2 tbsp p.butter Water, water, water I think I totalled just under 1500 cals for the day - the most cals I have eaten in months!!! (but it was my birthday- family all here - organized dinner for me) jude PS: The ticker is a lie!

Monday B: coffee with cream Water, Water Blunch: 1.5 C rice crispies with 1/4 C granola, 1/2 C 1% milk, 1 tsp honey Water, Water, D: 4 oz boneless chicken thigh, 1/2 C cottage cheese Water, Water Coffee with cream jude PS: The ticker is a lie!

Have a great day tomorrow Mandi and will be thinking about you and sending good vibes on tues! I am thinking about no more than .5 cc when I go in next week. How about you? I have a 4cc band and I got 1 cc in the first fill. jude PS: The ticker is a smaller lie!

B: coffee with cream Brunch: 1 C corn flakes with 1/2 C 1% milk and 1 tsp honey D: small green salad with ranch dressing; 3 oz. boneless skinless chicken breast with mushrooms and some melted cheese; 1 tblsp of mashed potato with 1/2 tsp butter; 1/4 C cooked carrots 4 bottles Water, evening snack - coffee with cream PS: The ticker is a little smaller lie!

Thanks Cloe - that was cool!!! PS: The ticker is a smaller lie!

Way to go Cloe!!! Remarkable success! Mandi, I am so glad for you - getting to start your job early! Good Luck on Tues - it is a VERY good day -(my b'day). I am going for my fill on Mon 21st when Dr. C gets back from hols. I am going to "make a day of it". My mom is sore and weak and wobbly but still hanging in there - SHE IS ONE TOUGH OLD BIRD! GRINS! I am actully down a little on the scales although still up 5 lbs from the ticker! PS: The ticker is a lie!

Kim, Glad you are through it and it will get better every day!! jude PS: The ticker is a lie!

Thanks guys, I feel and I think we all feel - "safe" here!! I always know there will be encouragement!! I am just going to be waking her up in another 30 min then I can go to sleep for a couple of hours. jude PS: The ticker is a lie!

White Rabbit, sending hugs!!!!!! I also PM'd you! jude PS: The ticker is a lie!

First of all - Good Luck Mandi on your trip to Toronto - I know it will be expensive but hey you get to see Doc C again!!!! I think most of you know that I am primary care-giver for my terminally ill mom. Well this am I heard this bang, bang, bang and then WHOMP! I went running from the bathroom and she had passed out on the hardwood floor just at the top of the stairs. An ambulance took her to emerg and she has some cracked ribs, a split lower lip, a split upper lip, and a gash on her chin that required 5 stitches. Because she was unconscious for a few minutes and has concussion I have to wake her every 2 hours tonight. What a day! At least today she is speaking to me and remembers who I am! I got a second fill appt for Mon Aug 21 at the clinic - I think Marie is going to try to do it again but said I could wait and talk with Dr. C if I wanted to. I am still up 6 1/2 lbs. In Marie's reply to my email - I had told her I increased my calorie in take at her behest - she told me to adjust it lower again and not to worry too much about the gain - just get another fill. So that is what I am doing. It involves another day of travelling all day by train to and from Toronto and the hardest part is to get care coverage for my mom but I will do it!! The rest of you are doing great and keep up the good work! I am following the challenge! jude PS: The ticker is a lie!

Vinesqueen, Thanks for correct information! Many people do not understand the Cushing's problem. Even people with Cushing's like you and I have a lot of trouble understanding it. It is a very defiant and strange condition with a will of it's own. Information for the understanding of others: Cortisol is a steroid produced by the body. When there is too much cortisol it is like you are on double/ triple doses of prednisone and if you know anyone who has taken that and what it has done to their weight and the appearance of their body - then you will have some idea of what cortisol does to Cushing's people. It also has tremendous effects on connective tissue, muscles, emotions and spirit!!!!!!!! jude PS: the ticker is a lie!

Loriey, Benefibe works great - no taste - mix 1-2 tblsp in a glass of juice or Water or add to oatmeal or cream of wheat - works quite quickly too! usually a few hours! I have IBS too! My doc told me NO WHEAT products - so if I eat a bowl of shreddies for breakfast that usually does the trick too! jude PS: the ticker is a lie!

Chloe, I have no great insight or advice other than to say - hang in there! Each day is a NEW day and NEW chance to do a NEW thing! I honestly think this journey has got to be ONE day at a time! You have proved by past actions that you are an extrememly strong person! This battle will be won also! You can do it! jude PS: The ticker is a lie!