Guest guest Posted August 26, 2001 Report Share Posted August 26, 2001 In a message dated 8/26/01 5:14:30 PM Pacific Daylight Time, LiliFrench@... writes: > a section of a Hershey > bar instead of the whole bar, for example). Isn't it funny how that totally takes care of the urge for chocolate? I've had one nibble on a choc. bar and I've had no interest in it since...I LOVE IT!!! ~~* AJ *~~ Age 37 5'8'' Post op 7/24/01 Open BPD/DS self pay - Dr Baltasar -Alcoy Spain 07/24/01 BMI 64 415.1 08/06/01 BMI 59 390.2 -24.9 lbs! -10.75 inches 08/16/01 BMI 58 387.0 -27.9 lbs! -11.25 inches 08/24/01 BMI 58 386.5 -28.7 lbs! -15.5 inches My personal website: www.WLS4AJ@... Check out the Bellingham Support Group at WWW.WLSBellingham.homestead.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2001 Report Share Posted August 26, 2001 Hello, i =) I chose the DS specifically because I wanted to be able to have an occasional sweet.. I was a total chocoholic preop, & the idea of never eating a good piece of chocolate again was too much. Then postop, my tastes have changed- I no longer crave chocolate, rarely want cookies or candy.. I prefer fruits or limeaide now. Even when I do eat something sweet, I eat much less than before (a section of a Hershey bar instead of the whole bar, for example). Apparently not all people have this change in tastes, though.. but for me, I love that if I want it, I can have it without worry of dumping. However, it is your choice, ultimately. If you are a sugar fiend, the RnY might be a better choice.. but I decided to take my chances because there were too many things about the RnY that I didn't like. Good luck in your journey, & keep asking questions! Hugs, Liane > I am i and I am in the research stage. > > One question I have come up with is: Since you can tolerate sweets in your > post op surgery state are you concerned with sabotaging the surgery results > by out of control sugar eating? Would this be a reason to choose rny > instead? > > Thanks in advance > > i Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 In a message dated 6/12/03 9:45:04 AM Eastern Daylight Time, cunning100@... writes: > Cunningham > > Hi Chris! Welcome to the Grads! How is the Theater these days? Still hooked on Curves? I am heading there as soon as I sign off...lol! See ya. Louise Atkinson Open RNY- May 1st, 2001 Dr. Goldfarb St Hospital, Pa Abdominoplasty,hernia repair 7/23/02 275/168 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 Welcome Chris. Lori Owen - Denton, Texas SRVG 7/16/01 Dr. Ritter/Dr. Bryce 479/335/??? On Thu, 12 Jun 2003 15:05:45 -0000 " " writes: > > My name is Cunningham. I had my LAP RNY on June 5, 2002. I > always remember being the " big girl " in my life and had tried every > > diet and diet aid known to man before my surgery. Nutra system, > Craig, Weight Watchers, merida, phen-pen, OA, you name it I > had > been there. I am 5'4 " and the week before my surgery weighted in at > > 261, Im sure after my week of " last meals " that amount was higher, > but use 261 as my offical start weight. I was a size 24 in womans > clothes. I was on 5 different blood pressure meds and still my BP > was running high. I was also diagnosed as needing a hip replacement > > due to a childhood injury in the growth plate of my left thigh.Two > years ago I was walking with a cane. Even though I was always on the > > large size,I constantly tried to diet, worked out in a circuit > training gym 3 times a week and had a good self image (I thought) > was > very successful at work was married to a man that loved me although > > my weight was always an issue in our relationship. > > Having hip replacement surgery at at close to 300 pounds scared the > > life out of me. I had several friends that had RNY surgery and saw > > how successful they were and decided that I now had the radical > reason to take control of my life. > > This past year has been nothing but amazing! I have lost 103 > pounds, > and now weigh 158 pounds, I went from a size 24W in womans clothes > to > a size 6. I am totally off all BP meds and now have LOW BP without > > any meds. I still need hip replacement surgery, but I am no longer > > using a cane to get around, and the surgeon that will do the > replacement told me I should " Breeze right through recovery since I > > was so little " I really did look behind me to see who he was > talking > to. > > I have gotten very involved in several different WLS support groups > here in Philadelphia and the burbs. I feel as if I can't keep my > success a secret and find myself talking to most anyone who will > listen. I have also started acting in a local dinner theater group > > on the weekends, something I would have never even dreamed of doing > > when I was size 24. > > So here I am, hoping to make even more new friends on this wonderful > > journey. I hope I have lots to share with all of you, and that I > can > learn from you " old timers " ... so in advance, thanks for being there > > and I look forward to getting to know you all. > > Thanks for the support > > Cunningham > LAP RNY 6.5.02 > Dr Noel > Hospital University of Pennsylvania > start 261/ current 158 > start size 24w/ current size 6 > > > > > Homepage: http://groups.yahoo.com/group/Graduate-OSSG > > Unsubscribe: mailto:Graduate-OSSG-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 Welcome to the group Chris. Congrats on your great success. Jeanne in WI Age 39 - Dr. T. Chua Open RNY - 5/21/02 314/208/199 or less djgraves@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2004 Report Share Posted May 25, 2004 Hello , Don't worry the death rate is worse staying heavy then it is to have the surgery. You will be ok. I am almost 16mon post op and i did great , you will be just fine. If you have any Q's just e-mail me ok. Good Luck, Dayte sherri edling wrote: Hi , welcome to the group!!!! If you have any questions, please feel free to email me privately @: yorkiegal2003@... Hello My name is and I have joined the group today, because I will be having the surgery next month, not sure what day, but I go for my pych evaluation on June 15th and the nurse said I can have it that week or the week after so I am in dire straight to talk to people who have had the surgery. I don't have much time to get on messenger so if anyone could semail me I would greatly appreciate it. My main concern is what is the statics of success, meaning what is the death rate and the success rate. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2004 Report Share Posted June 28, 2004 Hi Daisy: I am 450. I am having my surgery July7, 2004. Open RNY I too have problems bathing and going to the bathroom. I clean as best as I can and I do have my Doctor setting up to have a visiting nurse come to my home 3 to 4 times a week after my surgery to help me bath to help prevent infection. I too live alone. It is so very frustrating not to be able to do a simple task as bath or wipe yourself. I was a woman who bathe 2 to 3 times a day before I got to big. I cry endlessly! Ask your doctor. Marlene Surgery date: July7 450 Goal: 150 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2004 Report Share Posted June 28, 2004 as for me, i had my lap surgery 6-23-2004, i am 312 lbs.. at first, if i had to do # 2, i would take a shower to clean myself to keep myself clean and also just to keep my incisions clean. But that was only because i was sore, i am now able to clean mysel reguraly 5 days afterward.. you just have to get through the soar ness... amy Daisy Hayward wrote: Hello I am new to the group but have been doing research on gastric bypass for years for myself. I have a date, July 30 and hope to have everything go smoothly. I am scheduled for a lap RNY and I am currently at 380 pounds, 5 foot 7 inches tall, so I am looking forward to where I might be a year from now. I am glad to find a support forum that seems so welcoming and friendly. I hope I won't be out of line but could I ask a very personal question, and if it is too personal feel free to respond in e-mail if you can or wish. And I will understand if no one feels free to respond. I just thought that in a more anonymous media like this it might be a way to ask this. I am a single woman with no family nearby or friends who can be out of work to care for me after surgery. With a lap surgery will I have many problems at home by myself. Also, (here goes) how does one take care of personal hygiene when size makes it a strain sometimes even with out surgical tenderness and such to worry about. I mean things like going to the bathroom, bathing completely and such? I apologize if this is too indelicate for this list, and hope you understand. Thank you, Celeste --------------------------------- Do you Yahoo!? New and Improved Yahoo! Mail - Send 10MB messages! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2005 Report Share Posted March 21, 2005 > > > I live in arizona am also 48 im having just > lower only i hope. Who is your OS Why was it changed > form lower only to also top??? When I was a child I had one of my teeth pulled because of crowding. My mom, a single parent, couldn't afford braces. I spent many an evening with a popsicle stick pushing my teeth around to get my teeth out from behind each other. The loss of that tooth caused all of my teeth to drift to the right. I completely lost midline. My midline was off by almost a whole tooth. The plan was to open up that space and put in an inmplant. Unfortunately, (and I think it's a personality trait) my teeth are *very* stubborn. In spite of some very agressive pushing, shoving, springs etc, we got exactly 1 mm of movement in 9 months. So, the alternative is to move the whole jaw part.... ick. Still thinking on this one. Seems like a *huge* step. My ortho is Dr. Joe . I like him a lot. My oral surgeon's name escapes me at the moment. Before I had my braces put on, I did a consult with him. I was referred to him by my ortho. I like him as well. As soon as I find his name, I'll post. LOL. I just call it a senior moment. All in all, I'm thrilled with the progress I've made with just the braces. It's amazing. But I figure I'm in for a penny, might as well be for the whole thing, right? No sense in doing it unless it's done right. Thanks so much. I'm sure this will keep me from feeling so alone! Stephany Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2005 Report Share Posted March 21, 2005 I agree DO IT RIGHT . I also needed braces when i was young my mom a single parent could not afford braces either. Both my kids have braces the whole family has them except my wife she has great teeth. Anyways i will see ya on the board i am guessing my surgery will be like nov dec Merry Xmas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2005 Report Share Posted April 29, 2005 Hello, Laraine - welcome to the group: I've been a member for just a few days now and the people here are GREAT. I joined for the same reason: to find out more about this type of jaw surgery. I'm in my forties and have seriously contemplated having this surgery on more than one occasion. I hope you get lots of answers to your questions. Good luck! / Diane-- In orthognathicsurgerysupport , <lareiney@y...> wrote: > Hi! Laraine here. I just joined the group hoping to know more about lower jaw surgery. My lower jaw is shifted to one side. I thinking about going for surgery on my lower jaw to straighted it but have been hesitating for some time. I was wondering if the risks are worth it and what if I look worse than before. > Btw how long did you all take leave from yr work or do you quit yr job? > Anyone got experiences to share? > > Thanks a lot. > Regards > Laraine > > > > Yahoo! Mobile > - Download the latest ringtones, games, and more! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2005 Report Share Posted April 30, 2005 Laraine, friend, it may be that braces alone, or braces and surgery could help. Or not. The folks you need to be talking with about this are your general dentist, an orthodontist and an oral and maxillofacial surgeon, I think. Nobody here can begin to know the answers for you. There are people who have been helped by a variety of measures, ranging from splints to braces to surgery -- and who knows what else! Just go slowly, if you're not in pain, and find the professionals you can work with and respect, and see what they have to say about all this and your own particular situation. And no, most people do not quit their jobs to have surgery. The recovery takes somewhere between a week or two and four to six weeks, usually. But there are a lot of variables built in there. If you are doing it primarily for cosmetic effects, be particularly cautious. Until our temporomandibular joints go awry and start giving us grief, we never (or at least seldom) realize how serious they can be. Best, Cammie > Hi! Laraine here. I just joined the group hoping to know more about lower jaw surgery. My lower jaw is shifted to one side. I thinking about going for surgery on my lower jaw to straighted it but have been hesitating for some time. I was wondering if the risks are worth it and what if I look worse than before. > Btw how long did you all take leave from yr work or do you quit yr job? > Anyone got experiences to share? > > Thanks a lot. > Regards > Laraine > > > > Yahoo! Mobile > - Download the latest ringtones, games, and more! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2005 Report Share Posted April 30, 2005 > > Hi! Laraine here. I just joined the group hoping to know more about > lower jaw surgery. My lower jaw is shifted to one side. I thinking > about going for surgery on my lower jaw to straighted it but have > been hesitating for some time. I was wondering if the risks are worth > it and what if I look worse than before. > > Btw how long did you all take leave from yr work or do you quit yr > job? > > Anyone got experiences to share? > > > > Thanks a lot. HI, I had my lower jaw surgery on Tues this week, I guess that's 4 days ago. I am doing very well. So far I would do this all over again. The biggest issue is trying to figure out what to eat. So many things sound good but once you start trying to eat them not so good. My favorite thing right now is chocolate milk. I am adding powdermilk for more calories. My face is pretty sollen, not much brusing. I think the worst part was the sore throat, that has gone now so that's good. All and all it's all going just as I thought it would. I'm not very pretty right now but I will be LOL Good luck any question feel free to ask Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2006 Report Share Posted May 25, 2006 Im coming back! School is done and as long as doesnt have a game I'll be there....well except June...I will be in Indiana visiting my home town! > > Hi everyone > Sorry I haven't read a message since a week ago, just wanted to wish all well with their journey where ever they are in it. I had a wonderful time in Reno, I have never had a message and my friend paid for us both one. WOW WOW WOW How nice it was. I was a little nervous I had a young stud guy who gave me mine, and at first it felt weird when he called my name, but once the massage started it was wonderful. We didn't pick who gave the massages we just got who was ready for us at our time. My friend got a lady, she wanted to trade. I made it to support group finally Monday after missing 3 of them and NO Kerre, NO Barbara, NO Gordy, NO , I missed you all. I am going to be going again each month, hope you all will start coming again, I miss you guys. Pam Marsh I know you're back to work and schedules are hard, I would love to come see you. I have NO weekends open, I'm off to Shingletown this weekend, and something going on until July. I can come on a Tuesday > or Thursday evening but it would be late I don't get off work until 6:30 pm. Or better yet since I don't have things booked in July if you have a Sat or Sun free I'd like to come take you to lunch and meet you. Here's my email dsjordon@... if you would like this email me and give a day and time that works for you. Once it's on the books I keep my dates, if not things get so busy and changed. Every take care. Donna J. > > > Donna Jordon > > DSJordon@... > > --------------------------------- > Ring'em or ping'em. Make PC-to-phone calls as low as 1¢/min with Yahoo! Messenger with Voice. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2008 Report Share Posted August 31, 2008 Terri, oh that is terrible news about your dr. I hope you can find a new one soon. If your having a flare you should be under treatment. you are in my prayes Terri.. many hugs and blessings and a pain free day. Hey Guys,Thought I would share what has been happening lately and I am prettydisappointed. My rheumatologist was writing my orders for cytoxan andeverything was well. My neuro doesn't do any infusions except for MS. Well, the rheumy, who also did pain management has had his medicallicense suspended temporarily. He has a hearing scheduled in Septemberbut my fear is that he will either have a long suspension or he willloose his license. He is a wonderful person who was the only one tocorrespond with s Hopkins and try to figure something out.Well, I just had an appointment with the new rheumy, whom I like verymuch. But, she doesn't use the cytoxan much due to the future risks ofthings such as bladder cancer. So, I am back to square one with the newdoc. Of course, the questions came up about all of my problems being inmy head, or emotional, etc. She is rerunning all of the blood workagain and I just had the C, T and L spine done on MRI. It has beenyears since this has been done but I won't have results for a couple ofweeks.You can guess since I have not had treatment since mid-July that mysymptoms are now starting to return. I thank God for the reprieve, butit has been an unbelievable set back. Can you believe it?I have finally accepted the circumstances so I have finished my pityparty and felt like opening up.I wish everyone on the Gulf Coast remains out of harms way and I ampraying you will be able to return to your homes soon.Terri G. Get the MapQuest Toolbar. Directions, Traffic, Gas Prices More! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2008 Report Share Posted September 1, 2008 , Thank you very much for the prayers. I can't believe this is happening. Terri G. > > Terri, > > oh that is terrible news about your dr. I hope you can find a new one soon. If your having a flare you should be under treatment. > you are in my prayes Terri.. > many hugs and blessings and a pain free day. > > > > > In a message dated 08/31/08 18:53:36 Eastern Daylight Time, mosaicgirl1@... writes: > > Hey Guys, > > Thought I would share what has been happening lately and I am pretty > disappointed. My rheumatologist was writing my orders for cytoxan and > everything was well. My neuro doesn't do any infusions except for MS. > Well, the rheumy, who also did pain management has had his medical > license suspended temporarily. He has a hearing scheduled in September > but my fear is that he will either have a long suspension or he will > loose his license. He is a wonderful person who was the only one to > correspond with s Hopkins and try to figure something out. > > Well, I just had an appointment with the new rheumy, whom I like very > much. But, she doesn't use the cytoxan much due to the future risks of > things such as bladder cancer. So, I am back to square one with the new > doc. Of course, the questions came up about all of my problems being in > my head, or emotional, etc. She is rerunning all of the blood work > again and I just had the C, T and L spine done on MRI. It has been > years since this has been done but I won't have results for a couple of > weeks. > > You can guess since I have not had treatment since mid-July that my > symptoms are now starting to return. I thank God for the reprieve, but > it has been an unbelievable set back. Can you believe it? > > I have finally accepted the circumstances so I have finished my pity > party and felt like opening up. > > I wish everyone on the Gulf Coast remains out of harms way and I am > praying you will be able to return to your homes soon. > > Terri G. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2008 Report Share Posted September 1, 2008 OMG! I am so sorry this is happening to you. It's so hard to get the right combination of doctors who will listen to you and prescribe what your body needs. I pray quick results for you.Much LoveNaa Koshie "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver Hello Hey Guys, Thought I would share what has been happening lately and I am pretty disappointed. My rheumatologist was writing my orders for cytoxan and everything was well. My neuro doesn't do any infusions except for MS. Well, the rheumy, who also did pain management has had his medical license suspended temporarily. He has a hearing scheduled in September but my fear is that he will either have a long suspension or he will loose his license. He is a wonderful person who was the only one to correspond with s Hopkins and try to figure something out. Well, I just had an appointment with the new rheumy, whom I like very much. But, she doesn't use the cytoxan much due to the future risks of things such as bladder cancer. So, I am back to square one with the new doc. Of course, the questions came up about all of my problems being in my head, or emotional, etc. She is rerunning all of the blood work again and I just had the C, T and L spine done on MRI. It has been years since this has been done but I won't have results for a couple of weeks. You can guess since I have not had treatment since mid-July that my symptoms are now starting to return. I thank God for the reprieve, but it has been an unbelievable set back. Can you believe it? I have finally accepted the circumstances so I have finished my pity party and felt like opening up. I wish everyone on the Gulf Coast remains out of harms way and I am praying you will be able to return to your homes soon. Terri G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2008 Report Share Posted September 2, 2008 Terri, I am so sorry this is happeneing. Just when it seems we are getting somewhere with our doctors or our medical treatment....Please take care of yourself, and keep us updated. Thank you for filling us in. You are in my thoughts and prayers, Christy Subject: HelloTo: Neurosarcoidosis Date: Sunday, August 31, 2008, 5:53 PM Hey Guys,Thought I would share what has been happening lately and I am prettydisappointed. My rheumatologist was writing my orders for cytoxan andeverything was well. My neuro doesn't do any infusions except for MS. Well, the rheumy, who also did pain management has had his medicallicense suspended temporarily. He has a hearing scheduled in Septemberbut my fear is that he will either have a long suspension or he willloose his license. He is a wonderful person who was the only one tocorrespond with s Hopkins and try to figure something out.Well, I just had an appointment with the new rheumy, whom I like verymuch. But, she doesn't use the cytoxan much due to the future risks ofthings such as bladder cancer. So, I am back to square one with the newdoc. Of course, the questions came up about all of my problems being inmy head, or emotional, etc. She is rerunning all of the blood workagain and I just had the C, T and L spine done on MRI. It has beenyears since this has been done but I won't have results for a couple ofweeks.You can guess since I have not had treatment since mid-July that mysymptoms are now starting to return. I thank God for the reprieve, butit has been an unbelievable set back. Can you believe it?I have finally accepted the circumstances so I have finished my pityparty and felt like opening up.I wish everyone on the Gulf Coast remains out of harms way and I ampraying you will be able to return to your homes soon.Terri G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2008 Report Share Posted September 3, 2008 ; Thanks for your concern. I appreciate it. I am hoping to hear about my MRI's by Monday but we will see. I did get some good news last night thought. My other son Jeff, and his wife , are going to have a baby too. So that means and Angie will be in February and Jeff and will be in April. Two little cousins growing up together. It gives me something to look forward to and strive for. I appreciate all who have commented. I felt so guilty about feeling good that I didn't want to say anything that my tteatment was in jeopardy. But thank you all and I know you are always their for me. Terri G. > > From: mosaicgirl1 mosaicgirl1@... > Subject: Hello > To: Neurosarcoidosis > Date: Sunday, August 31, 2008, 5:53 PM > > > > > > > > Hey Guys, > > Thought I would share what has been happening lately and I am pretty > disappointed. My rheumatologist was writing my orders for cytoxan and > everything was well. My neuro doesn't do any infusions except for MS. > Well, the rheumy, who also did pain management has had his medical > license suspended temporarily. He has a hearing scheduled in September > but my fear is that he will either have a long suspension or he will > loose his license. He is a wonderful person who was the only one to > correspond with s Hopkins and try to figure something out. > > Well, I just had an appointment with the new rheumy, whom I like very > much. But, she doesn't use the cytoxan much due to the future risks of > things such as bladder cancer. So, I am back to square one with the new > doc. Of course, the questions came up about all of my problems being in > my head, or emotional, etc. She is rerunning all of the blood work > again and I just had the C, T and L spine done on MRI. It has been > years since this has been done but I won't have results for a couple of > weeks. > > You can guess since I have not had treatment since mid-July that my > symptoms are now starting to return. I thank God for the reprieve, but > it has been an unbelievable set back. Can you believe it? > > I have finally accepted the circumstances so I have finished my pity > party and felt like opening up. > > I wish everyone on the Gulf Coast remains out of harms way and I am > praying you will be able to return to your homes soon. > > Terri G. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2008 Report Share Posted October 14, 2008 Connie, it's good to see you able to post. You have got a challenge of a battle with the s-monster. Kindof makes ya wanna scream-- doesn't it. It sounds like neuro has a hare tickling his brain-- or something like that. You all get the picture anyhow... Thanks for recommending our site-- we do try hard to keep the info flowing. Know you are missed, and I'm glad you're able to use a working computer for a few days. Hugs, Tracie NS Co-ownr/moderator Hello Hi Everyone, I miss being able to write you all and read your emails too, but I don't have a computer that will work good enough to let me read more than one or two emails and it takes me forever to do that. Maybe one day I will have a computer that works like it should. (I am thankful for the little bit I have). I think about you all alot and have recommended the site to two young ladies that were facing the start of the sarcoidosis journey. I told them they would find the help they needed from you all. Things have been a little bit messed up lately. My heart failure had been quiet for the most part since they put in the CHF InSyncIII Pacer 2 years ago, then all of a sudden about 4 months ago I started swelling up again and having breathing problems, blah, blah, blah. Then about 6 weeks ago my arms starting going numb and they tell me my neck is all messed up. They still haven't figured out what they are going to do about my neck. Now my ankles are starting, I was trying to figure out what was going on. For once I almost hope it is my sarc, I have read about AVN and I definitely don't want anything to do with that. I am at very high risk for that steroids, hyperlipedemia, etc and my ankle has gone nuts. I don't think everything that happens to me is sarc, but I have been biopsied confirmed more than once. I know I have cardiac sarc, joint sarc, bronchial sarc, lung sarc, sarc in my mouth, etc. Why do doctors look at me and say "Oh it probably has nothing to do with the sarc" - they did this recently with the neck issue. I know I have developed osteoporosis, and everything else just about that steroids can cause. But I also know that the last x-ray of my knee looked like it had peas behind the joint. Sorry, just venting. It really upsets me that I may loose the ability to play the piano because of the way my left arm in particular is malfunctioning. Please keep me in your thoughts, I know I am not going through as much as a lot of your are facing. Gripe session over. I am hunting a new cardiologist and I am thinking seriously about adding a new neurologist to that list. The neurologist I thought the world of in the practice went to Boston and I am not impressed with the partner. The other day he got a smart look on his face and asked me sarcastically why I declined to have an MRI. Note: He had my chart in his hand. I looked at him and reminded him that I had a 3 lead pacemaker. My cardiologist has never said (or helped) me very much, hands me an insurance paper to take to the front desk to sign out- the diagnosis on the paperwork "cardiomyopathy" , he has never discussed this with me? I forgot gripe session over. Sorry....... ......... ......... Take care all, and thank you so much for all you do and for being there with all your help, wisdom and compassion. Connie (Florida Born - Georgia Peace at Heart) For the next couple of nights I will have access to an actual, good working computer. I am out of town until Friday afternoon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2008 Report Share Posted October 15, 2008 Thanks so much for writing Tracie, I am so glad to hear from you. I hate so much I don't have a way to post more often. I can't get faster internet where I am without alot of expense I can't afford right now. I do concur with the screaming. There is so much I want and need to do and it is getting harder and harder, as I know it is for all of you, and I can not stand the thought that I could lose the ability to play the piano. But hey, if it happens, i'll figure out how to play one handed if I have too. Again, forgive me for my sporadic emailing, and know you all are in my thoughts more than you will ever know. I'll be reading away, I only have the computer through tomorrow night. Take Care.....Connie Subject: Re: HelloTo: Neurosarcoidosis Date: Tuesday, October 14, 2008, 10:22 PM Connie, it's good to see you able to post. You have got a challenge of a battle with the s-monster. Kindof makes ya wanna scream-- doesn't it. It sounds like neuro has a hare tickling his brain-- or something like that. You all get the picture anyhow... Thanks for recommending our site-- we do try hard to keep the info flowing. Know you are missed, and I'm glad you're able to use a working computer for a few days. Hugs, Tracie NS Co-ownr/moderator Hello Hi Everyone, I miss being able to write you all and read your emails too, but I don't have a computer that will work good enough to let me read more than one or two emails and it takes me forever to do that. Maybe one day I will have a computer that works like it should. (I am thankful for the little bit I have). I think about you all alot and have recommended the site to two young ladies that were facing the start of the sarcoidosis journey. I told them they would find the help they needed from you all. Things have been a little bit messed up lately. My heart failure had been quiet for the most part since they put in the CHF InSyncIII Pacer 2 years ago, then all of a sudden about 4 months ago I started swelling up again and having breathing problems, blah, blah, blah. Then about 6 weeks ago my arms starting going numb and they tell me my neck is all messed up. They still haven't figured out what they are going to do about my neck. Now my ankles are starting, I was trying to figure out what was going on. For once I almost hope it is my sarc, I have read about AVN and I definitely don't want anything to do with that. I am at very high risk for that steroids, hyperlipedemia, etc and my ankle has gone nuts. I don't think everything that happens to me is sarc, but I have been biopsied confirmed more than once. I know I have cardiac sarc, joint sarc, bronchial sarc, lung sarc, sarc in my mouth, etc. Why do doctors look at me and say "Oh it probably has nothing to do with the sarc" - they did this recently with the neck issue. I know I have developed osteoporosis, and everything else just about that steroids can cause. But I also know that the last x-ray of my knee looked like it had peas behind the joint. Sorry, just venting. It really upsets me that I may loose the ability to play the piano because of the way my left arm in particular is malfunctioning. Please keep me in your thoughts, I know I am not going through as much as a lot of your are facing. Gripe session over. I am hunting a new cardiologist and I am thinking seriously about adding a new neurologist to that list. The neurologist I thought the world of in the practice went to Boston and I am not impressed with the partner. The other day he got a smart look on his face and asked me sarcastically why I declined to have an MRI. Note: He had my chart in his hand. I looked at him and reminded him that I had a 3 lead pacemaker. My cardiologist has never said (or helped) me very much, hands me an insurance paper to take to the front desk to sign out- the diagnosis on the paperwork "cardiomyopathy" , he has never discussed this with me? I forgot gripe session over. Sorry....... ......... ......... Take care all, and thank you so much for all you do and for being there with all your help, wisdom and compassion. Connie (Florida Born - Georgia Peace at Heart) For the next couple of nights I will have access to an actual, good working computer. I am out of town until Friday afternoon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2009 Report Share Posted February 21, 2009 May the Lord bless you and keep you,May the Lord make his face to shine uponYou,And be gracious to you;May the Lord lift up his favor upon you and give you his peace.(Numbers 6:24-26) Hi Mona, I am sorry you have been through this, Saracoid is not a nice disease, but we try to handle it with medications, etc. Others have had the same infection as you, so I will let them respond to you on that. It's hard to say how sick you can get, it's difference for everyone we are all dealing with different levels of this disease. For me it's all over, my lungs, under control with Plaqunil, Brain, spine, and on Remicade for that, and that is really helping. I have lesions all over my body, it seems to like my face, some days I feel like a school girl:) guess that's a young feeling. But like I said the most important thing is to get good doctors, and find a treatment that works for you. I have been through a few treatments, that worked for awhile then they had to change it. I have had Sarcoidosis since 1994, and although not an easy road, I have made it by adjusting my life style, and adjusting meds, and adjusting the knowledge people have about this disease. I live one day at a time, that's all I can do, and that's all we are given, so don't worry about tomorrow, it's not even here yet:) Blessings to you, Marla as I said I'm new at this. I was told in 2006 i had sarcoidosis. At that time my doctor didn't seem to worried about it. Last year he told me i was in remission with it,basically gone. well a few months ago it started back shortness of breath etc. i had another Bio.. of the lungs and he found an infection in there staff (mrsa). I needed up at the ER and put in the hospital on IV antibiotics three different ones. i was in there two days and sent home on three antibiotics. this is awful. On Monday i go back to my lung doctor and i just wonder what next. it really scares me alittle. I don't even know if i can trust my doctor now. can anyone help on this. how sick can you get with this disease? Mona Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2009 Report Share Posted February 21, 2009 HOW SICK CAN YOU GET FROM THIS DISEASE? My mother in law passed away on christmas eve from it. She contracted cryptoccocus while in hospital and never recovered she was only 60years old So yeah you can get pretty sick. Look after yourself and dont be afraid to ask questions after all its your body. cheers Subject: helloTo: neurosarcoidosis Received: Saturday, 21 February, 2009, 5:05 PM as I said I'm new at this. I was told in 2006 i had sarcoidosis. At that time my doctor didn't seem to worried about it. Last year he told me i was in remission with it,basically gone. well a few months ago it started back shortness of breath etc. i had another Bio.. of the lungs and he found an infection in there staff (mrsa). I needed up at the ER and put in the hospital on IV antibiotics three different ones. i was in there two days and sent home on three antibiotics. this is awful. On Monday i go back to my lung doctor and i just wonder what next. it really scares me alittle. I don't even know if i can trust my doctor now. can anyone help on this. how sick can you get with this disease? Mona Stay connected to the people that matter most with a smarter inbox. Take a look. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2009 Report Share Posted February 21, 2009 Thanks for writing me back i can really use the support. as Ive said I'm scared. my lung doc. told me I had an infection in my lungs mrsa but send me home on meds. to see if they would work. that next weekend i Was in the ER then put in the hospital for two days on some really strong meds. I am now home sick alots because of the strong meds. I see my lung doctor on Monday but who knows what he will want to do next to treat the sarcoid. see Ive had it since 2006 but the doctor said i didn't need the pred. or anything so all this time gone bad i wonder how bad it is.. I'm going to request another down town, see we are retired military so we use the base, but i need someone that can help and now, don't you think? I hope things get better for you Mona as I said I'm new at this. I was told in 2006 i had sarcoidosis. At that time my doctor didn't seem to worried about it. Last year he told me i was in remission with it,basically gone. well a few months ago it started back shortness of breath etc. i had another Bio.. of the lungs and he found an infection in there staff (mrsa). I needed up at the ER and put in the hospital on IV antibiotics three different ones. i was in there two days and sent home on three antibiotics. this is awful. On Monday i go back to my lung doctor and i just wonder what next. it really scares me alittle. I don't even know if i can trust my doctor now. can anyone help on this. how sick can you get with this disease? Mona Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2009 Report Share Posted September 4, 2009 Connie, Thanks so much for your kindness and prayers. Thank you also for the wonderful support. Terri G. > > Quote Link to comment Share on other sites More sharing options...
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