Guest guest Posted December 22, 2003 Report Share Posted December 22, 2003 Hi , You are exactly right about the grieving process being applicable when you're told you have a chronic illness. I'm a qualified nurse, and part of my studies involved examining the effects of chronic illness on the family (when a child is diagnosed). You move through all the stages that you describe, but you can also go backwards and forwards at various times. Sometimes, you can think you've gone through the process and come out the other side, and something happens to send you back again. I also have CP, and realise how important it is to have the support of other people who understand exactly what you're going through. 'Talking' about how you're feeling is really important. I have had a TP, and found the support of others was invaluable. Take care everyone, and have a good Christmas. Sue. > Message date : Dec 22 2003, 04:00 PM > From : > To : pancreatitis > Copy to : > Subject : Laurie > Please Please dont do anything rash. I know exactly how you feel. > Abadoned by the only physician you feel can help you. You need to > get in touch with that gi doc and tell him how you feel. He must > have an email address if anything. Just getting it off your chest > will make you feel a lot better, not to mention letting him know > where you stand. There are always other physicians and not going > against where he stands is not what a second opinion is all about. > What area of the country do you live in? You need to talk with > someone about this depression. When I found out the > sphincteroplasty had not worked, I was deeply depressed, blamed my > self, felt that death was better then this life. I expressed my > depression on this site as a venue to vent. I received so many > words of encouragement, kindness and support that it allowed me to > accept the depression, let it run its course. There have been a > ton of studies done on the mourning process, when we loose a loved > one. The phases of mourning. There have also been studies about > the phychological phases one goes through when a loved one, or ones > self, is pronounced with a terminal illness. I think those phases > are not just phychologically evident when death is involved. I > believe being diagnosed with a chronic illness, such as ours, we go > throough much of the same mental processes. Only difference is that > we rotate through at a different rate. We get our hopes up, we try > this and that, one test, stents, surgery, docs, antioxidents, > diets. All in the hope for relief. Maybe it is the process of > mourning the loss of hope. If I recall, the processees are, denial, > anger, depression, and acceptance. I dont believe accpetance is > giving up, I believe it is working on another hope. Its ok to be > mad and depressed,I think its a natural progression. But you > definitely need to talk with that doc though. Dont do anything rash > and know that you have a huge family here who love, support and > understand exactly how you feel. Please feel free to email me > personnaly if you want to talk. cdrrn@... > > With love > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Fliss, My husband would love for me to have the stent because he thinks it will " fix " me. He thinks like most men, if it is broke, break out the tools, take it part, re-build it and bamm it is fixed. Dr Lo does not want to do the stent until it is a last resort. He really, really wants to wait and see. I have to agree with him. I will do anything to stay out of the hospital! My 6 yr old son has real hard time if I am in the hospital, I spent 6 months in and out of the hospital when I was pregnant with little one that is now 3 yrs old. I t really affected him. I have had to even have my regular doc. explain to him many times that mommy will be okay. He knows I am sick, and I think he is afraid if I go back in the hospital I won't come out. So for right now Dr Lo and I agree to be ultra conservative and wait for a while. By the way, I am so happy you are doing better and that you have put the TP on hold for now. After all it's not like your pancreas is going anywhere. It will still be there when or if you decide to have it done. Simi Valley, CA To Hello , Are you trying to decide whther or not to have the stenting done or has the doctor definitely arranged it? He has a good reputation doesn't he, your specialist? I seem to remember hearing his name on a number of occasions. You probably feel you can trust him. Well , whatever you decide or whatever happens in this respect, I wish you every success and the best possible outcome. Best wishes, Fliss ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2004 Report Share Posted January 15, 2004 , I know you were responding to , but I wanted to butt in, no offense taken, I hope! I'm so glad that you are watching out for yourself.....what you described about your incision area, in laymen's terms, sounded absolutely YUCKY and could be a source of infection. It's horrendous that the nursing care hadn't done a better job of keeping that area clean. While I don't have any nursing experience, I do know about the importance of keeping the incision area free of infection. When I had to care for my own large and long abdominal incision back in the dark ages (28 years ago....LOL!), I would have to pour hydrogen peroxide all around the incision area twice each day to keep the area free of infection. Apparently they have more sophisticated methods/products these days, but whatever they have been doing, it sounds as though they weren't very thorough about it. So care for yourself well, . I understand your comment about keeping your husband home a bit longer.....it must be nice to have him there watching over you, and it is reassuring to have someone else there to help you if things aren't going exactly as you planned. Good luck with your appointment on Friday. You are still in my prayers for a speedy recovery. With hope and prayers, Heidi Heidi H. Griffeth South Carolina SC & SE Regional Rep. PAI, Intl. Note: All comments or advice are personal opinion only, and should not be substituted for consultation with a medical professional. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2004 Report Share Posted February 18, 2004 Glad you were able to go for a walk, I did for the first time on Friday...didn't realise how hilly the main street in town was. Put my daughter in the stroller and went down a huge hill, realising that that with that being the beginning of my walk, was going to be the last part of it also..so that meant, finishing the walk with a huge climb uphill *LOL*..I need to think it out a bit better in future *L* It put a strain on my wound..and I felt it in my back also, which I have been told that losing some abdominal muscle can be a resultant of. I live in northeast TN..I think I am about a 6 hour drive from you..or there abouts. I'm hoping to get the husband to take us to ton next year for our vacation. He doesn't like to travel, so I have to work him in gradually...such as " if you don't want to take us, I'll just take on my own, and will work something out if I have any trouble " *LOL*..that usually does the trick. I will be taking her to the local beach in Adelaide, it is only 15 minutes from my mum's place in Australia, I will also be taking her across the harbour by ferry to Manly in Australia (very beachy area)..and might fly up to the Gold Coast, Queensland for a couple of days to visit some cousins of mine..not sure about that yet. Then when we get back, will be stopping in LA for 3 days, so will take her to Disneyland for a couple of days, and then down to Seaworld in San Diego, or just go beaching it there..then fly back to Knoxville, and drive 1 1/2 hours northeast to home and the mountains...is only 4 months away. is the tube anywhere near your smiley face?..just tell people you've taken up smoking *LOL*..and will quit when your doctor tells you to. One thing I've found is that there can be delay upon delay when it comes to actually organising the surgery, but when everyone agrees (insurance, and doctors) that it is needed and all is approved, it can happen within a couple of days. I tried to get my first surgery here with the pancreatic duct and duodenum happening. Cancellation upon cancellation with the doctor, then when he finally was able to see me, insurance approved it pronto, and I was under the knife 3 days later..thought I'd have a couple of weeks to get myself organised at home, but it was ..we can do it on Thursday morning...and it was only Tuesday that I saw the doc. Same with my last surgery this year. The only one holding up the works was me. and that was just so I could spend a christmas with my daughter somewhat healthy since I'd missed so much with being in hospital the past 2 years with my constant and frequent attacks.. Have you worked out your flights with Angel Flight yet?..no need to feel guilty about using them, it is what they are there for, and they enjoy doing that for people, whether it be just for a consultation or surgery or post op checkups. A woman who was on one leg of the flight with me, she had had a double lung transplant a year before and every 3 months got an Angel flight from NC to Alabama (Birmingham Hospital?) for a checkup. Down one day, and back the next...another idea you could look into is, if you still don't want to use angel flight... Contact the Shriners. They also aide adults as well as children. I had no enough money at the time for the hotel stay after my surgery, an they offered to pay for my hotel for a couple of days. I wanted to pay the money back, but they wouldn't accept it, so my husband and I made some very large " donations " when I got back. That way we felt better about not " using them " ..and still paid our own way. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2004 Report Share Posted March 6, 2004 In a message dated 3/6/04 12:14:15 PM Eastern Standard Time, hhessgriffeth@... writes: > Meanwhile, time goes creeping by, and I am sitting in anticipation the > whole time, spending money I don't have, because I can't work, on medications I > have to have! > Hi Heidi, Yeah I know that feeling. It's not a pleasant place to be. I can only say " Keep the faith. " And, that I hope for the best for you and yours. Stress can work against you, be it lawyer evaluation or health, or just daily living. Please try to do something good for you. My Very Best Wishes, Poncho - GA PS I thought I had a good lawyer and he practices in the Atlanta area, Maybe he works in SC also, he specializes in SSDI cases, if you want his name and number, just email me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2004 Report Share Posted March 11, 2004 YOu better be careful; you certainly dont want to be the next copy editor for the Nat'l Enquirer....lol > I take a lot of drugs too, which is how I ended up saying it wrong. > What's funny is I read it like I wanted to say it. And I am EDITOR at > the local paper here. Now you know why I'm home on medical leave. > Could see the headlines I would write? Something like: > Marine Crops awarded for valor > Headless murderer sentenced to 5 years (about a murderer who cut off > heads of his victims) > Woman sold to Iraqi police (on a story about selling drugs to Iraqi > police) > Tammy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2004 Report Share Posted March 20, 2004 Hi , My name is Sue, and i had a total pancreatectomy in Uk in 2000. I didn't have the islet cell transplant, as it is not often done in the UK, so i am now diabetic and have insulin injections. My pain was relieved and my quality of life was much improved. I would certainly make the same decision again. As for the diabetes, i have found that mine has been reasonably stable. I have 4 injections of insulin each day (before meals, and at bedtime). For me, being diabetic is a much better option than all the pain i was having. I am a nurse, and i work 30 hours / week, which is shifts, including nights. Being diabetic does not stop me doing anything at all - just need to plan ahead a little more than before. If you need any more information, please don't hesitate to contact me. Best wishes, Sue > Message date : Mar 20 2004, 06:19 AM > From : " sasnfinny " > To : pancreatitis > Copy to : > Subject : RE: Partial pancretectomy > Hi Everyone, > > > This is and I am 16 years old. I had a partial pancretectomy > and I am now considering a full removal with the islet cell > transplant. Has anyone done this before and had enough islet > cells? Has your pain been relieved? Would you do it again? If I > didn't have enough islet cells, would I become a brittle diabetic or > any kind of diabetic? Would a transplant be a better option? Please > kindly reply as my parents and I are trying to make a decision. > This is the hardest decision because the first surgery failed. > Thank-you, > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2004 Report Share Posted March 20, 2004 Hello , I just want to wish your brother every success with his operation. I am so pleased for you that you will be able to be there at the same time. I'm sure it means a great deal to him as well as to you. You will both be very much in our thoughts. Good luck and very good wishes and thank you for keeping us posted. Fliss Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2005 Report Share Posted April 11, 2005 : I know you are happy that school is almost completed!! Way to Go!! Now you will be able to sit back and concentrate on getting your surgery over with. I am also in college and it has been quite difficult trying to focus on my studies while dealing with trying to get a surgery date. But at least now I know that the spaces the OD is creating is the final step before the surgical wires will be put on. Anyway, once again congrats on your Master's...You are my inspiration to finish up my school!! Talk to you soon, > > > > > > I just heard back from my new OS's office and my surgery date has > > been > > > set to June 6th. That's a load off my shoulders since I've been > > > agonizing over when the surgery will take place for months now. > Am > > > actually strangely excited! Any way, just wanted to share with all > > of > > > you. > > > > > > Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2005 Report Share Posted April 28, 2005 Hi Connie, Glad to hear that my pictures might help you! If you want, we can keep in touch as I go through my post-op recovery and everything, even though, as you have probably read from the site, everyone's recovery isdifferent. Anyway, thanks for your encouragement, and I'll make sure to post my post-op photos to give you an idea of what to expect! - > > Hay , > > I'm so excited for you that you will be getting your surgery, and I'm > really excited to see your results. The pictures of your bite are > very similar to my own, so your results will give me a good idea of > what to expect myself. Take good care of yourself and I'm sure you'll > do great. > > Connie Quote Link to comment Share on other sites More sharing options...
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