Guest guest Posted April 21, 2003 Report Share Posted April 21, 2003 Thank you Patty, I really missed you all as always. It was very nice to get away. I had a horrible Stills rash when I first got there and panicked, but it was gone by the morning. I felt okay, except for a fever. Otherwise, it was so nice to lie by the pool and just relax, nap when I could and just not think about work for once. The warm sun felt so good on my bones. I really would love to live in Florida in the near future. I always find such a difference when I visit there. Of course, we had the worse winter here possible, so that didn't help either. When I returned home, I had a visit with my rheumy and I told him that I was pretty much pain free down there, but I also noticed that when I am not working, it makes a HUGE difference in my life also. I never noticed this before. I don't know why, but I noticed it this time. I really hope to cut back my full work week in the near future. I just cannot do it anymore. It is truly so wonderful to "hear" you Patty. I have thought about you so much. I see that you moved, but have the same e-mail. Are you okay friend? I have been thinking about you so much and just know that. You are such a good, and dear friend. I love you sweetie. Love, Sue #2 -- Re: hello friends Well we have missed you miss ! But I cannot tell you how happy for you I am. I'm so glad that even with a bit to overcome you had a good time with the boys. I'm sure you all needed that. Glad to have you home, much love, Melt hello friends Hi Friends, I am back from vacation. It was really wonderful. I broke out with a serious Stills Rash two days after I was there, and my oldest son had strep throat, but we made it through, and it was truly a wonderful break away. I missed you all. I sincerely apologize about e-mail right now. I will have to delete a lot. I had over 500 messages. Please accept my apologies. I love you all so much and I am happy to be home. Love,Sue #2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2003 Report Share Posted April 21, 2003 it really does take a couple of years or so to find and notice the however small things that help or hinder with this disease. At first the whole thing is just BIG but as time progresses you find the areas and even times when it's the little tiny things or barely noticeable things that may make you better or worse. I reply for the newly diagnosed as well. Whenever I had a hospital stay because of Still's my doctor put me in private room to have the peace and rest that is so necessary for this disease to help control it. I know it doesn't cure, and some aren't able to find this but many do and this is what will keep you healthier as the years go on. To notice and try and live this way as much as life will let us. I'm doing just fine, thanks for your friendship. Melt hello friends Hi Friends, I am back from vacation. It was really wonderful. I broke out with a serious Stills Rash two days after I was there, and my oldest son had strep throat, but we made it through, and it was truly a wonderful break away. I missed you all. I sincerely apologize about e-mail right now. I will have to delete a lot. I had over 500 messages. Please accept my apologies. I love you all so much and I am happy to be home. Love,Sue #2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2003 Report Share Posted June 10, 2003 Patty : Thanks for the e-mail and the welcome. Yes, would appreciate some information /support , for liver transplants. My husband goes in tomorrow for MRI-, checking liver as they found something on the liver. Cliff has Hep C-- since 1996, but, Dr. told him he could have had for 20 years. We need some support and encouragement. Again thanks for the welcome. Any information will be helpful. Thanks, Gaynel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2003 Report Share Posted June 10, 2003 Jerry: Thanks for the welcome...... How are you doing now? How long has it been for you, since the transplant? Let us know how you are doing these days. And what we should expect, before the transplant. Thanks Gaynel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2003 Report Share Posted June 10, 2003 Gaynel...I am so glad you have joined our group....you should get plenty of support and info. Besides Patty and me...we have a few others who have been transplanted and I'm sure they will share their expeiences with you. Hoping for the best for you guys. love jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2003 Report Share Posted June 10, 2003 Gaynel.... I was transplanted in Oct.1995 and it went very well... I was in the hospital a little over 9 days....the procedure only took about 6 1/2 hrs for me...although they had to send me back down and open me back up as I had a bleeder " ...(so they told me later) I was out of recovery and IC in a day and a half and up and walking the next day. I really don't know what to tellyou about before the Tx...I think I may have been a little diferent than most.... I was never worried nor frightened or anxious. I didn't dwell on the upcoming operation. there were times I forgot to wear my beeper but I never was gone far from home or for any long periods of time. I waited about 10 1/2 mos from list to Tx and went about my business each day as usual. The phone call came around 8:30 am and was being sedated about 1;00 that afternoon. I hadto travel from Akron to Cleveland and I personally drove as my mother was a nervous wreck. However I must tell you I was a very sick puppy for well over a year before the Tx. Initially I was given 6 mos or so to live but I didn't think so myself. I just knew things would be OK. I had every complication of cirrhosis you can name....ascites (drained at least 4 times, bleeding varices with 2 hemorrhages, ( probably had more than 45 units of blood transfused in a two year period ...maybe more ,I had more than a dozen endoscopies, I was in the hospital for different lengths of time maybe 6-8 occasions. was semi-comotose from encephalopathy, lost all my body hair, was a nice grey-yellow color, started growing breasts and my testicles shrank, lost all my muscle mass ( I looked like a stick figure with a huge belly) had a time when I scratched a goood deal of skin off my body, had red palms and huge swollen ankles, had spider veins on my face and chest, frequent nose bleeds, could fall asleep at any time (once standing up smoking a cigarette),rambled on about nonsense, forgot what i was dong or saying in mid-sentence, had funny bowel movements to say the least and on and on...I was a mess . The only thing I had going for me was my sense of humor, which I never lost, I kept my nurses and doctors in stitches...and my faith in my higher power which told me no matter what happened it would be OK...so I never knew fear..not even up to going under...in fact I was joking just before I went out and my surgeon asked me if I wasn't even te least bit afraid and I said no...he was getting the big bucks and he should be the one who was nervous. It was a relative piece of cake...and I felt 1000 times better almost immediately after...and to tell the truth I never had any extreme pain and took no pain meds after I got home.,,,, The next 8 years is a story I'll save for later.. Just try not to worry or dwell on it....it will do you no good anyway and anticipation of future and unknown events is always worse than the actual event anyway. Worry will change nothing.....it is never like you imagine it will be....laugh some enjoy all you can and remember afterwards he won't be sick anymore...he will feel like a new man. love jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 Just wanted to write , saying thanks for your help. It has been helpful, Hope you will be feeling better soon. I will get checked to see what blood type I am. maybe I will be a match for Cliff. We do not have results for the MRI-- but, Dr. said , he was checking for cancer. Will let you know the news. Love, Gaynel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2009 Report Share Posted January 18, 2009 Hi JOanne, I am so glad you had a good nights sleep and that you found your answer! I'm really glad you didn't feel the need for the sleep aids...I've never used anything beyond the valerian myself and that wasn't even needed, but I am careful not to try to push my own extreme views on the " No drugs " policy I have in my life. Some people have different levels of need. But I'm really happy that you made it through okay! We've had lots of women with that burning feeling on our group....do the other people on the candida forum talk about the burning too? If so, that would be interesting...I wasn't aware that it was associated with candida. There are so many things that we share in terms of symptoms, and it has been hard for me to tell if it is candida related or not. Keep up with the good work Joanne...you are a fighter and that will keep you on the right path. God is your protector as well as your husband, as you know. Stay strong! Hugs, Patty > > You are so right about trusting the lord and making Him our husband. I > learned my lesson about dating outside the church. It is amazing how > quickly we can fall away, even when we think we are so strong. > > I have decided not to do a sleep aid. Yesterday I bought some > minerals, did a coffee enema and an epson salt bath and slept soooo > deeply. I am not sure what did it but it all worked. It was the first > truly good nights sleep that I had in over a month. I truly think the > burning is from candida. The buggers give out so many toxins. > Sometimes my eyes burn when I am detoxing. Many people on my other > support group for candida can't sleep but after a year or so, start to > sleep regularly. I think sleep aids would slow my healing process > (however tempted I am). > > Happy and blessed Sunday to all, > Love, > Joanne > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2009 Report Share Posted January 18, 2009 Hi Patty, I wish I knew about the burning thing and why I get it only when I am stressed out and the adrenalin is high or when I have over exercised. Both scenarios put me in to a detox state that feels like toxins are trying to push out of my body too fast. Thats all I know. I hate it when it happens and I do feel like taking drugs on those days. I recently took a questionaire for candida and one of the questions was " do you have burning or tingling and how severe is it? " So, that led me to believe that is is candida. The candida diet will also eliminate all heavy metals from the body because of the high fat content. So, whatever it is, it should get better over time. I can only take one day at a time and today is a good one. Walked 4 miles at the beach in shorts and a tank top! Love, Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2009 Report Share Posted January 31, 2009 It's so nice of you to take the time to write something so beautiful. My sister just called and I had a really good cry. I think that my trip back east made me realize how alone I am here in California. I was there for 3 weeks surrounded by family and now I feel so alone and depressed. She wants me to move back there. I am so tempted. I have too many bills for my health condition. And they are mounting with the doctor visits lately. I have no motivation to even go out of the house. Perhaps there is some good in this and that it is all God's plan. Take care, Joanne Quote Link to comment Share on other sites More sharing options...
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