Guest guest Posted November 11, 2000 Report Share Posted November 11, 2000 Hi Don, just wanted to tell you that we are taking Hunt to Jamaica in Jan so that he and my hubby can dive. Have you ever dived, dove or whatever the word is there? I know that it is not the best place for it but we got a really good deal on a resort for that week and there is a lot of other stuff for us non divers to do. In the package we got, 2 dives a day are included in the price so he is really excited. Just hope he feels up to it. We got travel insurance just in case. Have a good day Rosemary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2000 Report Share Posted November 12, 2000 Hi Rosemary, No, I've never been to Jamaica. I'm sure it will be a great time. Heck, I've enjoyed diving in a pool! <ggg> Even if he can't do all of the dives, he should still go. It's important to still do the things that you love, even if you have to cut down on the frequency or intensity. I don't know how strong he is, or how much the disease has affected him, but make sure he understands that it is perfectly ok to be too tired to do the 2nd dive, or the dives the next day. He may well be fine for all of them, but he should be sure to focus on what he CAN do, and enjoy those dives to the fullest than focus on what he can't do and let that spoil an otherwise great time. It's sometimes hard to predict how one will feel or react, so just be prepared to be supportive if he gets too fatigued. There were times when I'd get really mad because I could no longer do the things I used to do. Now I've learned to just roll with it and focus on what I can do. BTW...I'm extremely jealous!!! I wish I could go!!! <ggg> Do you have room in a suitcase?? Don Terradon Unlimited http://www.TerradonUnlimited.com "People who ask me how we can still have such a positive attitude after all we’ve been through, have it all wrong…We’ve been able to get through all that we have BECAUSE we have a positive attitude". Don Hanson 8/2000 -----Original Message-----From: mamacdoo@... [mailto:mamacdoo@...]Sent: Saturday, November 11, 2000 10:39 PM egroupsSubject: Re: [ ] DonHi Don, just wanted to tell you that we are taking Hunt to Jamaica in Jan so that he and my hubby can dive. Have you ever dived, dove or whatever the word is there? I know that it is not the best place for it but we got a really good deal on a resort for that week and there is a lot of other stuff for us non divers to do. In the package we got, 2 dives a day are included in the price so he is really excited. Just hope he feels up to it. We got travel insurance just in case. Have a good day Rosemary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2000 Report Share Posted November 19, 2000 Don - if you don't mindme asking what kind of side effects did your daughter have from the Paxil. My doctor had a hissy fit because I told him I wasn't going to take it, but he finally consented to start me out on 10mg and go from there. Has anyone got any suggestions or their experiences from Paxil? Thanks, (mhe3053904@...) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2000 Report Share Posted November 20, 2000 She was one of the very, very rare cases where here ups and downs were intensified. For both my wife and me, the side effects were very minor. A minor hand trembling was all we experienced. That went away in a few weeks. Don Terradon Unlimited http://www.TerradonUnlimited.com "People who ask me how we can still have such a positive attitude after all we’ve been through, have it all wrong…We’ve been able to get through all that we have BECAUSE we have a positive attitude". Don Hanson 8/2000 -----Original Message-----From: mhe3053904@... [mailto:mhe3053904@...]Sent: Monday, November 20, 2000 12:25 AM egroupsSubject: Re: [ ] DonDon - if you don't mindme asking what kind of side effects did your daughter have from the Paxil. My doctor had a hissy fit because I told him I wasn't going to take it,but he finally consented to start me out on 10mg and go from there. Has anyone gotany suggestions or their experiences from Paxil? Thanks, (mhe3053904@...) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2000 Report Share Posted November 26, 2000 JOAN Take out the contacts. that could be very bad for your eyes. > egroups >From: Mike Claffey <mclaffey@...> >Date: Sun, 26 Nov 2000 12:46:52 -0400 >Reply- egroups >Subject: [ ] Don > >Thanks for the reply. The eye doc. did call back. He seems to think >it's just a broken blood vessel. I know I should go to the er, but I >have two kids I would have to drag along with me. That is a big zero on >their fun-o-meter. So I probably will wait until tomorrow. I also >still have my contact lenses in. I'm sure thats also not a good thing. >Joan Claffey >NJ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2000 Report Share Posted November 26, 2000 At least you talked to someone... Don Terradon Unlimited http://www.TerradonUnlimited.com "People who ask me how we can still have such a positive attitude after all we’ve been through, have it all wrong…We’ve been able to get through all that we have BECAUSE we have a positive attitude". Don Hanson 8/2000 -----Original Message-----From: Mike Claffey [mailto:mclaffey@...]Sent: Sunday, November 26, 2000 10:47 AM egroupsSubject: [ ] DonThanks for the reply. The eye doc. did call back. He seems to thinkit's just a broken blood vessel. I know I should go to the er, but Ihave two kids I would have to drag along with me. That is a big zero ontheir fun-o-meter. So I probably will wait until tomorrow. I alsostill have my contact lenses in. I'm sure thats also not a good thing. Joan ClaffeyNJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2001 Report Share Posted February 16, 2001 > Don, > I'm glad we got that cleared up. My emotions have been a little, OK > a lot, on edge lately. Sorry you got caught in the firing range. > Sorry to hear that the prednisone caused your diabetes. I worry > about pancreatitis. I don't know that much about it except that I > need to keep my BS level. That's been very hard to do since I > started the prednisone. I'm sure you know all about that. Thanks > for writing back. > Debbie Debbie Diabetes doesn`t cause pancreatitis nor does high blood sugar rather it is the other way around. High BS may be a symptom of pancreatitis. Pancreatitis is relatively rare and usually resolves itself. Up to 80% of Chronic pancreatitis is caused by prolonge and abusive alcohol use. Try not to worry, I don`tthink you are a candidate for pancreaitis. I am sending a couple of pages of info on it. Jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2001 Report Share Posted February 17, 2001 Debbie, I certainly understand the emotional rollercoaster! Just ask my family!! LOL! Don Terradon Unlimited http://www.TerradonUnlimited.com "People who ask me how we can still have such a positive attitude after all we’ve been through, have it all wrong…We’ve been able to get through all that we have BECAUSE we have a positive attitude". Don Hanson 8/2000 -----Original Message-----From: dfisher4140@... [mailto:dfisher4140@...]Sent: Friday, February 16, 2001 6:10 PM Subject: [ ] DonDon,I'm glad we got that cleared up. My emotions have been a little, OK a lot, on edge lately. Sorry you got caught in the firing range. Sorry to hear that the prednisone caused your diabetes. I worry about pancreatitis. I don't know that much about it except that I need to keep my BS level. That's been very hard to do since I started the prednisone. I'm sure you know all about that. Thanks for writing back.Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2001 Report Share Posted March 20, 2001 Re low prednisone doses and weight level: I'm at 7.5mg/5mg Prednisone as of this week. As I understand it, my doctor tells me that at 7.5, the Prednisone no longer affects my weight or energy level, as it's about what the body would produce on its own. However, my weight stays exactly the same -- I don't vary by even a pound, after gaining 40 pounds in six weeks this summer, and I continue to tire easily. I try to get as much gentle exercise as possible each day. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2001 Report Share Posted March 20, 2001 Hi Kathy, No problem! I've been stuck at 3mg for about 7 months, now. The joint an muscle pain is very noticeable. My asthma has started to be a problem again, too. My doc is pretty tolerant and is fine with me regulating my own taper, but he thinks I should start back up again. So...I'm going to do the alternating 3mg/2mg doses to drop 1/2 mg at a time. I've dropped 30 pounds since I started on the diabetic diet, but have stayed at the same weight now for many months. I think I may have to be completely off before I'll see much more weight loss. I'm sure if I exercised, I'd go down. But it's kind of a "Catch 22". Eliminate the prednisone to loose weight, but can't exercise because the joints hurt too much! Arghh!!! I'm hoping that once I'm off, I can start to loose weight and be better able to be more active, which will help me loose more weight. Also exercising the joints and muscles should help ease some of the stiffness and pain. At least that's what I'm hoping!! Four years ago I was running up and down the soccer field, reffing several games in a row...so this inactivity is driving me nuts! Don Terradon Unlimited Creative Embroidery http://www.TerradonUnlimited.com "People who ask me how we can still have such a positive attitude after all we’ve been through, have it all wrong…We’ve been able to get through all that we have BECAUSE we have a positive attitude". Don Hanson 8/2000 -----Original Message-----From: KATBERCOO@... [mailto:KATBERCOO@...]Sent: Tuesday, March 20, 2001 5:05 PM Subject: [ ] DonDear Don: How has the prednisone wean gone for you? Have you had a lot of trouble with joint pain, or has it been easier then you thought it would be? I was glad to hear that your diabetes and eye problems have improved since you've gone down in dosage. I've been weaning since January and have gone from 10 to 8 mg, but am starting to have trouble with my other auto immune problems (arthritis, tendonitis and intestinal problems). Has you weight gone down more since you've been at the lower dosage, too? Sorry to bombard you with questions...have a good week! Kathy (AIH) Seattle area Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2001 Report Share Posted March 20, 2001 I have been on 5 mg for 2 months now. Due to my heart attack in october, I exercise 5 days a week for 40-60 minutes a day, 1/2 on tredmill (3.8-4.0 mph) & 1/2 on bike (2.6-2.8 mph), and no weight loss at all. My hep. told me once that I got below 7.5mg that I could see a weight loss - I'm still waiting. The only thing wierd about me was that while on high doses above 7.5mg, I didn't have a weight gain. So far I have gained 5 lbs since I have been on low doses (including my low fat heart healthy diet) :-( I am now seriously considering going on Don's diabetic diet, hoping it will help. -Clyde -- =========================================================+ Help save a life, become an organ and tissue donor today.| =========================================================+ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2001 Report Share Posted March 20, 2001 Harper, I think the doctors assume that the adrenals wake up gradually, only producing what is necessary for "normal" levels. I'm not convinced that is a good assumption. Most people I've talked to over the years on this and a couple of lupus lists, do not start loosing until they have been completely off pred for several months. Only then do the pounds start to shed. That would tend to indicate that when the adrenals wake up, they start producing the "normal" level and whatever pred you are taking is added to that. Otherwise, there would be no reason to continue to taper once below 7.5mg, once you were sure that the adrenals have woken up. That would contradict the many of us who seem to get stuck at 3mg and flare when we go below that. Don Terradon Unlimited Creative Embroidery http://www.TerradonUnlimited.com "People who ask me how we can still have such a positive attitude after all we’ve been through, have it all wrong…We’ve been able to get through all that we have BECAUSE we have a positive attitude". Don Hanson 8/2000 -----Original Message-----From: flatcat9@... [mailto:flatcat9@...]Sent: Tuesday, March 20, 2001 5:31 PM Subject: Re: [ ] DonRe low prednisone doses and weight level: I'm at 7.5mg/5mg Prednisone as of this week. As I understand it, my doctor tells me that at 7.5, the Prednisone no longer affects my weight or energy level, as it's about what the body would produce on its own. However, my weight stays exactly the same -- I don't vary by even a pound, after gaining 40 pounds in six weeks this summer, and I continue to tire easily. I try to get as much gentle exercise as possible each day. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2001 Report Share Posted March 26, 2001 Dear Don: Sorry I'm so late in replying. Thanks for the info about your pred wean. Gives me hope that it's possible. I'm just starting the climb over 'pain mountain' and hopefully I'll be able to make it to the other side. This last drop has been the hardest so far and I'm going to wait for a while before the next one. Congrats on your weight loss! I've lost 6 and hopefully will be able to lose more! I'm taking it day by day. Have a good week! Kathy (AIH) Seattle area Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2009 Report Share Posted January 13, 2009 gosh lol love don in kansas From: PeachStatePam <figment@...>Subject: [ ] Don Date: Tuesday, January 13, 2009, 8:44 PM Hi Don. Actually I wish I had an *off* switch! LOL I just can't seem to stop posting as when I was diagnosed in 1997 there wasn't any info out there, no google, one email list out of England (with AWESOME PEOPLE!), my brother made a vapor ware chat room for *us* in 1999 before all the IM's and it moved really SLOW but people came,I had a TON of questions and was THRILLED to talk to others with this crummy disease. If just one of the emails gets to the right person that needed it then I know I have helped. Thank you for the sweet note. You are one of my favorite people too!PeacePam~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~>> Pam. I want to thank you for all the research and posts you have spent countless hours doing. We are all lucky to have you. You are one of my most favorate ppl. love don in kansas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2009 Report Share Posted January 23, 2009 Thank you Pam. One more question. Where would one go to become a trial recip.? love don in kansas > From: PeachStatePam <figment@...> > Subject: [ ] Don > hepcwebWarriors > Date: Friday, January 23, 2009, 6:49 PM > > > > > > > > > > > > > > > > > > > > > You can click on this > link: http://www.hivandhe > patitis.com/ 2007icr/aasld/ docs/121107_ a.html and > > get some info or go to HepCingles2 and put 9190 into the > message search > area :-) > > Peace > Pam > > Also don't forget the > drug pipeline at http://www.hcvadvoc > ate.org/hepatiti s/hepC/HCVDrugs. html for > info on upcoming meds > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2009 Report Share Posted January 23, 2009 Clinical trials are carried out in various places from transplant/university centers to local hepatologists offices in usually bigger cities. You can check clinicaltrials.gov and others that I just blanked out on LOL There are three..... veritas or something like that. I keep posting the link to the Handbook and no one apparently ever goes there because most all answers can be found in the Handbook at http://www.healsofthesouth.org/Hep_C_Handbook.html All three clinical trial places are listed there. If you are in Kansas in the middle of nowhere it might be hard to find a clinical trial near you. Where I live is 2 hours from the University of Florida in Gainesville where the Shands Hospital and Transplant Center is located and there are many hepatologists there and they are always running clinical trials of some kind. I usually don't qualify because they don't want cirrhotic patients. We might skew their numbers! Peace Pam > > > From: PeachStatePam <figment@...> > > Subject: [ ] Don > > hepcwebWarriors > > Date: Friday, January 23, 2009, 6:49 PM > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2009 Report Share Posted January 23, 2009 Last question, then Ill leave you alone. Can I come live at your house so I can get out of this god alful state and nearer to some real medical help? lol but kinda serious too. love don in kansas From: PeachStatePam <figment@...>Subject: [ ] Re: Don Date: Friday, January 23, 2009, 7:11 PM Clinical trials are carried out in various places from transplant/universi ty centers to local hepatologists offices in usually bigger cities. You can check clinicaltrials. gov and others that I just blanked out on LOL There are three..... veritas or something like that. I keep posting the link to the Handbook and no one apparently ever goes there because most all answers can be found in the Handbook at http://www.healsoft hesouth.org/ Hep_C_Handbook. htmlAll three clinical trial places are listed there. If you are in Kansas in the middle of nowhere it might be hard to find a clinical trial near you. Where I live is 2 hours from the University of Florida in Gainesville where the Shands Hospital and Transplant Center is located and there are many hepatologists there and they are always running clinical trials of some kind. I usually don't qualify because they don't want cirrhotic patients. We might skew their numbers! PeacePam> > > From: PeachStatePam <figment@... >> > Subject: [ ] Don> > hepcwebWarriors> > Date: Friday, January 23, 2009, 6:49 PM> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2009 Report Share Posted January 23, 2009 Hey Don. You don't ever have to leave me alone. Always ask questions! I just often wonder if anyone EVER goes to any of the links that I post. Sometimes I wonder if I am just wasting my time. Wish I had a house that you could come to. I am in my mom's house and the situation isn't the best. Grateful for the roof over my head but I haven't lived with her since the age of 18 for many good reasons! LOL Was really hard for me when treatment made me so sick that I couldn't go back to Colorado and go back to work :-( Life is full of changes! Peace Pam > > Last question, then Ill leave you alone. > Can I come live at your house so I can get out of this god alful state and nearer to some real medical help? lol but kinda serious too. > love > don in kansas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2009 Report Share Posted May 20, 2009 Hi Don So sorry to hear you have been so unwell. Hopefully the antibiotics will clear up the remaining infection and you will be well again. Your journey is so inspiring, it saddens me to hear you have had such a rough patch. Sending healing thoughts your way Judy Telford Need a Holiday? Win a $10,000 Holiday of your choice. Enter now.http://us.lrd./_ylc=X3oDMTJxN2x2ZmNpBF9zAzIwMjM2MTY2MTMEdG1fZG1lY2g\ DVGV4dCBMaW5rBHRtX2xuawNVMTEwMzk3NwR0bV9uZXQDWWFob28hBHRtX3BvcwN0YWdsaW5lBHRtX3B\ wdHkDYXVueg--/SIG=14600t3ni/**http%3A//au.rd./mail/tagline/creativeholi\ days/*http%3A//au.docs./homepageset/%3Fp1=other%26p2=au%26p3=mailtaglin\ e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2009 Report Share Posted May 20, 2009 Thanks Judy... > > Hi Don > So sorry to hear you have been so unwell. Hopefully the antibiotics will clear up the remaining infection and you will be well again. Your journey is so inspiring, it saddens me to hear you have had such a rough patch. Sending healing thoughts your way > Judy Telford > > > > Need a Holiday? Win a $10,000 Holiday of your choice. Enter now.http://us.lrd./_ylc=X3oDMTJxN2x2ZmNpBF9zAzIwMjM2MTY2MTMEdG1fZG1lY2g\ DVGV4dCBMaW5rBHRtX2xuawNVMTEwMzk3NwR0bV9uZXQDWWFob28hBHRtX3BvcwN0YWdsaW5lBHRtX3B\ wdHkDYXVueg--/SIG=14600t3ni/**http%3A//au.rd./mail/tagline/creativeholi\ days/*http%3A//au.docs./homepageset/%3Fp1=other%26p2=au%26p3=mailtaglin\ e > > Quote Link to comment Share on other sites More sharing options...
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