Guest guest Posted August 1, 2003 Report Share Posted August 1, 2003 Melinda, I'm so sorry to hear about your Dad. I had a feeling earlier this week that something was going on because we hadn't heard from you. I'm sorry my premonition was right. I'm glad you've been able to be there to help your Mom get your Dad through this latest bit and that you are able to say your goodbyes. Take care of yourself and remember you are in our prayers. Hugs, Jane Update Hello all, What a week. Won't bore you with the details right now, but just to say we got Daddy thru another crisis and he is at home with home health skilled nursing, pt and ot that will begin next week. He has told us his last wishes and will be signing a dnr today or over the weekend as soon as my sister brings it to him and they can get two neighbors to witness it. I am leaving in the morning to go back to Eugene. I am worn out and need to be with my family. There isn't much else that I can do here and I am fairly certain that this is goodbye between me and dad.I am ok with this. It is hard though. I have doctors appts next week that I must keep and I need to sleep. Will post and let you know that I made it home safely. Keep us in your prayers. Thanks so much. Hugs and love to all.MelindaPlease visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2003 Report Share Posted August 3, 2003 Sorry to hear about your dad Melinda. x0x0x0 Shirley -- Update Hello all, What a week. Won't bore you with the details right now, but just to say we got Daddy thru another crisis and he is at home with home health skilled nursing, pt and ot that will begin next week. He has told us his last wishes and will be signing a dnr today or over the weekend as soon as my sister brings it to him and they can get two neighbors to witness it. I am leaving in the morning to go back to Eugene. I am worn out and need to be with my family. There isn't much else that I can do here and I am fairly certain that this is goodbye between me and dad.I am ok with this. It is hard though. I have doctors appts next week that I must keep and I need to sleep. Will post and let you know that I made it home safely. Keep us in your prayers. Thanks so much. Hugs and love to all.MelindaPlease visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2003 Report Share Posted August 9, 2003 Glad to hear things are moving along on all fronts. They called yesterday and placed Denny's pills (ribavirin) on hold for two weeks and ordered additional labs (well, the CBC repeated weekly for three weeks). He's become anemic beyond the acceptable anemia for this med protocol. He is to remain on the shots(weekly interferon) as his white count is fine. Oh well, in two weeks we find out his current viral load--blood was already drawn but it takes that long to get back from a CA lab. Kathy Update Hi friends, I will have been back in Eugene a week tomorrow but am just beginning to feel half way human again. I have read all of the posts and feel like I have a good grip on what is happening in each of your lives and will try to respond appropriately. I talked to my parents yesterday and my dad's mind is a lot clearer and he seems to be feeling somewhat better. They forgot his dr's appt this week (ARG) but mom took a urine specimen over for an ua and culture and sensitivity. He is working with the pt to walk more, more safely and just get some exercise around the house. Mother says his appetite is no better, which concerns me--. Today is the last day of his antibiotics unless the dr decides to extend it. I am doing pretty good--saw the infectious disease dr and ortho this week. My knee looks good but the inf dis dr drained off about 30 cc of fluid and sent it for cell count, culture and sens and one other test that I can't remember. She extended the vanco for at least one more week and possibly two depending on what the culture reports out. It maybe Monday before I know anything. My c-reactive protein and sed rate are still elevated but the rheumy feels that this is also due to the fact that I am over a month late on Remicaid. The morning stiffness and joint pain just won't go away and is getting progressively worse. He suggested a replacement dose of 7.5 mg pred, which the inf dr okayed. The stiffness isn't as bad, but I can tell my appetite has increased. Ideally, I could wean off the pred when I can have my next Remicaid. I do not want to gain the weight back that I have lost (right around 35 pounds since Feb 1st) and would like to stay on the downhill slope--still need to lose about 55 more to get down to where I want to be at 140.I know--vanity, vanity all is vanity. Update on update---just got a call from inf dr--this weeks labs look really good and so far preliminary culture shows no growth at 72 hours. She is ordering vanco d/c after this weeks supply--said there is an allergic component (high esonophils) in joint that might be helped with zyrtec. Of course, if final culture is positive, I can forget all of the above but I am hoping for the best. I don't mean to be a doubting but I have had preliminary results withthe MRSA be negative and then the final be positive and there has been a delay in treatment both times. But overall, I am really encouraged as my knee looks soooo much better than when all this hit the fan in mid June. The ortho wants me to keep it compressed either with an arthropad or ace wrap until he sees me at the end of the month for what should have been six week post op xrays. I can walk a lot better with the arthropad and the pain is much more tolerable. Will look forward to being able to swim soon. I really need to get my knee stronger than it is. Bob is taking the next two weeks off and is planning on taking the kids over to central Oregon to camp and hike this next week. I am going to bow out and stay home and feed the cats and keep the yard watered. The following week we are going to get a hotel on the coast and stay a couple of days at the beach. I think I will join them for that excursion. Sara is busy planning her 16th birthday celebration. She wants a barbeque and party here at the house. We said fine, as long as it remains outdoors with bathroom privileges only and asked her to limit it to 25 kids or so. She asked if she could invite boys (her first time) and we okayed that too. I told her to invite the families of her three best friends also so there might be some adults to visit with and also stand guard. I am not that worried as Sara understands and agrees with the boundaries we have set. I am more concerned about having enough food but I asked her to emphasize the RSVP so that we can get a good heads up on how much food to buy.I cannot believe my baby is going to be 16. She finally passed the test for her permit and has been driving some with Bob. I am leaving that job to him. I am not a good teacher. Mark has been busy growing and doing some weight training for wrestling this summer. He will be 13 the end of Sept. He has had several friends over for sleepovers. Had one last night but they are both on my S**t list for staying up all night. I am trying to get both kids sleep straightened out again and have told them that midnight is the absolute latest. I have about one month before school starts and we have already told them that 9:30-10pm will be the absolute latest. Kids..... We have had strange weather too. It rained, thundered and lightning struck several trees on Wed am. I slept thru it, but found both kids in Mark's room asleep. Neither one would admit to being scared....LOL While in Norman (OK) we had a storm come thru with 90 mile an hour winds--did alot of damage to trees and fences. My sister had an entire section of her fence down which her yard guy was kind enough to put it back up for her. She and my parents use the same guy--he is a school teacher trying to make ends meet and really does a great job. He also does small repairs for my folks. Well, I didn't mean to write a novel...I need to tend to my kitchen and bathroom--everyone seems to need a review course on loading and unloading the dishwasher...LOL Take care everyone.Hugs and love,MelindaPlease visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2003 Report Share Posted August 9, 2003 Glad to hear things are moving along on all fronts. They called yesterday and placed Denny's pills (ribavirin) on hold for two weeks and ordered additional labs (well, the CBC repeated weekly for three weeks). He's become anemic beyond the acceptable anemia for this med protocol. He is to remain on the shots(weekly interferon) as his white count is fine. Oh well, in two weeks we find out his current viral load--blood was already drawn but it takes that long to get back from a CA lab. Kathy Update Hi friends, I will have been back in Eugene a week tomorrow but am just beginning to feel half way human again. I have read all of the posts and feel like I have a good grip on what is happening in each of your lives and will try to respond appropriately. I talked to my parents yesterday and my dad's mind is a lot clearer and he seems to be feeling somewhat better. They forgot his dr's appt this week (ARG) but mom took a urine specimen over for an ua and culture and sensitivity. He is working with the pt to walk more, more safely and just get some exercise around the house. Mother says his appetite is no better, which concerns me--. Today is the last day of his antibiotics unless the dr decides to extend it. I am doing pretty good--saw the infectious disease dr and ortho this week. My knee looks good but the inf dis dr drained off about 30 cc of fluid and sent it for cell count, culture and sens and one other test that I can't remember. She extended the vanco for at least one more week and possibly two depending on what the culture reports out. It maybe Monday before I know anything. My c-reactive protein and sed rate are still elevated but the rheumy feels that this is also due to the fact that I am over a month late on Remicaid. The morning stiffness and joint pain just won't go away and is getting progressively worse. He suggested a replacement dose of 7.5 mg pred, which the inf dr okayed. The stiffness isn't as bad, but I can tell my appetite has increased. Ideally, I could wean off the pred when I can have my next Remicaid. I do not want to gain the weight back that I have lost (right around 35 pounds since Feb 1st) and would like to stay on the downhill slope--still need to lose about 55 more to get down to where I want to be at 140.I know--vanity, vanity all is vanity. Update on update---just got a call from inf dr--this weeks labs look really good and so far preliminary culture shows no growth at 72 hours. She is ordering vanco d/c after this weeks supply--said there is an allergic component (high esonophils) in joint that might be helped with zyrtec. Of course, if final culture is positive, I can forget all of the above but I am hoping for the best. I don't mean to be a doubting but I have had preliminary results withthe MRSA be negative and then the final be positive and there has been a delay in treatment both times. But overall, I am really encouraged as my knee looks soooo much better than when all this hit the fan in mid June. The ortho wants me to keep it compressed either with an arthropad or ace wrap until he sees me at the end of the month for what should have been six week post op xrays. I can walk a lot better with the arthropad and the pain is much more tolerable. Will look forward to being able to swim soon. I really need to get my knee stronger than it is. Bob is taking the next two weeks off and is planning on taking the kids over to central Oregon to camp and hike this next week. I am going to bow out and stay home and feed the cats and keep the yard watered. The following week we are going to get a hotel on the coast and stay a couple of days at the beach. I think I will join them for that excursion. Sara is busy planning her 16th birthday celebration. She wants a barbeque and party here at the house. We said fine, as long as it remains outdoors with bathroom privileges only and asked her to limit it to 25 kids or so. She asked if she could invite boys (her first time) and we okayed that too. I told her to invite the families of her three best friends also so there might be some adults to visit with and also stand guard. I am not that worried as Sara understands and agrees with the boundaries we have set. I am more concerned about having enough food but I asked her to emphasize the RSVP so that we can get a good heads up on how much food to buy.I cannot believe my baby is going to be 16. She finally passed the test for her permit and has been driving some with Bob. I am leaving that job to him. I am not a good teacher. Mark has been busy growing and doing some weight training for wrestling this summer. He will be 13 the end of Sept. He has had several friends over for sleepovers. Had one last night but they are both on my S**t list for staying up all night. I am trying to get both kids sleep straightened out again and have told them that midnight is the absolute latest. I have about one month before school starts and we have already told them that 9:30-10pm will be the absolute latest. Kids..... We have had strange weather too. It rained, thundered and lightning struck several trees on Wed am. I slept thru it, but found both kids in Mark's room asleep. Neither one would admit to being scared....LOL While in Norman (OK) we had a storm come thru with 90 mile an hour winds--did alot of damage to trees and fences. My sister had an entire section of her fence down which her yard guy was kind enough to put it back up for her. She and my parents use the same guy--he is a school teacher trying to make ends meet and really does a great job. He also does small repairs for my folks. Well, I didn't mean to write a novel...I need to tend to my kitchen and bathroom--everyone seems to need a review course on loading and unloading the dishwasher...LOL Take care everyone.Hugs and love,MelindaPlease visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2003 Report Share Posted September 24, 2003 Felt fabulous yesterday and of course overdid it. It was the first day in ages that I have felt MOTIVATED to do any housework,etc. I believe it is the treatment from my ND for EBV and molds that is helping me. He said that I should start feeling better right away. I wish that I could get the vitamin drips weekly as he suggested, but I do get then bi-weekly. I am hoping that this time, the " wellness " will last. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2003 Report Share Posted September 25, 2003 > Well, I had several half way decent (not perfect) days > and then it all went down hill. Since Tuesday I've > been dragging, aching pressure in the body, achy face > etc and sleeping a lot (which really doesn't help but > feels good at the time). Not sure what happened. I > even took 4 grains of the Armour this morning Well DARN!! Sorry to hear that. Have you ever had labs done on the 4 grains to see where your free T3 is?? We've had other folks here who did do labs which showed an excellent free T3/T4. So it turned out to be something else that needed " fixin " . One gal, for example, discovered that she had acute EBV that were causing her symptoms. I also had a dip---it turned out to be excessively low Ferritin. Keep us informed as to how you are doing. You are still on your way, you just hit a bump in the road that needs to be fixed. Janie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2003 Report Share Posted September 25, 2003 > Well, I had several half way decent (not perfect) days > and then it all went down hill. Since Tuesday I've > been dragging, aching pressure in the body, achy face > etc and sleeping a lot (which really doesn't help but > feels good at the time). Not sure what happened. I > even took 4 grains of the Armour this morning Well DARN!! Sorry to hear that. Have you ever had labs done on the 4 grains to see where your free T3 is?? We've had other folks here who did do labs which showed an excellent free T3/T4. So it turned out to be something else that needed " fixin " . One gal, for example, discovered that she had acute EBV that were causing her symptoms. I also had a dip---it turned out to be excessively low Ferritin. Keep us informed as to how you are doing. You are still on your way, you just hit a bump in the road that needs to be fixed. Janie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2003 Report Share Posted September 25, 2003 > I should add that I've had a little spurt of energy > both yesterday and today in the afternoon. That's a > strange time of day to hit. Hugs, Carol B Energy is strange! For example, I feel fabulous on my current dose of Armour. Lots of energy. I can stand nearly all day at my store, doing this and doing that, and still go home and do more and more. BUT THEN, yesterday, I was TIRED all day. Today, I am fine!! Who knows. Same with my female hormonal cycle. When I'm not in my period, I have the above fabulous energy. The energizer bunny and I are friends. Then, when my period hits---you'd think I was hypo and/or adrenal fatigued, and/or low iron, you name it---all over again. Janie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2003 Report Share Posted September 25, 2003 > I should add that I've had a little spurt of energy > both yesterday and today in the afternoon. That's a > strange time of day to hit. Hugs, Carol B Energy is strange! For example, I feel fabulous on my current dose of Armour. Lots of energy. I can stand nearly all day at my store, doing this and doing that, and still go home and do more and more. BUT THEN, yesterday, I was TIRED all day. Today, I am fine!! Who knows. Same with my female hormonal cycle. When I'm not in my period, I have the above fabulous energy. The energizer bunny and I are friends. Then, when my period hits---you'd think I was hypo and/or adrenal fatigued, and/or low iron, you name it---all over again. Janie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2003 Report Share Posted September 26, 2003 don't be disocuraged! You will get there. I just keep thinking you need cortef plus Armour, DHEA etc. Gracia in ME > Well, I had several half way decent (not perfect) days > and then it all went down hill. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2003 Report Share Posted September 26, 2003 don't be disocuraged! You will get there. I just keep thinking you need cortef plus Armour, DHEA etc. Gracia in ME > Well, I had several half way decent (not perfect) days > and then it all went down hill. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2003 Report Share Posted September 26, 2003 don't be disocuraged! You will get there. I just keep thinking you need cortef plus Armour, DHEA etc. Gracia in ME > Well, I had several half way decent (not perfect) days > and then it all went down hill. Quote Link to comment Share on other sites More sharing options...
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