Guest guest Report post Posted July 10, 2002 I am online now and have messanger if you or anyone wants to chat my id is suzzzies2000@... <R202@...> wrote: Hi suzie Sorry to hear about your daughter flaring again and having breathing problems on top of all that. My breathing problems started when I came home from the hospital after the onset of stills and has gotten worse over time. I never had any breathing difficulties before AOSD. The doctor don't seem to always listen because I have been telling them for 3 yrs something is wrong. All my friends and family noticed right away I was breathing very heavy. On July 22 I will hopefully, finally get an answer. rjones202@... Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 11, 2002 Dear Suzie, I am so sorry for what you are both going through right now. My heart breaks for when I hear that she is really having a hard time. Did you call the doctor today and discuss with him/her what is going on with her? You are a mother and have all the right in the world to worry about her, and like you..I act on " motherly instincts " , it's just natural, they are our children and we would do anything for them. When I tend to drop my meds or increase Suzie, my rash seems to show up and I fever more also. I get extremely cranky and sore and very fatigued. I really have a hard time of it, especially when I drop below 10mg of prednisone. I always seem to have a problem after that. Please send my best thoughts. We are all so fond of her and only wish good things and better health for her. I am sorry Suzie, and wish that I had better answers to help, but I don't, but I am here and really hear what you are saying as a parent. I hope that there is nothing wrong and that everything will be okay. Sending you hugs..both of you... Love, Sue #2 Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 31, 2002 Dear Suzie, It is so nice to hear that is doing so well. You are an incredible Mom. Thanks for the update. Keep us posted when you can. Love, jatw@... Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 28, 2003 I just wanted to let you know that I did both treatments as you then I did the peg. I am virus free now. The side effects are as bad as the other two TX. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 28, 2003 La Donna, everyone's body is different, so it might not be as bad because I have talked to people from both sides and some have had very mild sides and others it was bad so you can't say it will be! Love,Teri Subject: Re: suzie I just wanted to let you know that I did both treatments as you then I did the peg. I am virus free now. The side effects are as bad as the other two TX. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 8, 2003 Hey Marie where do you live ? SuzieMarie Kuhn <mariemk@...> wrote: Wow, I won't feel badly any more about having to drive an hour for a doctor. Good luck.MarieAt 08:38 PM 11/8/2003, you wrote:>Hi Marie , I live in Thunder Bay , Ontario , Canada , the population here >is around 100,000 . The thing is we're isolated . The closest city of any >size is Winnipeg , Manitoba . My health insurance is for Ontario - I could >be referred to a doc in Winnipeg but that could take months & Winnipeg is >an 8 hour drive ( at least.) My doc told me that if I wouldn't do tx , >all he could do for me would be to refer me to a specialist down east - I >think Hamilton or Toronto which are both at least 1,000 miles from T. Bay >. I would have to pay my own air fare & then try to get it back from the >govt , not to mention hotel or whatever . It tires me out just thinking >about it !!!>Suzie Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 9, 2003 I'm in a city called Niceville, FL. They say you have to be nice to live here. LOL. It's about an hour east of Pensacola and about 15 minutes north of Destin, FL. The area is really growing and luckily, so is the access to medical services. Marie K. At 09:16 PM 11/8/2003, you wrote: >Hey Marie where do you live ? >Suzie Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 25, 2004 Yeah Pat you're right. When I use my real age & they don't believe me - I can show them my birth certificate & prove it. I gyess I won'tmake myself older after all. Suzie Next time I'm coming back as a cat . Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 17, 2004 I don't know but I sure hope so. I'll probably have to go on Welfare. I'm really too tired to go looking for a new job & I don't think you can collect inemplohment if you're fired for cause. Keep your fingers crossed that Disability comes through for me. SuzieLiz <elwilkinson@...> wrote: Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 18, 2004 Cool, can you get Welfare fpr having Spyke has a dependant? Ha Ha Kathy B. Hey dear my prayers are with you Kathy suzie <suzieandsandy@...> wrote: I don't know but I sure hope so. I'll probably have to go on Welfare. I'm really too tired to go looking for a new job & I don't think you can collect inemplohment if you're fired for cause. Keep your fingers crossed that Disability comes through for me. SuzieLiz <elwilkinson@...> wrote: Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 4, 2004 I'm having edema with pitting & major swelling in my lower legs, ankles and feet. (pitting is when you mash a spot and the dent stays a while after you move your finger) It's been getting worse for a couple months and every doctor (3) that has looked at it says, Hmmmm, I don't know. It usually goes down after staying off over the weekend but my Thurs & Friday, my ankle bones have toally disappeared. So now my gastro has me on Lasix & Keflex (which is doing a number on the IBS) and I'm having the ultrasound on Tuesday. I believe Randy/Sparky got mad and left after he started his own Hep singles group. Faith is the ability to not panic. -----Original Message-----From: suzie [mailto:suzieandsandy@...] Sent: Saturday, September 04, 2004 3:36 PMHepatitis CSupportGroupForDummies Subject: RE: De/Pat Hey De, What's happenning with your legs? It's either brain fog ir I was absent that day. Fill me in. What happenned to that guy Sparky who was around a few months ago?? Another case of fogged brain I guess. Suzie Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 4, 2004 The dermatologist was NOT a joke. It's really what the doc said! Maybe because the swelling makes the skin red????? Hell, I don't know. I got a big wedge thingy to elevate my feet. It's always better on Monday and gets worse thru Friday night, then staying off over the weekend helps again. De Faith is the ability to not panic. -----Original Message-----From: suzie [mailto:suzieandsandy@...] Sent: Saturday, September 04, 2004 4:37 PMHepatitis CSupportGroupForDummies Subject: RE: Suzie Hi De, O K, now I get it. Can't see why they'd think of sending you to a dermatologist (or was that a joke?) I've got the same thing - they put me on Lasix & another one - novo spiroton 25mg & apo furosemide 40mg) All they did is make me pee like a race horse. My feet, ankles, hands & wrists swell & it's like you said, mash it down & it stays down for a while after you let go. It goes up almost to my knees some times. The only thing that makes it better is to elevate the feet above the head - then the swelling goes down some. Can't sit or stand, it just gets worse. Good luck & if you find something that works - let me know. Hugs, Suzie and Spyke Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 8, 2004 OK, who else had a Chatty doll growing up? De Faith is the ability to not panic. -----Original Message-----From: kathy brunow [mailto:kathy-boo@...] Sent: Tuesday, September 07, 2004 7:00 PMHepatitis CSupportGroupForDummies Subject: Re: Suzie Aw' come on Suz! You have to admit it does fit.. Know don't tell me that you have never, and I mean never! Pulled a funny at the way some thing sounds??? Hemmm! It's like my name! for years I had to endure jibs & jabs about Chatty Kathy!! Kathy B... Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 8, 2004 I live in Dacula (duh-que-la) and every called it Dracula! Folks, don't forget to delete the ends of emails when you reply! I know we all forget, but let's try. It makes digest too hard to read and some folks who need us might leave. De Faith is the ability to not panic. -----Original Message-----From: suzie [mailto:suzieandsandy@...] Sent: Tuesday, September 07, 2004 8:46 PMHepatitis CSupportGroupForDummies Subject: Re: Suzie O K Kathy, I can understand a little funnin. I got called Suzie Creamcheese for many years & now it's back to Suzie Q but it's over now k? Chilliwack is a nice town with a funny name - hell, I live in Thunder Bay . There are lots of places with odd names like Moosejaw Saskatchewan or Ear Falls & Pickle Lake (2 villages close to here) or Kicking Horse Pass. It's their turn now K? Suzie Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 8, 2004 my sister did and her name was Kathy and she wouldn't let me play with it. -------Original Message------- OK, who else had a Chatty doll growing up? De Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 8, 2004 Suzie, you hang in there and know how much we all love you. You can and will get through this. Don't argue with me, just agree and make it happen! Love & hugs, Faith is the ability to not panic. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 15, 2004 Damn, Suze, 3 months? That's a LONG time. I had my results in a week. I'm sick of this wait for you! ((((((((((((((Suzie)))))))))))))))) De Faith is the ability to not panic. -----Original Message-----From: suzie [mailto:suzieandsandy@...] Sent: Wednesday, September 15, 2004 12:43 AMHepatitis CSupportGroupForDummies Subject: Re: I'm new Hey Barb, Girl I know where you're coming from! My name is Suzie, I'm 54 tears & was diagnosed in 1993 or so - can't remember some times - brain fog or menepause moment who knows? I had a real good gastro at first - he had me on tx twice once interferon alone & once interferon & ribavirin. Then he died & since this is a small city, there were no more Gastros so I started seeing an infectious diseases doc. He wants me to go on tx again even tho I did not respond either time I was on before. I've been waiting for over six months for a liver biopsy so I can find out what my liver is doing now - I had one in Dec. 1995 & it said cirrhosis.I really hate the idea of going back on tx - I had every side in the bools & then some, all for nothing - the second time my LFTs got WORSE. I too have pitting edema, rashes & itches,weight gain , insomnia & the fatigue is unbelievable. It's always "hurry up & wait" I am so tired of being tired. After waiting so long for a biopsy I've decided to give it one more try. They say that time on tx gives your liver a break so I'll do that.I just saw my doc today & he told me to come back in 3 months - we'll have the biopsy results by then. Three months! There's nothing we can do to speed them up but try making a new appointment with your liver doc. Gail swears by vitamin B12 in mega doses - like 1200 mcg a day I'm trying it & I do seem to have more energy - can't hurt. I'm glad you found us. There are a lot of good people in this group. One big happy family - well - ok a bunch of strange but wonderful kooks who will go out of their way to do anything they can to help. Welcome, Suzie Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 15, 2004 Hi Suzie: What state and area are you located in? It is virtually unheard of for anyone to have to wait for Liver bx results 3 months. In fact, when my Transplant Team performs a Liver bx on me, they have it back in a matter of hours!!!!!! On the other hand, let's discuss the B12 regimen that you mentioned. If you are going to take B12 in any form, first have a B12 serum level drawn toi use as a baseline for comparison. THEN- Get the OK from your MD to receive a B12 injection every 2 weeks or so. This is the most effective means of benefit from the supplement. I received B12 injections weekly for almost 1 year after my Liver Transplants. They did a world of good for my stamina. However, my B12 serum level was twice the high normal range- and I immediately discontinued the shots. Love Ya, Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 15, 2004 YES......Pat McBride <pmcbride1@...> wrote: the doc said all my numbers we're normal...should i ask about this when I go in Oct??? right before my last two shots the bleeding thing started.my blood was thick and wouldnt clot like it use to...at the injection site..Pat ----- Original Message ----- Kathy Brunow Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 15, 2004 YES......Pat McBride <pmcbride1@...> wrote: the doc said all my numbers we're normal...should i ask about this when I go in Oct??? right before my last two shots the bleeding thing started.my blood was thick and wouldnt clot like it use to...at the injection site..Pat ----- Original Message ----- Kathy Brunow Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 27, 2004 Wooooo Hoooooo, Suzie! Biopsy done finally! What a load off. I can imagine it wasn't a pleasant place for the staff when they tried to tell you no! LOL Yes, we were very quiet this weekend. De Faith is the ability to not panic. -----Original Message-----From: suzie [mailto:suzieandsandy@...] Sent: Monday, September 27, 2004 4:31 PMHepatitis CSupportGroupForDummies Subject: Is screwing up again? Hi Guys, Is screwing up again or has this been the quietest weekend in the history of the "Dummies" ? I can usually count on getting at least 50 posts a day but the past few days I've gotten maybe 8 to 12 a day. What's going on people?? By the way, I finally got my biopsy. You wouldn't believe what went on !!!! I checked in & was taken up to Surgical Day Care - ME in Day Care at my age! After an hour or two I was taken to Ultrasound, a tech came in to make sure that they could find my liver & left to go find the doctor to come & do the biopsy. He came back five or ten minutes later & told me that the radiologist had told him that they didn't do that there. I started getting pissed. Started making myself heard. They sent me back to S D C & started calling the doctors cause they knew I was going to explode soon. One minute after I got back to the Surgical Day Care, they took me back to Ultrasound & we got it done! The surgeon had spoken to a radiologist about it bit it wasn't the same radiologist, once they got together, they figured it out & got it done!! So finally, Suzie got her biopsy - YESSSSSSSSSSSSSS!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I feel good. I'm going to call my HCV doc's office & reschedule my appointment - it's in December for something closer. The radiologist said he'd have the results in a week to 10 days. I can hardly wait to finally know where I stand with the dragon!! Barry, I'm coming for you & you are going DOWN you nasty,useless bit of dragon. I'm gonna bury you. Suzie Next time I'm coming back as a cat . Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 10, 2004 So you are saying I'm the crazy old cat lady down the street? That's not very nice, although it might be true. (grin) Tina Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 10, 2004 So you are saying I'm the crazy old cat lady down the street? That's not very nice, although it might be true. (grin) Tina Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 11, 2004 I'm doomed. OK the kids in the neighbor hood just call me the animal lady. My Zoo currently is: 2 Dogs (itty bitty rotties) 4 Cats (ranging in ages from 16 to 6 months) 3 Parrots 1 large lizard 1 large toad don't know how many fish i lost count Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 11, 2004 I'm doomed. OK the kids in the neighbor hood just call me the animal lady. My Zoo currently is: 2 Dogs (itty bitty rotties) 4 Cats (ranging in ages from 16 to 6 months) 3 Parrots 1 large lizard 1 large toad don't know how many fish i lost count Quote Share this post Link to post Share on other sites
