Guest guest Posted July 19, 2002 Report Share Posted July 19, 2002 In a message dated 7/18/2002 1:06:03 AM Eastern Daylight Time, outerspace@... writes: > Boy. . . do you have some rough days. > Sometimes I wish I was Bewitched and wish people and days out of sight!!!! Hi Kathy, Yes, lately all my days have been rough! I decided we needed a break and took Zeb to Cape Cod in our 5th wheel. We were combining business and pleasure at a fair. We left thurday and returned this evening. I couldn't get home fast enough. He was a bear!!! He loved the rides though. Happy to be back. People can be very fast to judge if they haven't walked the walk. Charlyne Mom to Zeb 9 DS/OCD ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 Hi girl: Glad it is working and you didn't wait all that time on the TT for nothing. I am waiting for some cash. May have to wait until after the first of the year. I just returned home from family reunion and everyone was very complimentary on my weight loss but I feel it doesn't show much because of my flab. I wear bathing suit with a skirt and if that is what I have to continue doing I will do so but would like to have the arms and tummy done. Bat wings are the worse thing for me. I feel like they show no matter what I wear. I made a joke of it at the reunion and offered to be the entertainment for the program and play a tune with my wings. If crickets can do it so can I. You are close to 21 months out, aren't you? When was your last loss or are you still loosing? I thought I was thru but lost while on the family reunion. Don't know how thought I was stuffing myself. Usually I gain while traveling but this time lost 3 pounds. Scales may just be tricking me. Keep in touch adopted litter mate. Phyllis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 Hi Kim, I had a wonderful weekend!! My son wanted to take the dog home with him and, to my surprise, he just loved the kitten! He's not really a cat person so that really surprized me!! Kathy --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2002 Report Share Posted July 27, 2002 Thanks Gareth! I live too far away to visit - but please tell your Grandma I said HI!! Have fun tomorrow - and be sure to tell me about your visit!! Your friend, Kathy Kathy I<<> Gareth and I have something in common. Hey Margaret!!! How are you and > Gareth?? Kathy>> > Hi, Everyone.....Kathy...Gareth read your question. He said 'I fine.' He also wanted me to tell you he's going to see his Grandma tomorrow and wanted me to ask you to come!!! I explained that you lived in Ca.!!! Take care, Everyone. Margaret Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2002 Report Share Posted August 1, 2002 In a message dated 8/1/2002 12:54:35 AM Eastern Daylight Time, outerspace@... writes: > was full-inclusion until the first week of 3rd grade. 2 years of > pre-school, > K-3 he did have a 1:1 aide.The academics (even after I modified them) > were out of his reach. I then put him in mainstream for 1 year -- then a > private > school for the past two years and with this IEP (almost finished after 47 > pages and > 9 hours of meetings) I have him mainstreamed at the local Jr High one day a > week. > Hi Kathy, You are my inspiration! Charlyne Mom to Zeb 9 DS/OCD ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2002 Report Share Posted August 1, 2002 In a message dated 8/1/2002 4:09:42 AM Eastern Daylight Time, outerspace@... writes: > One of my best friends' husband was tragically killed over the weekend in > a motorcyle accident -- she calls me every night around 11:30pm and we talk > for an hour > or two!!! Hi Kathy, How sad. I hope she can get through this. You are a good friend. Charlyne Mom to Zeb 9 DS/OCD ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2002 Report Share Posted August 2, 2002 -Kathy, so sorry about this loss, I just wanted to agree with what Irma said and please know my prayers are with your friend and also with you because I can imagine how hard this is. so glad she has you as her friend, God Bless, Dawn -- In @y..., " mum592001 " <ICANFIELD@s...> wrote: > Hi Kathy, > Many hugs your way and then share it with your friend from us. I can > totally relate to this issue when I had lost my 10 yr. old nephew, > going on seven yrs. and how it had happened, is all his parents had > to know. It still hurts to know that my brother-in-law and his wife > never even had a chance to view him and give him the last touch of > the goodbye or the final hug, no closure. I say it would not have > been easy for them if they had witness his final day but the family > and I agreed for his parents to remember him the way he was before > and not remember the way he had looked on his last day. You mention > you're not good at this, but you have comfort her the best way > possible with your presence being there. You are a true friend during > this awful tragedy time. Many Blessings your way for lots of strength > to cope with this issue as you are being a friend in need. Take care. > HUGS! > Irma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2002 Report Share Posted August 21, 2002 Dearest Kathy, I am truly sorry that the Remicade doesn't seem to be working for you and I don't blame you a bit for being nervous. I was sorry to see that you were hospitalized too. I am hoping that something will work out soon for you Kathy to feel some relief. I very much understand what you are going through with all the hospitalizations. It is very stressful when you don't know what is going on. I am sending good and positive thoughts your way friend. Love, Sue #2 -- Re: Remicade Treatment Dear Stilligans Hello to all, hello to you also new member kisda1aol (DOT) I took my 5th remicade on July 24th. Up until then I only remotely felt better with it, I became very ill and was hospitolized on the 29th of July, with what my Dr. felt was a combination of Still's disease relapse, infection and working to hard. I only wok 20 hours a week as a Social Worker in a hospital and Hospice. I had so hoped that the remicade was the miracle drug I had been waiting for. I was diagnosed with Still's 3 years ago, I don't know how long I had it before then. But since I have been diagnoised I've been in the hospital 3 times and of of work for at least a month or so after hospitalization.I am scheduled to have another remicade on Sept. 4th, and frankly I am a little nervous, it seems so many people have good luck with the remicade, I hope that you are one of the lucky ones. I would also like to know from anyone who's reading this if they can help me to start getting help with disability. Where do I go what do I do first? Also when I did have this relapse my ferritin level was normal, now I don't know what to think. My Dr. pumped me so full of Solu-medrol and antibiotics that I am wondering if the feritin level was down because of that. any thoughts out there. Your friend Kathy VanVickle from MN --- kisada1@... wrote: > well its been almost two weeks and i haven't felt > any change yet, but the > doctors say i may not feel a change untill the 2nd > or 3rd treatment. > i wish it did make me hungry ive lost alot of weight > since i first got > stills. well im praying that ill start feeling > better soon > > > [Non-text portions of this message have been > removed] > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2002 Report Share Posted August 22, 2002 In a message dated 8/22/2002 11:52:10 PM Eastern Daylight Time, outerspace@... writes: > and I went to the Calif. state fair yesterday. . . and the hottest > food item is. . . > deep-fried twinkies!!! I did not try one but they have been on the news a > few times and > I saw LOTS of people eating them and everyone I asked " LOVED 'EM!! " > Good luck with everything. > Kathy > Give the trainee a BIG bowl of chili and maybe that will loosen her > up??LOLOLOL > Hi Kathy, The east is the last to get the latest fad. Thanks for letting me know. I just may try them, anything to make the $$$$. I have seen deep fried oreos and snickers at a small fair but I didn't see any lines. Do you know if they were dipped in a batter first? Good suggestion for the new girl LOL! Charlyne Mom to Zeb 9 DS/OCD ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2002 Report Share Posted September 25, 2002 Hi Kathy, I have heard of the deep fried pickle but haven't seen it at a fair yet. I have 4 more days to go and I can't wait. I'm just finishing paperwork and my head is bobbing. I knew the gang would give me a second wind. I haven't been in the shower yet and I smell like a fry, yuck. I don't want to make or eat a deep fried anything after this fair until next season. I serve sweet potato fries with a choice of sweet and sour or honey. I can't make them fast enough this year. I miss the gang and can't wait until life is back to normal if there is such a thing. My foreign students have been a blessing. Till next week. Charlyne Mom to Zeb 9 DS/OCD ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2002 Report Share Posted October 10, 2002 In a message dated 10/9/2002 10:09:28 AM Eastern Daylight Time, outerspace@... writes: > Remember. . .I have done army crawls in the field next to my sons school > because he attends this private school that requires you to notify them > before you show up. Even when I bring a decoy. . .I mean cupcakes the > office will call the class immediately to let them know I am in the parking > lot. The school is located 5 minutes from my home and so I walk behind the > grocery store and through a small field and sit there to observe the play > area and I can also see them in the kitchen preparing lunch. But. . . > that's me! I may do strange things but it's for a good cause! LOLOL > Hi Kathy, I'm doing the sneak at school too. It's the only way I can find out if they are doing what is written in the IEP. Charlyne Mom to Zeb 9 DS/OCD ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2002 Report Share Posted November 11, 2002 Nice job!! Did you just open your website? I don't recall seeing it before. Or did you just redesign it? Whatever, you did a great job. Almond Joy Note: forwarded message attached. Kathy www.cozmiccreations.com http://community.syracuse.com/cc/ferrets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2003 Report Share Posted February 9, 2003 In a message dated 2/9/2003 4:00:25 PM Eastern Standard Time, outerspace@... writes: > On a lighter side. . . I also told children (out in the community) that he > spoke Russian, English and some French on the side because they wanted to > know what he was saying. " WOW! " was the response from the kids " He is > smart! " > Hi Kathy, I'm still laughing!!! Only you could come up with this one. Charlyne Mom to Zeb 10 DS/OCD ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2003 Report Share Posted March 17, 2003 Hi, Kathy, I haven't posted but have been following 's progress and am just thrilled for all of you! I started A/V therapy a few weeks ago and my therapist suggested I make a tape of my voice! She said it would be very good to learn the sound of it! So I'm sure that would be fine. Also, DVD's with captioning are great, too. The captioning on them is usually very exact, unlike television which skips words a lot. can hear the DVD and see the captions and the hope is soon he will decipher those voices without needing the captions. Hope this helps. Continued good luck and success!! Jackie Activated Nov.5,2002 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2003 Report Share Posted April 4, 2003 In a message dated 4/4/2003 1:53:23 PM Eastern Standard Time, Duffey48@... writes: > Between and my friends daughter (18 years old > > >- dying of bone cancer) I have been soooo busy. > > >I do read all the posts but have not been able to > > >sit down and respond as much as I would like to. > > >I wish for the best and hope everyone is dong well. Hi Kathy, I also missed this post. I will pray for her. (((HUGS))) Charlyne Mom to Zeb 10 DS/OCD ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2003 Report Share Posted May 15, 2003 Kathy, could you tell us some more about your condition? Did you just find out that you have Hep C? Have you had all the blood work and the liver biopsy done? Even though your symptoms are mild, you need to know if there's any damage to your liver. Are you seeing a hepatologist? You need to have a clear picture of where you are with this disease to be able to make an informed decision to take the treatment or not. Fire away with any questions you have, this is a great group and there are lots of people who can explain things for you. And there are lots of good things to read in the files Leighann has set up on the website. Marilyn Re: Re: Hi everyone it's been awhile SSDI info I am new at this. I have a mild condition and want some advise as to get treatment??? Or should I just wait and monitor the condition?? K Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2003 Report Share Posted May 17, 2003 { I am a 1B and I am non detectable going on 7 months. } I'll be going on 8 months June 2 of non-detectable (genotype 3a, stage 3}... there is definitely life after hell, I can definitely attest to that. I wish I could say that joint pains get better, but so far, such is not the case. I was pretty limber prior to treatment, but now, it's all stiff and not so flexible. Princess Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2003 Report Share Posted May 18, 2003 I'm starting to liken this (in my mind anyway) as being similar to getting confined to a wheelchair. No one offers up physical rehab, but the constant fatigue syndrome and lethargic lifestyle that came with it just made everything soft. As I continue to do more active things (ie. riding my bike, working in the garden etc.) I do feel the difference in my energy levels, although some days are tougher than others. That is if you consider sleeping till 1:30 in the afternoon tough <g> > { I am a 1B and I am non detectable going on 7 months. } > > I'll be going on 8 months June 2 of non-detectable (genotype 3a, stage 3}... > there is definitely life after hell, I can definitely attest to that. I > wish I could say that joint pains get better, but so far, such is not the > case. I was pretty limber prior to treatment, but now, it's all stiff and > not so flexible. > > Princess Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2003 Report Share Posted May 18, 2003 Do you remember what your viral load is? When I heard mine was something like 350,000, I freaked, then I saw posts from others whose viral load was 25 million! I think, and others will correct me if I am wrong, but all a high viral load means is that your virus is active, but it doesn't mean it's doing damage. I'm with Jeanie, I thought the article on Web MD - http://my.webmd.com/content/article/63/72153.htm?lastselectedguid={5FE84E90-BC77\ -4056-A91C-9531713CA348} - gives those of us with no or little damage some hope. When I was on the waiting list for treatment, Schering sent me a book about Hepatitis and the package inserts from Interferon and Ribavirin. At the top of one of the pages, there was a black box with some writing inside. It said that this medication *will* cause hemolytic anemia. I didn't know what that was, so I researched it on the net. It means that the medication will destroy your red blood cells faster than your bone marrow can make new ones. Oh, goody! Reading the other side effects didn't make me feel any better, either. If these protease inhibitors that are being tested do work out, it will mean that you can take the treatment at a much smaller dose, the chance of it working on genotype one will be far greater than it is now, and because it will be a smaller dose of medication, the side effects won't be so chilling And something you should ask yourself is " How am I feeling? " Do you feel sick? How bad is it? For me, my only symptom was extreme fatigue. I got lots of good advice, a lot of it from my Be In Charge nurse at Schering, and I feel tons better than I have in years. Drink lots of water - 1 oz. for every 2# of body weight per day. Walk, even if it's only to the corner and back, if you do it every day, you will develop more energy. Take a good multivitamin without iron in it. Try to eat 60 grams of protein a day. Generally, meat gags me (so sad, because I used to love a good steak!), but I went to a health food store and found protein drinks (*without* iron) to try to keep my protein intake up. Not getting enough protein will make you tired all by itself. If you get fatigued, stop and drop if you can. I used to be ready for another 8 hours sleep an hour after I woke up in the morning, and I would force myself to stay awake because I " shouldn't " be tired. I found if I lay down and take a nap when I feel like I need one, I will only sleep 20 minutes to an hour, and then I wake up and have energy. I still have my days, and sometimes 2 or 3 in a row, where I am just exhausted. But hardly ever. And it only took me 2 weeks of doing the things I just described, to start feeling a whole lot better. That's when I made my decision not to do treatment at this time. When I first got on the list to do treatment, I felt so crappy that I didn't think the treatment would be any worse. But once I started feeling better doing such simple things, I didn't want to risk the sides that so many of my wonderful friends on this list are having. And some side effects don't go away after the treatment stops. Whatever decision you make is the right decision for you, just have faith in yourself and trust your gut instincts. Marilyn Re: Re: Kathy My geno type is a one but my viral load is high. the doctor says I can wait for 3 to 5 years. I would then have another biopsy. I have mild damage a one, and a two inflamation. I am scared of side effects. Still thinking. Many people on the board seem to have had horrible reactions. Kla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2003 Report Share Posted June 3, 2003 In a message dated 6/4/2003 12:23:37 AM Eastern Daylight Time, UrthMan@... writes: > Charlyne. . . STAY THE COURSE!!!!!! > > Zeb thanks you. . . I thank you. . . we all thank you!!!! Hi Kathy, I have always preached knowledge is power but sometimes that knowledge can leave you powerless. I'm back on track. Charlyne Mom to Zeb 10 DS/OCD ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2003 Report Share Posted June 4, 2003 At 01:47 AM 6/4/2003 -0400, you wrote: >but sometimes that knowledge can >leave you powerless. I'm back on track. Knowledge is a great tool, but it is rendered helpless in times of crisis without folks to shore you up. I'm sure you know that we're all walking with you in our thoughts and prayers. I love the way folks rally on this list. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2003 Report Share Posted June 5, 2003 Kathy OK, who spilled the beans? You weren't supposed to know that I was coming to Niagara Falls for a visit this weekend. It was supposed to be a surprise. Poop!! Oh, well. Sharon said we're going out partying Friday night....boy I'm game for that!! Tell your Mom the quilt arrived that she made for 's baby. I had told her that I was coming out with Sharon and I could get it then to save from paying postage but she insisted on mailing it. She's such a sweetheart. Well, I guess I should get some sleep. I'll see you Friday. Re: Shaye I think I will hold on with this soap group. I figure if I can get rid of all of the other groups, that should take care of most of my problems. I like this group, and read most of the mail. At least if I need some help with my soaps, I will have someone to help me. So dont take me off right now. I might have to change to another server if I cant get this worked out, so then you will be deleted anyways, and I will have to write to and have her sign me back on again. and my cousin are coming out this weekend to help me finish packing my house. I am closing on Friday, and moving to a smaller house. I think you all know that I got seperated last year, and in the meantime, my husband got fired from his job. My life is one big mess right now, and my diabetes is killing me from all this work. Of course the husband hasn't bother to offer any help at all. I hope when my life gets straightened out, I will be able to get back on line with you guys, and find out what everyone has been doing. Talk to all soon I hope, and thanks Shaye for writing. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2003 Report Share Posted October 16, 2003 I order from my naturopath, but I would contact Williss Langford at willissl@.... He gives you helpful information to on seizures (lectures at autism one conferences). He can order it for you. Kathy [ ] Kathy Hi! It is too early to know what I need to get for my son, but that list you gave about glyconutrients( i know I misspelled that, but I forgot to write it down.) is foreign to me. Do you all on here mail order or go to particular places for these supplements? Thanks! Joanie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2004 Report Share Posted February 20, 2004 Hi Kathy, My daughter wears the spinecor brace. That's pressure straps. We are waiting for surgery. She will be having growing rods in June. IF you need any more info, please get in touch. thebratbybunch@... Take care Gill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2004 Report Share Posted March 21, 2004 Kathy, It's so sweet of you to be worried because I was absent! I'm doing better and am getting ready to just go chill with my daughter and watch a movie. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.